Stacey’s Hair Loss Story – Searching For Answers

by admin on November 17, 2007

Stacey's Hair Loss Story - Searching For AnswersStacey had posted this story as comment on this post, but I felt it should be a post of it’s own so I’m reposting her story here:

Hi, I found this web site today. I came in tears when I read this. I have finally found people who are going through the same similar problems as I am in my life right now. I am a beginner on this Hair Loss Adventure. Let me tell you my Story and maybe since you all been through more doctor experience then I have. You might be able to give me some Advise and Tips. At least, I hope you will be willing to help. Ok, Here it goes. :)

I was diagnosed with PCOS in Nov.of 2005, As well with border line Diabetes. ( Polycystic Ovary Syndrome) I was 23 years old. I am now 25. Doctors don’t know much about PCOS. They are still doing research on it. I did some looking up on it. ( Let me tell you what it is for those who don’t know: It’s where you have tumors that grow in your ovaries and can block and prevent your eggs from going through your tubes to make you become pregnant. As well as your body produces too much androgen and Hormones and your body could produce too little Thyroid Hormone as well. Which can cause you to have many Symptoms such as ad normal periods, No periods, No pregnancy, Diabetes, Heart disease, Heart attacks, High blood pressure, Excess hair, Acne, Skin tags, Early Menopause, Cramps from your ovaries, unexplainable weight gain, trouble losing weight, and so on and so on. There’s so far No Cure, Some Doctors say losing 20 to 30 pounds to get rid of the belly fat that maybe causing PCOS Or taking birth controls to help control the symptoms. (Which means slow down the process.) People can’t catch this by people who have PCOS. Everybody with PCOS are different. So, You may not get all the above symptoms. Doctors told me that the only way is to control the symptoms is through birth control pills and if I wanted to try to become pregnant is to take Metformin, If I have trouble getting pregnant. At that time, My hair was starting to receive in the front and lightly shedding.

Now, I have very little bangs And my hair is thinning from my bangs all the way back on top. It’s more noticeable up front where my bangs and part starts. I part my hair to the left to try to hide it but it doesn’t really work. You can see it in the light. And my part looks wider then it should be. My hair sheds lightly during the day now, and sheds a lot in the shower and when I am combing it. ( like 10 to 30 hairs each showering and combing).

My first attempt: I tried going to a Hair Dresser to ask them what they would recommend? And what would be causing the shedding. Instead of just helping. They embarrassed me in front of everyone in the salon and told me if I don’t start fixing my hair better and using a Hair Loss Product that I was going to go bald by the time I hit 30, And that I would be more bald then she will be 20 years from now. I bought the Nioxin shampoo and conditioner that she recommend. It made my hair shed more the first week I used it. In time, I saw my hair strands seem strong and thicker. But it didn’t hide my thinning spots. So, I stopped using it. My hair weaken and fell out some.

So, I decided to go see the Gyno and ask them. She told me it could be from my PCOS. I asked her if there was any vitamins or anything she can treat me for it. She laughed and said No. Just over the counter Vitamins and Rogain. She said that the Birth Control should be helping it to Not fall out as much. But it still falls out. That’s what the problem is, I want it to stop shedding like crazy when I wash my hair, And comb it. So, I bought complex B Vitamins. I used it for 9 months. Didn’t see any changes. The pharmacy told me that’s Good Vitamins for hair.

Then my second attempt: I went to see my Doctor. He said that the hair loss has nothing to do with lack of Vitamins And Nioxin just thickens the hair strands to help hide some of the problem not fix it. That I need to see a Dermatologist. And then we will go from their about what they would have to say. My Doctor told me that there is still hope for me and one or two ways out of 6 ways that will work for me.

My third attempt: I have an appointment with the Dermatologist in DEC. of 2007. I am scared, on what the results are going to be. I want them to say it’s just some imbalance of lack of nutrient Or something easy and can be Curable. But, I am afraid that they aren’t going to say that. Cause my Father lost all the top of his hair by the time he hit 28. My Mother has thin hair, But you can’t see her scalp. My Grandmother that died before I was born on my Mother’s side was balding on the top of her head. My Sister is 10 years older then me and She has thin hair but again, You can’t see her scalp. So, I guess. I will have to wait and see what the Dermatologist will have to say. Wish me Good Luck! :)

I just want this problem to go away! I can’t be myself around people. It feels like I try to block everyone out by hiding in the other room, staying by the older people instead of people my age, not going outside as much, don’t go out to dinner or go in places with a lot of people as much. When I go out the pretty people and people my age stare. Some make a light giggle like it’s funny and their better, some make bald jokes that seem like their not referring to you but you feel like they are, It’s hard to get a Job, It makes the people who are close to you to not what to look you in your eyes cause they don’t want to hurt you by looking. I haven’t been to a Hair dresser for two years cause of my experience that I have had and Cause of my thinning hair. I don’t like swimming, walking in the rain or to be caught in the rain, I am pushing away from my boyfriend of 6 years. ( I am not trying to). I don’t feel uncomfortable about my self when I am around him cause of my hair. I don’t like being close with him by kissing and being sexual with him. He thinks its him. But I tell him it’s Not. I don’t like looking in the mirror a lot cause it just makes me depressed. I shower sometimes with the light off, I don’t like my boyfriend around when I take a shower, when my hair is wet, Or combing it. It’s like when I am combing my hair, And my boyfriend comes in the bathroom my body jumps like I am a child stealing a cookie from the cookie jar. Cause, I feel ashamed the way it looks. It makes me so stressed over this. I don’t even want to get married because of this. I want to but it just wouldn’t be a pretty wedding with a Beautiful Bride! I want my hair to grow back thick, So I can feel like a WOMAN again!

I will take any Suggestions,Tips,Or Advise I can get. So, Give me your thoughts. Nice ones that is.
Please don’t mind any mistyped words.

Thanks. For letting me to express my Problems and Feelings like this! :)

*****************************

Dear Stacey,

Thanks for sharing your story, a lot of what you wrote is so similar to the things I do and feel. Showering with the lights off… jumping like a child getting caught stealing a cookie from the cookie jar when you are caught by your boyfriend catches you with wet hair. I know that feeling intimately.

I think the first thing you should consider is to find a doctor who is knowledgeable in treating PCOS. I’m not a doctor, but that seems like it would be the most logical thing responsible for your loss of hair and it is important that you find a doctor that can treat it properly. There is a lot of good information of PCOS of Dr. Geoffrey Redmond’s site. Here is the link There is also quite a bit of information about PCOS on wikipedia. Here is the link

This is a question from that page I posted above, Dr. Redmond writes:

Does anything really help with hirsutism or alopecia?
Sadly, many women with PCOS are told nothing can be done. Generally this sort of advice is from physicians who do not take these problems seriously or do not know how to treat them. Do not let yourself succumb to pessimism about PCOS! Proper treatment usually can reduce facial and body hair and help scalp hair. Shedding in androgenic alopecia can be slowed toward normal and many women get regrowth. Hair may not be restored to the fullest it ever was but often there is enough improvement to reduce the terrible worry that goes with alopecia. Of course, as with any medical treatment, results vary. Unfortunately, if left alone, alopecia and hirsutism often get worse over time. For this reason, if you are distressed by them, its best to seek evaluation and treatment rather than waiting to see if they will go away. —–

Working with another doctor on treating your PCOS could help your hair loss. I’m appalled that your gynecologist actually laughed when you asked if there was anything to treat it. What is wrong with doctors? How can they not understand how devastating this is? It’s so frustrating. In my opinion Nioxin is a waste of time, I of course used it myself years ago. It does nothing to regrow hair and is at best a mediocre thickening shampoo. It sounds like each doctor visit you get a little piece of the puzzle, but I think you should explore the possibility that the PCOS could be the trigger for you hair loss. It is highly unlikely that the cause of your hair loss will be the lack of a nutrient, but that doesn’t mean there isn’t hope. Dr. Redmond believes that with proper treatment women with PCOS may see a reduction is shedding, regrowth and overall improvement of hair, and that is key –to be able to get the hair loss under control. That is good news and a ray of hope right there.

When is your appointment with your dermatologist? How long have you been losing your hair? I know this probably will be of little comfort, but losing 10-30 hairs after combing your hair after a shower is not bad at all. Of course every hair counts when you are losing your hair, but I’ve run the gamut of shedding and can say that nowdays if I lose 40-50 hairs after a shower I consider it a good day. I’ve lost 500+ hairs/day not too long ago. Today I lost approximately 65 and I still consider that good for myself. Of course it is all relative to what you are used to. “They” who every they are, say it is normal to lose 50-100 hairs a day. I know that doesn’t mean much and is hardly comforting because every hair shed when you are losing your hair counts sooo much.

I know how hard this is on you, I live it everyday and I’m so sorry for all your sufferings. It is such an awful and unexpected thing to happen, especially when you are still in your 20’s and people can be so unnecessarily cruel. So that you know you are among women who understand I’ll share a few things with you… I shower in the dark at times, and choose my seat at a restaurant based on overhead lighting and when possible I even select restaurants based on how dark they are, you know the kind you need a flash light to see the menu :) I have my poor fiance “trained” for lack of a better word, to not come into the bathroom area when my hair is wet and to stay away from the hair region on the rare occasion my hair is down. He hugs me low, sometimes he hugs my leg, it makes me smile because he understand me. He understands it is a 911 situation when I cannot find a hair tie because for the most part I don’t feel comfortable leaving the house with my hair down and always pull it back into a ponytail. So we crawl around the floor together looking for one. Has is affected our intimate relationship? Of course it has, how can it not. I certainly don’t feel sexy when I see my hair all over the place and seeing it fall on the kitchen counters while I prepare something. A lot of couples shower together, umm definitely not going to happen (not even in the dark) I’m too busy paying attention to how thin my hair feels and counting the ones that fall and stick to my body. I wish it wasn’t that way, I wish I was more free. But I’ve just learned to accept this is the way it is, hair loss causes us to have to alter our lives, no doubt about it. I’m fortunate my fiance is so accepting. You touched on something very close to me which is getting married. I’ve been engaged for years but have avoided the big day because of my hair loss. I feel awful about that and feel that I’m cheating myself and my fiance. But I don’t wanting to be a balding bride, I just cannot picture that. I want to feel good about myself on my wedding day.. feel beautiful. Somehow I don’t think a ponytail could work with a wedding gown. I’ve seen both of my brothers get engaged after me and both have been married for quite some time. I’m writing you these things about myself that I’ve already written several times over on this blog, not because I want to talk about me, but I want you to know you are not alone. All those things you think and feel, I feel them too.

There is no quick answer or cure for hair loss and that is a hard truth to cope with. For some women it is temporary and they end up growing their hair back and their hair loss just becomes a thing of the past. For others it is a lifelong journey. I say “journey” although my first inclination was to write “struggle,” but really we get to decide how how we want to deal with our hair loss emotionally and the attitude we maintain about it. It took me a long time to realize that and I’m still trying to hit that message home that “I am not my hair

I wish I had more answers for you. Thank you for being so open and honest with your feelings and for sharing your story.

~Y

{ 159 comments… read them below or add one }

Stacey December 13, 2007 at 9:57 am

Hi,

Thank you so much for opening up to me as well. I feel and do the same things as you. I try not to stay in bright lights anywheres. The wedding, the closeiness towards my boyfriend are all the same as you, too. I rather have the lights off when it comes to closeiness, even when i just lay my head on his shoulder on the couch, the shower we used to do that, But we haven’t done that since back in the beginning of 2005. We don’t go out alot like we use to for dinner and places that much anymore either. Most of the time, I don’t feel up to it, with all those people I know that’s going to be there. I hate pushing away from my boyfriend and the people I love. I wish I could be worry free and do anything with bright lights on. :(

My boyfriend, I don’t know if he accepts my hair loss. Sometimes, I am afraid to just come out with it. I have talked to him about my thinning hair and my PCOS. But I think he just gets tried of hearing it. So, I have stopped talking about it. I cried once cause I couldn’t make this appt. with my dermo cause the only one in the area is hour and 15 mins away. And he came in the bedroom and said what’s wrong are you crying cause of your appt ? And i said yes. I can’t go it’s to far away. And he said I didn’t know that this bugged you that much. And I said yes, I can’t stop thinking about it. It bugs me just about every minute of the day. And he just hold me in his arms and said then you are going… It was just about the most sweetest caring things he has ever done!

Puja January 10, 2008 at 12:33 pm

hey stacey
my god when i read your story, felt like u were writing about me…i am 27 now. I always have had thin fine hair . At around 16 yrs of age, my hair got even thinner at the temples and since then has started my never ending quest for ther perfect solution but till date i have found none… in the last 10 years I have tried everything for my fine hair- minoxidil, hair loss treatments, homeopathy, etc etc …i have been to trichologists , dermatologists, ….but no one has ever been abe to give me a reason WHY ??? why do i have such thin hair and how can i fix it…levels of every element are fine in my body, no deficiency at all…The only reason could be genetics (my dad started losing hair around 30 and now is nearly bald at 60)…BUT I’M NOT EVEN 30 YET…and i’ve had this problem all my life…NO moving about in the rain..nor strong winds lest my flyway hair just flies away ..3 yrs ago i was diagnosed with PCOS , seems like i aways had it (reason for my always delayed periods and for the dark strands of hair on my cheek sides and chin)For one year i was on the pill with no effect on the hair. But then we wanted to have a baby, so I religiously took metformin and the cysts got smaller in size and i got pregnant without any hassle. But there was no effect on my hair whatsoever. (during pregnancy it looked only slightly better than before but after delivery it was back to the same old crappy hair days)
.I hate the fact that i have never been able to style it like other friends of mine …finally i am thinking of hair extensions or in my case instead of extending , they will add to the existing hair to give it a fuller look..but its supposed to last only 6 months and it is expensive…will do it someday , not sure when….
I feel so unlucky…even little girls have much thicker hair than me…if i dont wash my hair every other day, then i look unkempt and the hair looks even thinner, oily…If i had a head full of hair , my confidence level would be high…I would feel like a woman

Arsh January 10, 2008 at 8:10 pm

Hey Puja,

I’m not sure if you would want to try this, but you can get a cheap topper (although an integration would sound like a better option for you, as opposed to hair extensions which might cause more damage because they place stress on your individual hairs). Type in alternative hair, it’s a non profit in rochester new york. If you talk to sherry you could get a cheap topper… I got mine for about 250 dollars.

Stacey January 19, 2008 at 10:42 am

I am back! Sorry that I haven’t writing in a while. Let me give you all my updates from my appointments I have been too. Ok, Here it goes…

I went to my dermo in Dec of 2007. He told me that from what I put on my form about Hair loss, Acne, And Excess hair. That he knew right away that I have PCOS with out me telling him. He said that He can’t do anything for me at this time until I see an Endocrinologist. He said that the Endocrinologist will do some test And put me on some hormone pills. He also said that my hair will grow back And my acne will clear. He also said when I see the Endocrinologist then after that treatment that he gives, that if I still have problem with Acne And excess hair he can give me something to help it. I am still looking for an Endocrinologist. I have found one in my area But I have to call to see if they accept my health Insurance first. Then the other ones are an hour to two hours away. So, I hope I can get an appointment with this one in my area.

Adding to that, I have stop taking my Birth Control Pills to give my body a little rest since I have been taking them now for 10 years straight.. I have notice that my hair is starting to shed a little more when I wash and comb my hair. Which soon I will get back on Birth control. Right now, I am only taking Vitamins.. Besides when I am on Birth Control Pills to help control my PCOS.

I am so tired of being on birth control.. But I guess what they are saying that hormone pills and birth control is only what slows down the symptoms of Hair loss, Acne, And Excess hair for PCOS.

My Fiancee And I (Yes, Did I mention that on Christmas Eve my BF of 6 1/2 years Proposed to me!) I am Excited! :)

We will like to have kids. But out of all the times we have tried nothing yet… So when I see this Endocrinologist I am going to ask him about Metformin. But I have been told once you go on it your stuck on it for good. Cause your body depends on it. Does anybody know if this is True Or Not?

I would like to have a baby before I hit 31. My sister has PCOS.. She has been trying for 7 years to get Pregnant. But she has stopped trying now.. Which brings me to be concern on if I can become Pregnant And why she has thin hair but not thinning hair. My sister And I aren’t very close And we both live in different states.. She doesn’t tell me anything about her PCOS. I guess, cause she is ashame of it.. I am not sure why.

I have finally went to the Hair Dresser once again after my Bad experience like 2 years ago.. I called them first And asked if they mind working on someone with fine thinning hair. They said No, Not at all. I also told him that the last Hair Dresser I went to gave me a Bad experience.. And I made an appointment with them that day. And she did a great job And didn’t say anything that would hurt my feelings. She also watched which words she used describing my thinning spots. And She gave me a short Cute Bob, That’s only an inch past my ear lopes. That I just loved Cause it’s easier to take care of And my hair doesn’t shed as much with it.. As do to long hair.

Dear Puja,

Congratulations on your pregnancy! I am glad that you have at least experienced having a baby with PCOS.. That should be one thing you should be lucky about. If you don’t mind me asking if it’s a Girl Or Boy? Did you have any Pregnancy Problems? Where you on Metformin through out for pregnancy Or on Anything that would help your PCOS? Did your hair shed more Or less when you were pregnant? And Was he Or she born Healthy? Do you know If our Daughters may get PCOS as well as they grow older..? Also, What Medications are you taking right now to help control PCOS? If you Don’t mind me asking…

And for the Hair Extensions I feel that my hair is to thin on top And to fine for that.. I would be afraid they wouldn’t stay in Or it would make my hair fall out more when I take it out. But It might work for you.. So, It’s something to look farther in too. I am also Sorry to hear that the Metformin hasn’t worked for your Hair loss, Has it Helped the Acne, Periods And Excess hair apart at all?

I guess, I will try whatever my Endocrinologist gives me. It’s better then not trying anything, Right? I just which that they would really understand were “US” Women are coming from And understand How fast we need a Miracle. It’s really hard to deal with in every way. I want to feel like me again, Which is 100%, Not 50/50 most of the time.

I also want to add that there is a New Hair Reducing Cream out there for women with PCOS Or Women who have Unwanted Hair.. It’s called: Vaniqa.. It’s suppose to slow down Hair Growth from Small areas like your face, toes, And so on.. I am going to ask my Doctor for some.. If I can’t stop my small excess hair then maybe I can slow it down And plunk it less often, Right?

admin January 20, 2008 at 3:16 pm

Hi Stacey,

Congratulations on your engagement!!! That is such wonderful news! And it is also good news that your doctor thinks that your hair loss, acne and excess hair will go return to normal once you are on the proper hormone pills after the receiving the diagnosing tests from the endocrinologist. You’ve had such a difficult journey, but you sound so much happier in your update post than the first time your wrote. You’ve found answers and along the way got engaged, that would make an gal very very happy and to me that it real success!

And hooray for having a good experience at the hair salon. I also forewarned the woman who I go to for my annual haircut, I just figured it was best to come clean to avoid any problems and make myself more comfortable. Plus I need her to be very gentle and so harsh with all he cutting tools. I also ask to comb my own hair after it’s been washed. She is very understanding and remembers everything when I return to her the following year!

I did some research on your question about whether or not you would have to continue taking metformin forever but unfortunately I couldn’t find anything. I hope Puja will be able to help you with that since she has taken it.

Thank you so much for keeping us posted with your story!

~Y

My Network Profile: http://community.womenshairlossproject.com/womenshairlossproject/

gypsy February 7, 2008 at 5:17 pm

hi stacey

i just recently wentto a endo and he suspect i have pcos also, still have to go threw a slew of test, to be sure…i wa just wondering what your endo said and what did he suggest for a treatment….right now mine wnats me to loose 10 pds , and go on a diet low in carbohydrates and excersise… according to my ultra sound i do not have the pearl like cyst on my ovaries , but he said i could still have it, thats why i have to have all those blood work…
jsut curious as to what your endo says? we only ahve one endo here , so i dont have the option to get a second opinion…
hope all turns out well!!!!
gypsy

Katie February 8, 2008 at 3:11 pm

hello sisters!
Just starting this adventure. Big love to you all and lets keep the faith and try not to take life to seriously. Had a bit of a freak out yesterday when i took a mirror to look at back of my head. never let myself worry too much about all the hair that fell out but now its getting to me. Can anyone tell me whats the story with birth control Yasmin. Is it a friend or foe to me. I also blame my adntideppressant ive been in celexa and other for years. Anyway im going for a run now and try not to get to upset about it. big love.xxx

stacy February 9, 2008 at 6:27 pm

Hi Gypsy,

I didn’t go to my Endo yet. I went to my Dermo first. He said I need to see and Endo. So, I was on the process of finding one. I have found only one as well in my area. I can’t see him until August 2008. Cause he isn’t accepting new patients until then. Which I need one now, I have been waiting to long. So, I am going to try to see if my Primary doctor can some how get me in there sooner. I am not sure if he can, But I guess it won’t hurt to try.

My Gyno, And Primary doctor told me as well, To lose weight from 10 to 25 pounds and take Birth Control Pills. They said it all depends. That it will help Control And Slow down PCOS Symptoms. And keep you ovulating as well. They All Referred me to see an Endo cause they don’t know much about PCOS.

I wish it was easier for people who have PCOS to see the Endo much sooner And get the Med’s they need in order to help control it. I can’t wait to see my Endo. I need something to help control the Redness And Acne that I get here and there, the unwanted excess hair, the mixed Emotions I go throw week by week, and my Thinning Hair. My Level isn’t as bad as PCOS can get. But it’s going to get there if I don’t find an Endo doctor soon.

Right Now, I am on a Diet since Jan 2nd of 2008. I eat 1400 Calories a day. I eat everything that is Low fat,Low Carbs, Low sugar And Low Calories. Which is whole grain, lean meats, Little bit of diary, And a lot of fruits, veggies. I eat breakfast, snack, lunch, snack, And dinner. And eat nothing past 7 PM. I also exercise 3 to 5 days a week. Which includes 30 min’s of walking, lifting weights, and crunches. I have lost 11 pounds so far. And not giving up until I am at my healthy weight goal. The food, I am always going to continue to eat that way. I think everybody should. It makes you feel Good Inside and Out!

So, Since I can’t see my Endo sooner. I am doing this as my goal for right now. Once, I get any more results about my weight Or my Endo Or my Hair. I will let you all know Soon as Possible. I hope this Helped!? I am New as Well at this All too. So tell me what you know And I will share with you what I know And what I have found out by my Doctor.

Good Luck! :)

Christa February 19, 2008 at 12:47 pm

Hello, my name is Christa and a year ago I too was diagnosed with PCOS. Since I started having a period they were so painful I am usually bedriden. Last year I noticed my hair was falling out alot. It’s such a scary thing, I’ve never had any hair trouble before and haden’t realized how devistating this can be. So I started searching for an answer.
November of last year I found Macca root. This stuff is incredible. It’s dubbed a peruvian super food and boy is it ever. It comes in the form of a pill or as powder. I take it in powder form because it’s more potent. I feel awesome…no more cloudy mind, painful periods, mood swings and apparently it helps induce fertility (my bf was infertile with 0 mobility and now has 25% after just 2 cycles, both males and females can take it).But the best part about this is it balances hormones.
My other wonderful dicovery is Biotin. This is a vitamin part of the B complex which supports cell reproduction and hair growth. I’m telling you it works. You have to take it in high dosages though to see any results which would explain why you wouldn’t see anything by taking a b complex. The amount isn’t that high, like maybe 30 mcg. I take 5000 mcg which has shown a major improvement. I lose next to no hair when I shower. This stuff is also beneficial in lowering blood sugar levels in diabetics (which is also associated with PCOS). Biotin helps with metabolising proteins, fats and carbs as well.
I hope this helps, I’ve had great success with this regimen.
Stacey: If you try this give it a good go…6-9 months should tell you if this will work for you. Good luck

Christa
ttc (trying to conceive)

Stacey March 1, 2008 at 11:04 am

Christa,

Thank you! I think I might give it a try. What can it hurt from it!?
Well, About the Biotin, How much can I take Or Should I take without it being an over dose? Also, Can I find it at an Rite Aid, Or CVS? About this Macca Root, Does it taste nasty? Can you put it in water Or something like that And have it work just as good? Also, How much are you suppose to take per dose? And Can you take all these at once?, Even with Birth Control Pills.

I have been off my Birth Control Pills Now for 5 months. My Hair shedded more then it has for 2 months, But now for the past 3 months, It’s been light shedding Or None. I have also been on a Low Carb And Low Sugar Diet, And Lost 13 Pounds. Which is helping with my PCOS. But Not making it disappear Yet.

I want to lose 25 to 35 more pounds, That will bring me down to a Size: 10-12.

Also, The Only appointment that I could get for my Endo is 5 months from now. They are Too Busy And Not Accepting any more Patients Until then.. Which I hope on that day, They can do something for Me by then, If Not. Then I don’t know what to do Next…So, Wish Me Good Luck! I will Write back Again, Soon!

Here is a place you can contact Me Or Other Women with Hair Loss.. Thanks, to Y! So, Don’t Forget to Thank her! :)

All you have to Do is Sign Up And Only put what you want about your self Or Any Pics, Or No Pics.. It’s up to You! Just Click Below:

http://community.womenshairlossproject.com/home.php

Joan May 4, 2008 at 7:12 pm

Hello, I too was diagnosed with PCOS in 2001. This was due to missed period. It was an OB that diagnosed me but then referred me to an Endo for further help. Endo put me on Metformin and advised me that losing weight will help control other issues. I have fine hair and loosing it, I have acne every now and then, keratosis pilaris, dark skin spots, skin tags, etc. I moved here to US in 2003 and got married. We tried to get pregnant in 2006. Since 2003 I have always recorded my periods and has always been on metformin. I also was on spironolactone in late 2005 to early 2006 due to bad hair loss and acne. It dramatically made things better for both acne and hair loss. But I had to stop taking it because we were considering getting preg. I was on Clomid 50mg. First round was good, I responded great, the timing was just wrong. 2nd round, same dose, timing was right! Luckily we got pregnant…with twins…boy and girl! I was blessed. Everything about PCOS did not worry me. But my face was almost covered with acne while I was pregnant. My hair did not shed a whole lot. After I gave birth, it was a different story. I was shedding almost 5 times worse. Now, it is not as bad but it is still bad. And it is bad when I am taking shower and whenever I comb it. I sometimes just don’t comb my hair at all.
I know how it feels like to be stared at…not in the face but on the scalp. it is so belittling. I try to avoid talking to someone while I am seated down. When I was still working, it happened a lot and I can’t even talk to that person eye to eye. I pretend that I am doing something just to find an excuse to get my head off their site. I used to always pull my hair on a ponytail but it made it worse. It was just lately when I try to just let it down. Luckily, I am a stay at home mother. I don’t need to do all these endless trial and error on how to do my hair everyday.
Now that my babies are a year old, I am taking notice of my PCOS symptoms again. I know I have to work on losing weight. I only gained 20 lbs with my pregnancy and was 20 lbs lighter than my pre-pregnancy weight a week after I pushed the twins out. But now, it is a different story. I am hoping that with losing weight, it will help control shedding of hair. I have read a lot about Biotin too and now I might just try it. I have never been on BC in my life but I had to resort to one. Even if I am not on Metformin or any medication, there is just more chances of me getting pregnant now after the 1st pregnancy, there is a higher chances of us having multiples due to age (I will be 33) and they said multiple pregnancies can happen multiple times (:-) So I resort to Implanon. It is easy for me with my hectic schedule. I have only had it for a month so I can’t really say if it does anything to my hair loss.

Nancy May 27, 2008 at 9:02 pm

I feel the pain you all feel…my hair started shedding when I started my meds for Rheumatoid Arthritis…it’s gotten to the point where you can definitely see my scalp, even thru my curly hair…it used to be long, red, curly and the envy of most women…now I avoid the sun so you can see the reflection on my scalp. This is causing me to avoid situations where I might meet someone (I’m divorced) because I’m so distraught and embarrassed by it. I’ve read that low iron can cause you to lose hair. I’ve found some vitamins that causes your hair to grow at a faster rate as well…they’re especially formulated for hair. It’s called Hair Formula 37. I’m having some regrowth (I use Rogaine, as well as trying to hide some of the thinness with Topix), but not enough around the front. I want to cut my hair (it’s about 6 inches past my shoulders), but I’m afraid of cutting it now….I’ve lost too much! Any suggestions out there from fellow sufferers?? Anything would be great appreciated……God bless….

Elizabeth June 4, 2008 at 6:32 pm

Hello ladies!

I was just diagnosed with PCOS three weeks ago. Back in the middle of April 2007 I noticed rapid hair loss in the front of my scalp and part. I thought it was a result of high stress levels due to personnal issues I had a few months prior. But in May my part had widened so much that I now saw my scalp and my hair line had recieted back. I was loosing so much hair that my self-esteeme dropped dramatically. I cut my hair.

I went to see my doctor and he referred me to a hair specialist. I argued with my specialist because I FIRMLY believed that I did not have hereditary hairloss like he diagnosed. I told him it was something else causing this issue. He then asked me how my periods were and I informed him that I wasn’t having them for 6months. But this wasn’t something new to me. I had issues when I was 14yrs old until I was 16yrs, so I did not make it a big concern.
He sent me to the Endo and she diagnosed me. I have yet to go for my ultrasound to see if I have the tumors.

I was in a relationship from sept 2004 until april 2006. During this time I was on BIRTHCONTROL pills. I stopped the moment the relationship ended. I never wanted to go on it but I did. I BELIEVE THE BIRTHCONTROL pills triggered my PCOS. Because I also noticed my flow was deteriorating.

I completely understand how you are all feeling. I’ve tried so many different pills but nothing seems to work. I have even seen a accupuncturist/herbalist. The cost was very high and not covered by medical. It didn’t work.

I cry sometimes at night because my hair won’t stop falling out. I have cut it so short now but it does not help to hide the visible bald spots. There is NO regrowth. I have gone completely nuts! Im researching everywhere to come up with something that will help.

Isn’t there anyone out there who can help us?

Jen July 5, 2008 at 1:32 pm

Hello Everyone,

I am going through the exact same thing…it is horribly depressing, and I feel hopeless! I have gone to several Dr.’s and have only been given metformin. I have only been on it for about three weeks now. I have not seen an improvemnet with my hair, but I did finally have a period. It’s been over a year since my last one. Anyway, I will keep checking back for some hopeful information, thanks to everyone for sharing their stories!

Jen

Angela July 24, 2008 at 5:54 am

Hey,

Has anyone heard of the natural “supplement/drug” called Macafem? I had shedding from getting off the pill two years ago and now I am looking to stop them once again but want to reduce the hormone shock that will occur. I can’t find anything on weening off the pill…has anyone tried that?

This is what the site says:
“As a natural product, Macafem nutrients help to improve your endocrine system by inducing the optimal functioning of the pituitary and endocrine glands, thus nourishing and stimulating your own hormone production.

As opposed to risky hormone drugs, Macafem acts naturally to nourish your glands in a completely safe and natural way, stimulating the production of your own estrogen, progesterone and testosterone hormones.”

I’m a bit skeptical though because if it helped then I’m sure I would have heard about it before now. I have been researching hair loss for almost a year now!

Any thoughts would be appreciated.

Thanks,
Angela

Puja July 30, 2008 at 11:07 am

Hi Stacey,

I’m so sorry that i wasnt able to reply to your post for so long.
Here are the answers to your post.

I am indeed very thankful that i was able to conceive knowing what i now know about PCOS. In my case metformin helped me to get pregnant since the number and size of the cysts were reduced ,after I took it. Metformin was stopped after i got pregnant. Also, the doctor asked me to go on folic acid couple of months before i started trying to get pregnant. My hair did feel and look better during pregnancy but its come back to the same thin lifeless balding state now. My pregnancy was very smooth and my daughter was born in perfect health. However i think she has inherited my hair type i think since its not as thick as her fathers..but I’m ok with it since she is a very bright child..and in any case if she is saddled with my problems of PCOS , thin hair , …i would probably have done enough research on it to help her when the time comes.
I will be going to a doc soon to check my PCOS status , although my periods are now very regular but some symptoms remain : thinning hair (similar to a man’s hair loss), facial hair problem and a new problem of roseacea which is a type of acne -not sure if it was due to pregnancy or a harsh facial or if it is due to my hair follicles being sensitive to testosterone..Have an appointment with a dermatologist and gynac soon on this issue …
Have you had your doc appointment yet?? Pl let me know if there is more queries you have …and Good Luck to you

Puja July 30, 2008 at 11:10 am

Hi Stacey,

I’m so sorry that i wasnt able to reply to your post for so long.
Here are the answers to your post.

I am indeed very thankful that i was able to conceive knowing what i now know about PCOS. In my case metformin helped me to get pregnant since the number and size of the cysts were reduced ,after I took it. Metformin was stopped after i got pregnant. Also, the doctor asked me to go on folic acid couple of months before i started trying to get pregnant. My hair did feel and look better during pregnancy but its come back to the same thin lifeless balding state again. My pregnancy was very smooth and my daughter was born in perfect health. However i think she has inherited my hair type since its not as thick as her fathers..but I’m ok with it since she is a very bright child..and in any case if she is saddled with my problems of PCOS , thin hair , …i would probably have done enough research on it to help her when the time comes.
I will be going to a doc soon to check my PCOS status , although my periods are now very regular for the 1st time in my life but some symptoms remain : thinning hair (similar to a man’s hair loss), facial hair problem and a new problem of roseacea which is a type of acne -not sure if it was due to pregnancy or a harsh facial or if it is due to me being sensitive to testosterone..Have an appointment with a dermatologist and gynac soon on this issue …
Have you had your doc appointment yet?? Pl let me know if there is more queries you have …and Good Luck to you

Kyra August 20, 2008 at 9:06 am

OMG-

FINALLY we are talking about this. I’ve a LONG history of hair loss, beginning at age 15. I am now 38. I can’t recall the long list of docs I’ve seen for this issue endocrinologists, dermotologists, herb/acupuncturists/nutritionists, etc, etc, etc. I’ve tried EVERYTHING: rogaine, Nioxin,Biotin, special herbs, and everything in between. It has been a very EXPENSIVE and devistating experience. Frankly I finally gave up and went to a hair replacement specialist. I just got so SICK of paying for MD’s and their “treatments” that did not work.

I believe there is SOOO MUCH that western medicine does not understand about our bodies especially issues related to hormones, immune system , adrenals, etc.Eventhough no doctors will support me on this, I know my issue is hormone and immune system related since it all began at puberity which is ALSO when I was diagnosed with MULTIPLE SCLEROSIS. But instead of MD’s listening, using their brains to figure these perplexing situations out , we’re left paying for these appointments and treatments (usually not covered under insurance)and left more hair loss and with compulsive behaviors ie counting hairs after each combing, showering, etc. as well as choosing resturant seating options with better angles and less lighting that de-emphasizes thinning / balding areas.
Sorry ladies that I don’t have anything positive to say about this life-long journey. It frankly has been pure hell leaving me to avoid certain social situations, activities ie swimming, outdoor activities, girl’s day at the spa, etc. . It has made me feel like “less of a woman” and depressed. Which is why I gave in to hair restoration / replacement . It is expensive as well ~$200/mo, but at least it actually WORKS. I figure I would probably pay atleast that on a psychiatrist’s couch several times a month and on anti-depressants — Ha Ha!

Despite my “success” ?? story, I am still open to learning more and trying something else to see if it truely works.

PS. Don’t know if I have PCOS to “blame” the hair loss on, but I do have major uterine fibroids and history ovarian cysts with crippling monthly periods due to pain, heavy bleeding,passing out,etc.

Any insight appreciated!! :)

Tara August 22, 2008 at 5:11 am

Kyra,
I was wondering what hair system you are using, and what you think of it? I am trying to be pro-active with this situtation as I watch more and more hair fall out everyday. So, I would appreciate any input or advice that you may have for me. Thanks!!

ginni August 31, 2008 at 1:42 pm

Hi ladies,
I’m about to take some VERY proactive steps re: my FPHL. I can either start Aldactone (w/ my 2% Minox.) OR…

I’d like to know if any ladies out there have taken the plunge and are currently taking PROPECIA for their hair loss (I’m not havin’ any kids).
Does anyone have any insight into it?

How about men’s 5% Minoxidil – anybody using that with more success than the women’s 2% solution?
Has anyone tried the REGENETRESSE? Is it valid?

I’m very anxious to get some KNOWLEDGEABLE insight into all of these things as I start my new journey. Please talk to me! Thanks, Ginni

admin September 2, 2008 at 2:52 pm

Hi Ginni,

My suggestion would be to try one thing at a time. If you started multiple things all at once you won’t know what is working and what isn’t. You can always add to your treatment regimen after you’ve been taking a medication for awhile.

I am taking 200mg of Aldactone, I *think* it has been beneficial to me…Can never be sure with hair loss ya know? I’ve taken both 2% and 5% minoxidil and didn’t have any positive results, but some women do. My doctor suggested the 5% right of the bat, but I opted to start with the 2%. The higher dosage obviously delivers more of the drug so theoretically it would be more effective if you were a responder. There is nothing wrong starting at 2% and increasing later.

Regenetresse.. never heard of the product before you mentioned it. I googled it, and all I can say is there website makes me want to run fast in the opposite direction. Lots of interesting lingo “Intensive Follicle Stimulator with Oxygen Peptide” “Sebum Clarifying Shampoo with Panthenol.” Hummmm.

Here is the deal, there really are only 2 FDA products approved to treat hair loss. One is minoxidil (Rogaine) and the other is Propecia. Everything online that isn’t one of those likely won’t work or if it does work it is probably because it has minoxidil used in the product. There are so many people selling products that claim to grow hair, hair loss is big business and people know it. So be careful. You may be thinking, well Aldactone isn’t FDA approved to treat hair loss, you are right (it is a potassium-sparing diuretic) but it has been shown to have anti-androgenic properties which can help combat hair loss. Good news for us :)

I have taken Propecia and I didn’t receive any benefits from the drug, it actually caused my skin to get quite oily and breakout. But I tried it because well I was willing to try just about anything to grow my hair.

Keep us posted with your thoughts and what you decide to do.

Best,
~Y

Joan September 8, 2008 at 3:05 pm

Hi Folks,

It’s very sad to read all of these stories, but there may be help. It is perhaps very significant that many symptoms of PCOS can be found simply with zinc and manganese deficiency. Zinc deficiency causes hair loss, poor sugar metabolism, dandruff, acne, migraine headaches, menstrual irregularities, ovarian cysts, and infertility. Manganese deficiency causes poor sugar metabolism, migraine headaches, ovarian cysts, infrequent menstrual cycles, endometriosis, and infertility. The hyperglycemia in PCOS depletes the critical antioxidants copper zinc superoxide dismutase and manganese superoxide dismutase, as well as manganese-dependent arginase, all of which are low in PCOS. As a result, diabetics lose both zinc and manganese twice as fast as non-diabetics.

The ovarian enzyme that is impaired in PCOS, causing increased androgens, is one that is targeted by dioxin and dioxin-like pollutants like PCBs and flame retardants-PBDEs. These chemicals are estrogenic compounds, all of which deplete zinc and manganese, starting a vicious cycle of hyperglycemia and continued loss of minerals. These and other estrogenic compounds may thus be the major cause of PCOS. They accumulate in fat, which would explain why losing weight helps PCOS. Zinc is also the pivotal mineral for losing weight, for many reasons.

Replenishing minerals has to be done slowly, because mineral supplementation affects other minerals. In addition, storage iron (as opposed to iron in the blood) is raised in PCOS, and copper and manganese are needed to safely absorb iron and put it into the blood, where it belongs. I don’t have PCOS but I take 20-25 mg zinc, 10 mg manganese and 2-2.5 mg copper (for usable iron, also to balance the zinc at a 1:10 ratio max.), as well as 1 tablespoon cod liver oil every day (vitamin D and omega-3’s are necessary to absorb the zinc). Zinc and copper must be taken at least 2 hours apart from each other for proper absorption.

Exposure to estrogenic chemicals is so common now (bisphenol A plastics are everywhere, preservatives in our food, flame retardants in breastmilk!, etc.) that I think everyone needs basic mineral protection. I hope someone tries this formula, it should really be beneficial, but you have to be patient-it could take a few months or more for an effect.

Joan

admin September 11, 2008 at 4:32 pm

Hi Joan – Thanks so much for all that great information. I’m going to re-post that on the main page so it can get more visibility, I think it might really be beneficial for some women. Do you take this formula for your hair loss? If so, have you seen a measurable benefit? I am asthmatic and I was told to increase my magnesium because it is suppose to be really beneficial for that. I have yet to do so, not really sure what I’m waiting for, I suppose I just wanted to research it out before taking it, and I of course I wouldn’t even be sure what quantity to take.

Great comment, thanks for sharing!

Best,
~Y

Joan September 11, 2008 at 8:15 pm

Hi Y,

Thanks so much for re-posting my information. I don’t have hair loss, but I do seem to be hypothyroid, which is another mineral problem. I have been taking zinc and copper and just added manganese, and I definitely have a lot more energy than I used to! This is not surprising, because both copper and manganese are major minerals for energy production, among many other things, and zinc is a major mineral for every system in the body. I don’t know exactly how well this will work for hair loss, but this study gives hope:

Trace Minerals International of Colorado examined the mineral metabolism of 19 patients with alopecia (hair loss). The spectrophotometric analysis showed manganese deficiency in all 19. Eighteen patients showed considerable problems with calcium absorption, and twelve patients had problems with their zinc metabolism. Specific nutritional and mineral therapy resulted in improved hair growth after 2-3 months of treatment. Blaurock-Busch, E. Wichtige Nahrstoffe fur Gesunde Haut und Haare, Kosmetik Internat. 3/87.
http://www.drkaslow.com/html/manganese.html

Another interesting fact is that a previous post talked about the good effects of biotin, and manganese activates the enzyme responsible for the utilization of biotin. In other words, manganese will help with the biotin you already have.

Another post mentioned MS, and manganese is “important in the treatment of multiple sclerosis”. http://www.ithyroid.com/manganese Copper is also low in MS, and zinc is our most important mineral for a properly functioning immune system.

As for asthma, this is another estrogen problem (for example, from being exposed to birth control pills at conception). Estrogenic chemicals lower zinc and cause allergies. Also, it is interesting that manganese can substitute for magnesium for many reactions. Magnesium may indeed be good to take for asthma, but then calcium must be taken, which competes with manganese! However, it might be a good thing to add calcium and magnesium, or at least make a big effort to get them in your diet, because osteoporosis is another potential problem with PCOS. Here, manganese, zinc and copper are again critical. One study actually raised bone density of postmenopausal women with calcium along with 15 mg zinc, 2.5 mg copper and 5 mg manganese (Strause L, Saltman P, Smith KT, et al. Spinal bone loss in postmenopausal women supplemented with calcium and trace minerals. J Nutr 1994;124:1060-4).

So many health problems keep coming back to these basic minerals that I think it’s really important to supplement them, as well as take cod liver oil and other healthy fats like coconut oil (try it!), while at the same time avoiding chemicals such as estrogens (there are many!) that deplete these minerals, and solvents (soda of all kinds, but especially diet!, decaf drinks, refined oils, and much more) that make estrogens and heavy metals more harmful.

All my best,
Joan

LaShunda September 13, 2008 at 12:25 pm

Hi my name is Shunda and I’ev read you guys stories and they are so much like mines…….I’m here to say that I been taking Prenatal multivitamin and 500mg and it has slowed down my thining. I been on them for about 2months…..I go to see the skin and nail doctor November…..after i come back from the appt…I will post you guys on it..wish me look friends…..Shunda

LaShunda September 13, 2008 at 12:26 pm

I’m sorry…500mg of vitamin c,

seema September 13, 2008 at 8:19 pm

All your stories are so supportive. I am just getting to the root (no pun intended) of my hair loss problem now. For so long I kept dismissing my sheds as normal because I used to have SO MUCH hair. But now my scalp and crown are very visible and my part has significantly widened. Finally I bit the bullet and started to see the doctors. I feel that I am somewhat hypothyroidic, and have PCOS. I feel this because I suffered from severe acne and also have been battling facial hairs (the two of which I never put together to the same problem until now). After doing some research and learning about the symptoms of PCOS, I am sure I have it. I went to the gyno to get diagnosed and she is running the gammit of blood tests. Still need to get the ultrasound, too.
From an earlier blood test, I saw that my free T4s was 1.72 where the max was 1.7. I have read on Dr Redmund’s website that if my Ts were even in a normal range, it could still be to much for a sensitive system. At any rate, those numbers look high to me. Also, my ferritin was low (29) but the “normal” range goes as low as 20. However I have read that your ferritin should be 70 or higher to grow hair. Also, just self-monitoring my temps for the last week, I have noticed that I NEVER hit 98.6 ( a sign that I could be hypo).
Due to all of this, I ordered some thyroid supplements (iodine, selenium, zinc, copper) and lysine and will add that to my normal vitamin and hair supplements and will see if I see improvement. I am going to try to fight this the natural way until I see no hope. Then I will go to the synthetic meds. But if supplementing a few lacking vitamins may trigger my thyroid to properly use my T4s and T3s and that helps my hair loss, then I would be SOO happy. I think you all need to check your hormones and vitamins and minerals and don’t just accept from the doctor that everything is “normal”. Get a copy of the results, take it home, and do some research to see if it is in the higher or lower end of normal and what that could mean. Doctors are there just to help us, but we need to take our health into our own hands.
I see my gyno again this week to see the blood test results that I just took last week. At that time, I am going to discuss with her my theories about my hair loss and see what she says about my choice in supplementing.

Trust me ladies, I definitely feel you. I cry a couple of times a week and my poor husband does what he can to make me feel better. God bless him, he tells me I would still be the most beautiful girl in the world if I became bald. I joke with him sometimes that then I could play out his fantasies and wear a blonde wig one day and red the next. He laughs too but tells me not to talk like that.
I try not to think about it, but I feel like a prisoner to the frustration of losing the hair. I try to preoccupy my mind with other things, but I can’t ignore it when after a couple minutes I feel another strand on my hand, or on my shoulder, or under my shirt tickling my stomach or chest. I see themin the sink when I wash my face or even the kitchen sink when I wash dishes. I have become the expert snooper for hairs. I can spot them anywhere, even when I’m wearing black (and my hair is black!). I try to forget about it but its impossible when I see them laying all over the kitchen floor and I had just swept that morning! I really try and I really would love to be free from the thoughts, but I can’t. I wish I knew a way.
Will keep you guys updated on my next doc visits and if the thyroid supplements help…

Joan September 15, 2008 at 7:34 am

Hi seema,
It’s so great you’re taking supplements for these problems-we’re often low in these nutrients anyway, and they’ll help with other health problems as well. Just one more plug for adding manganese to your list-besides the facts and studies I mentioned above, manganese, which is also commonly low in Americans, is essential to produce tyrosine, which is the precursor for thyroid hormone as well as for our “feel good” and weight control hormones dopamine, serotonin and melatonin. Manganese deficiency also directly leads to formation of ovarian cysts. It’s important to take copper, especially for proper iron utilization, but manganese is also required for iron absorption and for putting iron into the blood, rather than into storage. Zinc definitely helps with hair loss (zinc keeps potassium at its proper level, same action as spirolactone!) and with low thyroid, but zinc supplements actually decrease manganese (iron, magnesium and calcium supplements do too)!
All by best,
Joan (I should have called myself Joanie-there’s another Joan on this thread-sorry Joan, for any confusion!)

Julia November 19, 2008 at 2:09 am

Seema, look into Armour thyroid, it is natural porcine thyroid hormone. The synthetic version (Synthroid) can actually cause hair loss in some people. There is a theory that a dose of Synthroid under 180 mcg is not enough to produce normal levels of T3, but is enough to shut off your natural thyroid hormone production entirely, so that people under this dosage lose the little thyroid function they have. Here is a good article: http://thyroid.about.com/od/drdavidderry/l/bl4a.htm

Cathy bailey November 21, 2008 at 9:45 am

I’m studying holistic nutrition at night school and I’m disappointed to hear our nutrition teacher slam the super fruit drinks that are available both through distributors and in stores. It’s probably because he has no experience with them. I have read pages and pages of testimonials about them from thyroid to cancer. I have nothing to gain by telling any woman with PCOS that there can be help if you try these juices. I am not trying to sell anything here. Do your own search on the net and you will find other women getting help with PCOS when they drink these juices regularly. Try a search like “mangosteen – PCOS” or “noni – PCOS”, you can’t give up until you try them. They contain superantioxidants that “eat up” unhealthy cells like a pacman, to make it easier to understand. I could give you a long explanation but suffice it to say, that they slowly help correct unhealthy cells by reducing oxidative stress. cathy

cairha November 24, 2008 at 7:54 am

hi.. this is a very good site to talk about our issues regarding pcos… i am also diagnosed of having a pcos last 2007… and with most of you here i also benefit from having a hair loss… actually extreme hair loss in the front which is too embarassing for me.. i have a very thin hair since i was a child and now the worse things happen… i don’t want to lose any hair or to be bald or something…
my obgyne and endo gave me metformin, clomid, injectible fhs for my pcos because i am trying to conceive but nothing works as of now… we even spend lot of cash with those treatment.. i also complained of my extreme hair loss and my doctor just gave me diane 35… but as i heard and as i researched, they just diminished the hair fall and there’s no assurance of regrowth….. it was so devastating…my husband understands what i’m going through but even though he supported me on my syndrome, im still embarassed with him… what if by the age of 30 im totally bald? will he still look at me and feel the same way before?… i guess there will be a huge changes and i dont want it to happen because of my hair issues and if i can’t give him any child… it’s really disappointing for our part that we have to suffer from pcos… i wish God has His plan why some of us suffers from this syndrome….. I never stopped praying for a miracle… i really wanted to have kids and to look good when i have my kids….

Lisa December 6, 2008 at 9:45 pm

Hello Ladies,
I have never posted a comment on any site. I would have never thought in a million years that I would talk about my deepest pain and embarrassement. I felt so many different emotions reading your stories(saddened, relieved, thereputic and brought back some hope). I felt as though I was the only women in the world with this horrible embaressing experience. I was led to do some more research tonight, after my 7 year old daughter made a comment(with no malicious intent, just making an innocent statement). She said mommy ” I can see your bald spot. Only boys should have bald spots”. It took EVERYTHING in me to FIGHT BACK MY TEARS.

I too have PCOS. I’m 33 years old. Prior to this year, I have had irregular periods(periods only twice a year) since the age of 19, EXTREME hair loss.

I had horrible facial hear. But I went to an ENDO in Columbus Ohio, of course in tears and asked him about laser hair removal(this was 8 years ago). I was told that becuase I am of Indian Decenct and of course my skin is pegmented I could never do laser hair removal, that it would cause major scarring, and then he proceeded to give my instructions on how do shave. I was so humiliated and broken hearted. I cried for days. One year later I went to Canada to stay with my parents after just having a baby and made a decision to not to lose hope. I went to another laser hair removal center and I told them about my experience and they told me that the doctor was crazy. And that they have several machines that treat hair removal for people of color. Now I make a trip to Canada every 6 months to remove all of the lighter hairs and pay around $130(worth every dollar) Now you could never tell that i had issues with facial hair(Success Story #1).

So back to my hair story…. I was soooo tired and frustrated with talking to doctors. At the end of evey visit, i would end up educating them on the PCOS desease. So i decided to research on other alternative treatments. After researhing for MANY MANY hours on the internet and talking with MANY people at the vitamin stores, on January 2008 I decided to try a coctail of vitamins( i’m not advising anyone to do this. I am in no means a doctor, I just want to encourage the ladies to do some research on vitamins) The vitamins I take are Biotin, Evening Primrose, Omega 3-6-9 and a multi woman vitamin. I must say that this is the first time EVER that i have had a period every month. ( This is Success Story #2), I am very slowly losing weight( This is Success Story #3) My hair stopped falling out (This is Success Story #4). But I am afraid that is will never fully grow back. I believe my severe alopecia was caused by a combination of having PCOS and major stress(bad marriage, now I’m single mother of 2 living in a country without family). I have alot of new growth but i still look very bald. As a matter of fact, I have to use stupid broad head bands(I HATE headbands with a passion) everday, It doesn’t really do the trick. Someone @ my daughters school took a picture of me with her recieving a reward and it brought me to tears. The picture was under bright lights and i could see my entire scalp. But i keep on telling myself it took many years to slowly lose all of my hair, so it my take a few years for it to grow back!

Sorry about my long comment, I hope my testimony has inspired you a little and i will keep you posted!
Take Care My Sisters.

Jo April 21, 2009 at 10:56 am

I am surprised after reading about PCOS here.had been having lots of hair fall and I always felt it might be due to not proper care.
I really got surprised when my gynecologist shifted me to endrocronologist after finding PCOS in both the ovaries insteading of recommending me anything.I feel like I wasted my consultation charge also on to her.I was knowing there might be either of the two reason testosterone up (which could be worst ) and I got to see PCOS felt like OKAY much better.As I had been searching the info on net about it.
I had been having heavy hair loss yet,I am relieved to say taking proper care does help it.
PCOS management is the only option I know it,but I don’t do it(no personal interest) I know the hairy me is yakk I hate myself,yet I like that I need to take extra care,which I had not been doing.

Hair loss,I do massage,henna,amla,curd and stuffs applications help.With this I do try taking Chvyanpras(hope you get the info about it-it boosts up your immune system from inside).or you could stick to take indian gooseberry 2-3 in a days shall be fine.

Apart from it execerise would be of great help.

I get my hair and skin oily due to PCOS-sometimes in a day or two while before it was I used to shampoo only twice in a week I end up doing it more often.although my traveling compare to before is 10% for the hair to get dirty.I have lost my bouncy ans shiny hair.They are like rough and lifeless.

CARE is the only answer here.After all my online research I feel like this is the only solution.Really hated doctor when they keep transfering me to one or other and I standing with the same PCOS issue.

I need to cross my finger that the guy I like shall say YES to me and I think then only I’d really work for my body to control the PCOS.Although I know PCOS has already made my life miserable to take more care of myself.And would add up to more.I need to take care of my weight,what I shall not eat and avoid them,and still my PCOS most probably would lead me to be Diabetic type 2,heart patient,won’t allow me to be a mother. :))
so many of them,and a man I like-I am looking @ very short term na.I need to settle mylife with the one I want else it’s better to be alone-earning enough that my money n people help me manage my things.

PCOS where do thy lead me-PCOS do I see thou going away-dance,aerobics,eatry habit,lifestyle that’s what I need to do for thee.With what kind of medicine on-I don’t know,as I said my gynecologist didn’t do anything than just looking @ my report saying you have PCOS and you shall go to endocrinology department instead of giving me solution for tacking the PCOS problem. :(

Yeah,hormonal imbalance to an extent reason for your PCOS so,get yourself checked and rectified too.

I say stop compromises instead start fighting as your WBC does with any foreign bodies.

I hope you getting my point.

Danielle May 10, 2009 at 3:24 am

I have had PCOS diagnoised for about 8 years. Initially it didnt matter much to me – I was only eventually diagnoised because of my acne which has plagued me for many years and my spots were my main concern I didnt really have any other symotoms. I do now – practically all of them. However eventually I noticed extra hair growth on my face which troubled me and I did at one point start electrolysis. However more recently in the last 3 years or so I began to notice that my hair was thinning. I had very very thick hair so hair loss was less noticeable I was loosing quite alot in the shower but thought it was normal. So initially my hair was just less thick but now my parting is wider and my hairline is thin and im embaressed to tie my hair back because you can see that it is thin and my scalp. It makes cry and insecure though mostly I just want to ignore it.

What is more upsetting to me is that I am only 21 and single and I FEAR that if it gets worse I will never find anyone. I feel for everyone that has posted a comment and it does give me comfort to know there are other people out there that know how I feel. I was given the pill dinette years ago to ‘help’ my acne but eventually had to stop after I think 2 years because they were giving me headaches. I have recently been considering going on a pill again just to mask the symptoms of PCOS so I don’t feel so depressed about them. But after reading that someone blames taking the pill for their PCOS I am wondering whether this might be the same for me. When I started my period it was normal. It was normal when I went on the pill it was afterwards that the PCOS was diagnosed and the symptoms developed and I can’t help wonder if the two are connected.

Another thing that bothers me when I’m researching on the internet is the ‘weight loss’ that is suppose to help. All the literature seems to assume that women with PCOS are seriously over wieght. I am well in the normal weight range for my height. At 5ft10in I weight around 70ish kg by weight fluctuates a bit but usually within the realms of 67-74kg. If I loose the 10% or so of my body weight that they advise this will bring be quite close to being underweight? Is this advisable for me to do? Ironically if it is I would proably struggle the weight that I do have round my middle I find very hard to shift. I get mood highs and lows due to the insulin retardation that PCOS causes and often binge on carbs to make myself feel better. I personally think it would be very helpful to see a nutritionist to sort out my diet and after reading above I am going to try and see an Endo. I just wish my dermotologist had suggested this years ago because what worries me most about my hair loss is that I havent really come across anything where women have said it grows back just that the thinning is stopped. So I regret not seeking treatment earlier before it got this bad.

Good luck everybody and i’ll try and tell you what happens.
Peace x

Danielle May 10, 2009 at 3:47 am

On a sepearte note because I know how debilitating hair loss can be to your confidence and strength. I thought I’d just also mention what ways I wear my hair to disguise the fact that its thinning.

For starters wear your hair curly. I have naturally wavy hair but I encourage the curls as much as possible – this helps make the scalp less visible I find because the hair is not lying flat to my head. Also shorter hair works better because with less weight and more bounce it gives the appearance of volume. I think shoulder length hair or a bit below works well. I have tried everything from long to really short (which worked okay but I didnt like so much).

Secondly a fringe swept to the side is great or at least a hair-cut that is graduated forwards so your hair falls over your forehead. I used to wear my hair with a middle parting long and straight. I would never consider doing this now as the hair loss would be far to visible. I have a fringe that starts quite far back and to the side so as to bring the hair forward from where there is less thinning (my hair loss is mainly towards the front in the hairline and possible at the very back exaclty where a MAN would start to guy bald :( but I am a WOMAN) to cover the thinning hairline by falling forward.

A messy hairstyle (i.e. curly) that has no definable parting disguses thinning hair too! Ask your hair dresser how to style your hair without a parting they should be able to tell you how to do this. Find a pacient and caring hairdresser – I once booked a last minute hair appointment at a busy time and the hairdresser had so little time for me and my concerns that they botched it (I cried). The damage is almost undone.

Okay and finally as to hair colour. This would also depend on your skin type aswell but I am a natural sort of dark ash blonde and i find that when my hair is hlighted and blonde and nearer to my skin colour (i.e. pale). The thinning is less noticable. If I had a deep tan and blonde hair I would think that it would be more so. So my advice dye your hair or highlight it close to your skin colour. If your are fair I’d suggest going blonde – I flirted with the dark side and it made my hair look flatter and thinner. Highlights break it up and give the illusion of body.

One last thing. As to hair car I usually wash mine every 1-2 days. I do not brush my hair or comb it at all between these times and havent for years. Is fine with curly hair or messy bed-head look. Find good shampoo and conditioners you have to try out lots to see what works for you and you do need to switch every so often but try to find something that isnt to heavy. Something light that isnt too conditioning as this flattens the hair and makes it dull and weighty. Even if it reduces frizz when your worry is hairloss its not so important you can tame frizz with gel or other products if your hair gets frizzy. Using hairspray upside down creates volume and stops the hair from being so greasy quickly. I always give me ‘fringe’ a heavy load aswell so it stay it place!!!

So to summarize – curly messy hair that is short enough to create bounce and as much volume as possible (could always get a loose perm). That is coloured to match your skin tone. AND don’t overload hair with conditioning products. Hope that helps…..please let me know if anyone tries out a new hair style that makes them feel better about their hair. xx

El May 11, 2009 at 3:01 am

Hi Stacey,
I am 27 years old and also have the same problem. I started noticing some hair loss in my early teens and went to my GP when I was 16. He took a blood test & noticed slightly high testosterone levels. He just put me onto a Dermatologist who in turn put me on the Birth Control Pill and Rogaine. By the time I was 21 I was still loosing hair and the Dermatologist told me there was nothing her could do from his end and I should consider hair transplants! I stopped going to him and continued with the Pill. Still lost hair. Stopped going to the hair dresser. When I was 24 went to a Aryuvedic hari clinic. They gave me lots of oils etc that helped alot. Since I was getting results I stopped the Pill. This caused mayhem! Hair started falling like mad! Periods were erratic. I just happened to mention it to my Gyno who then diagnosed me with PCOS and put me on Metaformin and Folic Acid & the Pill. continued going to him and regulating the dosages with not much change. A few months ago I got surgery – ovarian drilling. This dramaticalling reduced my insulin levels. I also heard of natural remedies such as Saw Palmetto and Licorice and Cinnomon. I am hoping that in combination I will get lowered testosterone results in the coming months.
Still have alot of hair loss. I don’t think I would ever get married – it would just be too embaressing… Friends who I confided in just didn’t understand and usually used it against me… People at work ask me all the time why I never have my hair down… I know that there will be one day where I may not have hair at all. I just hope that I will atleast have hair for my 30th birthday.

Meera July 9, 2009 at 10:32 am

Hi Stacey,

I cant believe I have found someone going through the same thing as me. To begin my story, I was always a heavy kid, not obese, but I was overweight. Then, when I hit the age of 14, I noticed that my hair was falling out. I didnt know what was going on, and at that age, I tried to ignore it thinking that it would pass. Well, it didnt, and my hair, in about 2 years time, reduced to about 1/6 of its normal amount. I dealt with the embarresment. I was in high school- not a good place if youre visibly different. People noticed. Teachers, students, friends alike. It was so hard to make friends with people thinking that you were diseased. The friends I did make were distant, and could not even be called friends at all. I cried frequently, I didnt know why this was happening to me. While other girls were going to hairdressers, getting expensive hair cuts, I stayed away from any hair salon in fear of what my hair dresser would stay. I could never get my hair done for any school dance, not even prom. At that time, I didnt know that I could potentially have PCOS, but the symptoms were all there. I was still heavier than the normal teenage girl. At the age of 16, I was 5′ 4″ and 140 lbs. Not that heavy, but all my weight was concentrated around my stomach and thighs so it was noticeable. Then, when visiting a family doctor, I found that my triglycerides were through the roof. They were around 750, when the normal range is 0-150. My cholesterol was slightly elevated as well. I didnt know what to do. My first blood test was when i was 14. How could a 14 year old possibly have high triglycerides? We determined that it was genetic from my dads side, and I began taking fish oil and was put on a strict diet. 6 months later, my triglycerides were down to 550. However, neglect in taking my medicine caused them to increase once again. They stayed around the 600-700 level all through high school. One trick i discovered to hiding my very noticeable scalp was to buy eyebrow powder. Now, hear me out on this one. My hair is very dark brown. Therefore, I went to a local ulta store and bought a little bottle of their eyebrow powder. I used a little brush to dab it on my scalp, and you could barely tell that i was losing hair unless you looked very closely. This covered the problem, it didnt stop it. But i found my self confidence increasing because i wasnt being stared at on the street. However, the bottle was tiny and only lasted 3 weeks for 11$. While my parents kept buying it for two years, i found a cheaper solution. I went to http://www.eyebrows.com, and ordered their powder. For 5$ a tin, I could cover my scalp for 3-4 weeks.
Now, I am 19 and in college. I didnt realize I had most of the symptoms of PCOS until recently. I found your story, and I want to share mine. I have high triglycerides, cholesterol, hair loss, hair on my face, hands, stomach, back, nipple area and feet. These are places only men get hair. I have acanthosis nigricans, which is the darkening of the skin on my knuckles and back of my neck. I have insulin resistence and i weight around 150 lbs. It is very difficult for me to lose weight. I tried to for 3 months-I exercised an hour to two hours a day, and ate healthy. I barely lost 5 pounds in 3 months. I have extremely high blood pressure, around 140/90. I have a few skin tags and my periods are very irregular. To date, i have not gotten my period in almost 3 months. Im scared of whats going on with me, and apparently there is no cure. Im glad I found this website, and I found your story. THis is the first time i have shared it with anyone. While i have found people who accept me for who i am (more so because of covering my scalp with powder), i cant help but feel that I jsut want to be normal. I want all of this to go away. I want to look like many girls my age-beautiful hair, skinny, and virtually hair free.

As of right now, I am on Metformin and Spirnolactone which are supposed to decrease the male hormones in my body. I have only been taking it for 6 months, which is a short period of time to really tell. I am only assuming i have PCOS, i will confirm it next month when i get a few tests done. I try to cover my scalp, and i wax the hair off in places that it shouldnt be in. Its hard, it really is. But i guess the only thing we can do is learn to cope with it. Please reply back to me, I would love to hear from you and see how you are doing. I hope you are well

Meera

Gab July 10, 2009 at 8:07 pm

Hello everyone!

I just found out I also have PCOS. So, I started noticing when I was a teenager that I had thin hair, my dad’s side of the family has thin hair so they just kept telling me oh, it’s ok..it’s hereditary. I had an aunt who had very thin hair and now I know why…yeah, it was the genes, but also she had PCOS and she never knew it! This is how I know, her hair was so thin, she always seemed too anxious, would get mad easily (indicating high testosterone), she had dark patches on her arm pits and knees, carried most weight around the waist, and always had issues with her periods. Unforunately, she developed cervical or uterine cancer and passed away 3 years ago. I feel really sad that she never knew what was going on with her.

I am 25 years old. When I was 19, I went through a rough time in college and developed anxiety, I went to an endocrinologist, but said everything was fine, then I went to a psychiatrist and prescribed lexapro. Ever since I took the lexapro, I felt great! I was myself again. I did notice though that I was gaining weight, but I attributed it to my happiness, engagement, then marriage. I always had pretty regular periods too, maybe a day or two late or early, no big deal. Once, I went to the gyno and said that I did have a couple of cysts, but NEVER told me that I could have PCOS.

Anyway, a year after marriage, we wanted to have a baby. We tried in August, by September I was pregnant! So happy, by October, I had a miscarriage. Didn’t know why, doctors did not care to look for reasons, just said it was very common. By November, I got pregnant again! and tomorrow is my baby’s first birthday! Three months postpartum, I started shedding my hair, by 6 months after it had started, I went to a dermatologist (first time, never had had skin problems, actually really nice skin!) anyway, I told her about the baby and the shedding and she didn’t even look at my head! she just said, oh, it’s the hormones, this phase, telogen effluvium, if you’re still losing hair by 2 more months, come back. I was relieved to know it was just hormones and it would go back to normal…well, no it did not.

I went to a friend’s house and she said to go to an endocrinologist, out of the blue! (it was meant for our kids to have a playdate!). I went, it turns out that my testosterone levels are within normal range (this is why the previous endo did not see anything wrong), but the current endo said that even though they are within the range, it was too much for my body and right off the bat, he could see I had PCOS. This explained the miscarriage now, but I still don’t understand how I got pregnant twice the first tries…I had never been on birth control, he prescribed yaz, metformin, and spironolactone. It’s been 3 weeks so I haven’t seen any good effects yet, but I am truly hoping it works (I haven’t started the yaz though).

I would have never have known that I had PCOS, I don’t have excess hair, no skin tags, BUT i have lots of hair loss, my underarms are a bit darker, and my boobs are very small (awlays have been, maybe because of the excess testosterone?). Anyway, it turns out that the anxiety may be because of PCOS and not my nervous system…but I’ve been on lexapro for 5 years now, it’s hard to get off. I am really worried about the hair, it’s so easy for everyone to say, oh there are other things to worry about, or it will grow back, or you’re not balding, when everyday you see strands of hair falling out. I also use Nioxin.

I have read that for spironolactone to work on the hair issue or grow it back, you need to be on 150-200 mg daily, I’m only on 100, I don’t know if my endo is going to increase it when I go back next week or if I’ll stay in that range because I don’t have many signs of PCOS. I talked to his PA and said that it was unlikely he’d incerase the dose because I don’t have acne, excess hair (anywhere! I can go 3-4 days without shaving my legs or armpits), or skin tags, so are there different levels of PCOS? she said to give the meds a couple of months to see a difference. He also told me to lose 20-30 lbs and put me on a 1200 cal diet. I did really well the first week, but it’s been tough. I’m 160lbs and 5’2″. I gained 26 lbs with my pregnancy, but I was 168 when I conceived, so I’m thinner now (but don’t know why I Don’t look it).

I hope we all get some answers and comfort. It is so tough, it’s inevitable to look in the mirror, I find myself now, pulling my hair (very gently though) to see how many hairs fall out. i’ll keep everyone in my prayers, tell anyone you know about PCOS, it is so easy to go undetected and can cause many problems. I wish my aunt had known, maybe she wouldn’t have developed cancer.

gaby

Pooja malik July 13, 2009 at 8:51 pm

Hi Stacey,

I am not sure whether you will read this comment or not but if u do it will halp you. I had PCOD at the onset of puberty but as with you was not detected till i was in college. I developed hirsiutism( body hair) and had loads of acne. I was slightly overweight ( thought was my body type) but had my periods coming in after 50 days. But one of the good endocronologists had me go through an ultar sound and found i was PCOS/PCOD. The battle started then. Now please do not take this info as prescription but go and ask your gynea about this line of treatment.

I was put on Contraceptive Pill and ALDACTONE 100 mg for 2 years or maybe more i do not remember. But that actually treated mequite a bit….but i was told to do mild excercise with it so that i do not gian weight….My Acne improved in a month…..my hair shed simply stopped by that time….My skin texture improved greatly….my hirsuitism was graetly controlled in about six months…..My hair grew back on my head …u can see them coming in about a year if you pull back your long hair you can see small hair coming out of follicles…..I even lost weight and had a very good figure…( i made sure i did breathing exercise and 10 km walk daily..It was a great feeling . I was cured of PCOD for about three years when i got married at the age of 25 and had a son when i was 27 without any medical help……( due to the treatment) ..Though it is a dirty disease and i have got it back with a bang but i was able to have a healthy child and it helped me get my confidence back…the secret is to eat carefully (toughtest part..i am a foodie) No Pasta…no burgers..no ham …read red meat …stick to vegeis….soup ..chicken and bread ( wheat) ….try oats they are great to loose weight and control insulin resisitence which is a part of the pcod package…..hoe all this info helps you.

mail me for any queries.

jane August 23, 2009 at 11:09 am

hi, i am 16 and i havent started my periods yet, my two sister began when they where 13, my mum also.

i was a little worried when the doctor reffereed my to the gyno, they did testss on pcos but it came back negative which was good. but i am still worried. i have a lot of belly fat… but i am quite skinny, its like puppy fat i guess, also my leg hair and armpit hair grows rapidly, i shaved my legs on friday evening and today (sunday) i need to shave again. my arpits never go clear i still always have dark speks.. this might be normal … i dont know. also i think i may have OCD which causes stres.. i think this may contribute. there are a few other minor symptoms also. but i just worry about these things… often too much but i just wondered if anyone could help or give me advice… also i cant face up to telling my mum i think i have ocd so i just have to try and live with it… some help please :)

Danielle October 18, 2009 at 8:08 pm

Wow, I just found this site from a random search. I have been having many problems with my periods over the years and my doctor has just continued to tell me that it’s normal because they have always been irregular and heavy. I have had acne for years and have tried EVERYTHING! Only recently when I have stopped taking the pill have I noticed clumps and clumps of hair falling down the drain… Along with this, my acne has worsened and I keep thinking what is wrong. My doctor also blamed my sometimes absent periods on my exercise and diet. I have an appointment this week to find out the results of my hormone tests which I requested. After seeing all of these stories, I am almost convinced I have PCOS, however, I am hoping not. =( Thank you for sharing this.

angela October 20, 2009 at 1:19 pm

my hair started falling out when i was 16 but this stopped when i started taking the pill. I came off the pill in my early twenties and had occasional problems with increased hair loss throughout my twenties but it was only when i hit 30 it became a real problem. It really thinned on the sides and along my hairline and i also developed hair on my chin. After doing a bit of research on insulin resistance i lost 33lbs on a low carb diet and exercise over about a year. Initially the weight came off really slowly-like half a lb per week or none at all- and i felt like crying sometimes but after a few months my metabolism seemed to pick up and it came off quite quickly. Before losing weight my testosterone levels were 4.8 (my consultant told me it should be between 0.2 and 2). It’s now 1.3. My cycle is pretty much bang on 28 days each month. My facial hair is around 50% reduced and my hairloss has slowed down but i’ve not noticed much regrowth. In the last month i’ve started taking nourkrin tablets for my hair. It’s supposed to be a good 4 months before you start to notice any regrowth. Has anyone had any success with this? Don’t know if anyone else has noticed this but i find alcohol seems to makd my hairloss worse.

angela October 20, 2009 at 1:26 pm

sorry forgot to mention i have pcos (as if you couldn’t guess ha). Was diagnosed via bloodtests and ultrasound in routine exams prior to fertility treatment. Before losing weight and lowering my testosterone i was told i was “sub-fertile” but am now ovulating normally so there is hope if anyone’s worried about their fertility.

Kristy October 22, 2009 at 4:42 am

My doctor put me on spironolactone for my hair it really works well. I stoped taking it because it upset my stomach but my hair is now all thin again ( which proves it worked) so I am just going to try it again. Hope this helps

Heather November 3, 2009 at 2:49 pm

Hello,
Ive been dealing with pcos for about 8 years now. Ive been to 6 doctors and still have not had a lot of success. I sometimes go for a year at a time with a constant period, including cramping, pain, very heavy bleeding, anemia, heart problems, dizzy spells, etc. The first 3 doctors simply said it was “normal for me”. Thank you, heres your bill. One doctor actually told me to wear a pad and take some aspirin! That was his diagnoses! Ive had ultrasounds and biopsies. The most recent biopsy hurt so bad I was crying so she stopped. Then I was sent to my 6th doctor for further treatment and he simply said I would have to try birth control for the 3rd time. He wouldnt listen when I told him both times before it just gave me cramps but didnt help anything else. Ive been on Progesterone 3 times too, which does help for a while but the last time only a week and a half, then my period was back. We dont plan on having children so thats not an issue but it is definitly affecting my life. I was fired from my last job because I was so tired from the anemia and felt crappy all the time. I had to go home to change twice because the bleeding was so heavy. Finally they said Id gone over my attendance limit and I was fired. Now im trying to find a different job but whos gonna hire me when my hair wont stop falling out? Im considered obese by most doctors standards, Ive always had skin problems including acne and seborrhea. Im sick of being sick. Sometimes I wish it was more serious so at least they might be able to fix it! Of course I dont really want to be more sick (my mom died of cancer and my dad died of diabetes) but Im tired of just dealing with it all. Last night I was sitting on the couch with my boyfriend watching a movie. He is a wonderful person and would never say anything to hurt me but he asked if my hair is still falling out like it was. I told him ya its been worse lately. Im losing a lot in the shower and Ive notice even my eyebrows are getting patchy. He said I need to call the doctor or go buy some Rogaine or something. I asked him why? Is it bad? Do I have another bald spot? He wouldnt say anymore, just that I should see my doctor again. I pulled up my hoodie and pretended I was watching the movie. I was trying not to cry. This sucks. I cant afford to go to a real doctor because I dont have a job. Im on unemployment and he has child support for another year so were strapped. I dont know what to do except buy a hat. I wore my hair pulled back all summer to hide it but now you can even tell how thin it is then. Im gonna try Rogaine. I allready asked my doctor about the problem and she said theres not a lot I can do about it. She did give me a prescription that can help it stop falling out though. It doesnt make it grow back but at least maybe I wont lose anymore. I havent been able to get the prescription filled yet because I just cant afford it but I thought I would let everyone else know the name of the medication. It is Spironolactone 50mg (#30) then it says T po daily. When I do try this I will have to get blood tests before hand. I dont remember exactly why but I think she said it can damage the liver. Joy. Anyways, sorry about all the complaints but it feels a lot better just to write it all down. Thanks for the support. Best wishes to you all.

nunni November 13, 2009 at 12:29 pm

Hi..
I was really moved by all the stories shared. I am 32 yr old who was diagnosed with PCOS in my early twenties. The problem started with excessive facial hair and wt gain. This was somewhat controlled by laser therapy. I have had 4 sessions per yr since i was 22!! and still using it religously. At 30 I started having significant hair loss but its only in past few months where I its gone out of control. I loss more than 100 hairs per day and I am very thin at front but also have global hair loss even at the back.
Over the years I have gone to many endocrin. and gynae but have found them very unhelpful.. I have taken vitamin supplemention and recently gone to hair loss clinic and started meso therapy (which are a course of very painful injections) and Low level laser therapy which is supposed to arrest the hair loss and maybe even promote hair follicle growth. I have not seen any benefit yet and maybe even more hair shedding since starting treatment. This problem has really affected my life and cry myself to sleep most night.
I am considereing now the pill and spironolactone or finesteride or saw palmetto.. I know the effects are not noticable until over 6 months so I know I have to be patient. Has anyone who tried this regimen actually found it worked for them?
I wish all the ladies good health and an end to their struggle.. I will let you know how i get on with treatments. Thank you
nunni

Angie November 17, 2009 at 6:12 pm

Hi everyone. I ws diagnosed with PCOS about 3 years ago when I was put on a combination of pills including birth control, spironolactone, and e.mycin(antibiotics). This stuff did alot to clear up my skin and I also noticed that even though my hair was still shedding, it wasn’t as much as before I started this therapy. I didn’t want my body to be dependant on these pills so I decided to stop taking them for about a year, and this was quite possibly the worst thing I could have done for my hair. Everymorning when I wake up, I see hair all over my pillow, on my hands when I run my fingers thru my hair, and even more in the shower. It got so bad that I thought I’d be bald in just a few months. After excessive research, I found out that there are soo many different factors that could be affecting my hairloss. Number one- I switched to a natural shampoo that doesn’t contain sodium laureth sulfate in it(this dries out your scalp making your hair fall out), number 2- I began rubbing emu oil on my scalp every night before going to bed(this is apparently the best oil for hairloss), number 3- I began taking birth control and spironolactone again. With these 3 changes I’ve noticed a DRAMATIC decrease in the amount of hairloss! I can’t stress enough how much this has done in terms of being able to retain the hair I have left on my head. It’s only been about 2 months now so I haven’t seen any regrowth, but at this point I’m just glad to see the amount of progress I’ve made, and can only hope that others who may decide to try this(if they already haven’t) experience the same results as I have. I’m gonna start taking an organic multivitamin supplement along with biotin in hopes that this will make my hair look and feel healthier, and more importantly, help some of my hair grow back! Good luck to you all and I’ll keep you updated on my progress with the new vitamins.

Anjalee November 25, 2009 at 1:46 pm

Hi all,

I was diagnosed with PCOS at 29. Before that I never knew I had it. Maybe because I had a very healthy lifestyle. I would exercise everyday for two hours and walk whenever I had to go a short distance instead of driving. I was living in Mumbai then and was physically very active. My dietary habits were also much healthier. I used to eat less of rice, breads, starchy food and more of fish and fruits and vegetables. My periods were on the dot, though at times they were heavier, but it was fine. I had a few hairs on my chin (8 actually) and we attributed it to my genes as my paternal grandmother had a little facial hair.

After coming to US, I was leading a sedentary lifestyle. Eating more carbs, driving where I need to go, little exercise (45 minutes treadmill on weekdays). I gained weight after being here for 2 months and my hair started falling out. I thought the hair loss and dandruff was due to the harsh cold weather here. I missed my periods and thought I was pregnant. But alas! I realized that the missing period was due to PCOS. My doctor told me that my main weapon against PCOS was to loose excess weight. I went on Atkins diet, which was the in-thing then (though I had my own version where I had whole wheat breads and lots of leafy veges. I did not eat red meat but only lean chicken, egg whites and fish). I also started out on Metformin and prenatal vitamins. I lost a lot of weight in a couple of months and my periods got back on track. My hair loss was arrested and infact it was bouncy, glossy and black as ever again. Honestly, I could see tiny curly new hair all over my head. As I was soon going to hit 30, we did not want to wait to have a baby and went in for an IVF and I now have a 22 month old daughter. Though my doctor had told me if I maintained a normal body weight, I could get pregnant on my own.

Though my daughter keeps me on my toes, my dietary habits have taken a dive. For lack of time,I eat anything I can lay my hands on when I am hungry. As a result I have started feeling the ill-effects of PCOS again. Though my periods are on the dot, I have facial hair and hair loss. In fact from today I have started back on low-carb foods and I am exercising everyday. I am soon going to be back on my Metformin, which I had stopped after my trimester and as I was breastfeeding. Also, I started taking my prenatal vitamins.

My goal: I want to be a normal woman if possible (I know most of you will understand what I mean). I want to have a healthy weight to prevent myself from getting any other diseases like diabetes or heart problems. I want my daughter to be proud of me when she grows up and not be ashamed of having an obese and balding mom (no harsh feelings, I am speaking of myself here). I want my husband to have the same beautiful wife he had married.

I know that attaining a healthy weight is within my reach though it is tough for women with PCOS. I have found that exercise and diet helps and I want to go ahead and make it my lifestyle. It will also help my daughter in getting used to a healthy lifestyle at an early age.

In my case weight loss had helped in the past. If you are in a similar situation, please try losing your weight and maybe it will help you too. Also, Metformin is your best friend if you have PCOS. Every woman with PCOS is different and could have different symptoms but if you have weight to shed, PLEASE SHED IT and you will be happy with the results.

I have seen a little bit of me in each and everyone of you. Hope my experience helps some of you.

Anonymous January 5, 2010 at 8:59 pm

IN A NUTSHELL:

Flutamide – 125 mg – 3 times a day = 375********
Spironolactone – 100 mg – 1 1/2 times a day = 150********
Ogestrel – Birth Control – Every Day for MANY MANY MANY years******
B-12 1000 mcg sublingual vitamin
Biotin 1000 mcg
Bioton 5000 COMPLETE
Nioxin Cleanser
Nioxin Scalp Therapy
Tricomin Revitalizing Shampoo
Tircomin Restructuing Conditioner
Tricomin Solution Follicle Therapy Spray (Copper) – VERY EXPENSIVE!!

I am LESS than 100 pounds.

Dermo states there’s nothing I could do. States To Try Rogaine.
Endo states all tests are normal, we are giving you all the meds for pcos (aldactone, flutamide, birth control) – years and years and years seeing endo, no results.

Have been diagnosed with PCOS for MANY MANY MANY years. SEVERE unwanted hair, especially on chin/facial. Never had a hair loss problem until my LATE 20’s and it now DEVESTATING. As you could see from the list above, I have tried EVERYTHING. SEVERE hair loss in shower, SEVERE hair loss in brush, continue to fall out for YEARS, don’t believe there is hair growth. I used to have VERY VERY THICK HAIR and a LOT. Now I am considered to have THIN hair and receding hair lines. I am BEYOND frustrated as all the things I am supposed to take and do does not help. Doctors don’t have a clue. PCOS in family. Cry ALL the time. Scared to death from hair loss.

Anonymous January 5, 2010 at 9:02 pm

O. I forgot to ADD:

Nioxin Scalp Activating Treatment – use: Everyday until I run out.

Peggy January 27, 2010 at 10:49 pm

I was diagnosed when I was 30. My hair loss is so much more noticeable like so many I read about. I can see my scalp through the bangs and the part is also wide on the side and near the crown of my head. I use Toppik, Which you can buy at sally’s beauty supply, or online with amazon and others I am sure can be found with google. It is a hair fiber looking powder that comes in 12 different colors. I have dark brown, I shake a little into the parts of my hair where I feel like to much scalp is showing. It literally makes my day. I do Not go out without using it or wearing a hat or I also have a top clip in hair piece by Raquel Welch Mine is called the Chameleon. The Toppik powder has never run when I got got in rain or snow, and it has never come off on my pillow. It is magic for me while I continue my search on how to get my hair back. I have resorted to the raquel welch hair piece because it is so natural and beautiful on and I feel so like, well, Me. I cried when I found it online, finally something else to boost my esteem. Wigs.com has them as well as using a search of her name. Renee of Paris has a long top piece that is natural looking also and is a bit loner length. The down side to those two piece? They cant be heat styled. I don’t seem to care. They both run about $95. There is now a new raquel welch full wig that is just around $100 and its true to life synthetic yet heat styleable. If I cannot stop my hair loss this will be my next affordable compromise for the time being.
I thought you all might want to know that you do not have to walk around looking at your scalp, we can hide her for now.
I was on metformin for a year but my testosterone went from 107 to 127 while I was on it, I was also on the pill and I didnt see any results. I tried aldactone briefly but it hurt my stomach. I have tried to get weight off. I had a baby when I was 18 and put on 100 pounds since then, That was 17 years ago. I cannot seem to make a significant dent in my pounds so far. I am not unhappy about the wieght, as much as I am the hair loss and the nightly routine of tweezing my chin hair.
I suffer from these symptoms:
fatigue, hair loss, facial hair, darkened spots of skin on my face, weight problems, pelvic pain and more, I do however have a regular period.
I work in a salon as a manicurist, and none of the hairdresser know how to help me, either with a style or color or cut, so I resorted to finding it all on my own. I have just recently gotten myself clip in extensions to make my hair fuller and longer. I don’t wear them everyday but I wouldn’t want to be without them now.
I sure hope we all remember that we are still something special and amazing even if our hair lacks that romance novel cover requirement. My husband loves me anyway and he says its all part of life. I smile at that. I know I am still beautiful, and so are you all.
I will be going back to the endoc to see what may be new and or need to restart treatment vs just leaving it to its own device.

Nikki January 28, 2010 at 9:37 am

Hi Stacey,

I highly recommend you see a reproductive endocrinologist or just a regular endocrinologist if your insurance won’t cover the reproductive one. Don’t waste your time with these dermatologists. Since you haven’t tried Metformin, I recommend you ask the endocrinologist about this treatment. It usually takes up to 6 months to see results and at least it is shown to help you ovulate – if you ever want to have children. Some women with PCOS don’t ovulate and this is why they go on Metformin. If you don’t try anything, I am told the hair follicles will eventually die and will never regrow hair. I wish I had a solution for everyone but each case is different. Good luck.

Nikki February 24, 2010 at 11:02 pm

Hello,
Reading everyones comments and stories, it was as if it was myself. I have been going through this same thing since I was 20 years old and I am now 26. I have tried many products as well and have went to the doctors, but most of the doctors I’ve been to really do not know much about PCOS. But I am going to continue to search because I have prayed for this blessing and its coming so when I find it, I will be sure to let the world know!!!! Also I would like to share with everyone that I wear wigs. I get a lot of compliments on them, no one knows about my thinning hair and I have regain most all of my self-esteem. They make wigs for all different types of hair with a variety of colors and styles. As well as you can get wigs fairly cheap and you can wash them.(So they last a few weeks) Most are light weight and easy to wear with a 1 of 10 chance of it just coming off. I have been wearing them for about a year now and that was my biggest fear but its never happen. At first I felt like everyone knew, but they don’t and most people do not even know that I wear a wig until I tell them, but I’ve learn over the months how to pick them for myself. Well good luck to all and GOD BLESS you all for sharing your story.

Kasandra February 25, 2010 at 2:48 pm

I was diagnosed with PCOS about 4 years ago, after dealing with a year long period. I tried at least 6 different birth control pills, before finding one that worked. I, too, have had several embarrassing moments at the salon, because of my PSOC related hair loss. I had really long hair, and decided to get it all cut off since I figured shorter hair, with layers, would give me a fuller look. She put my hair in a pony tail, and made a comment about how thin the pony was. She then cut it off and went to EVERY hair stylist in the salon to show them how thin it was. It was humiliating. They all laughed and discussed how they’ve never seen such thin hair before. I hate getting my picture taken because the flash from the camera just reflects off of my nearly bald scalp. My dermatologist just said I have “female pattern hairloss” and my only hope was Rogaine for women. I’ve been on it only 3 weeks, and haven’t seen any changes yet. I’m not very hopeful. I have lost 50 pounds, and it hasn’t helped. I’m continuing to struggle in my up and down weight. My OB-Gyn told me that, yes, losing weight could tremendously help, but that losing weight with PCOS is extremely difficult. He wasn’t kidding. I feel like it takes about a week to lose ONE pound, and a day to gain it back. I have no sex drive, which of course drives my husband crazy. I have NO motivation. I just want to sleep ALL of the time. I’m depressed, even with the antidepressants I’ve had to go on. I have a mustache and a tummy trail that I do my best to keep waxed. I have mood swings. I’m 27 years old and have acne like an adolescent. I was put on Metformin, but I kept blacking out from blood sugar crashes, so I’ve stopped. I’m also on birth control, which I’d like to quit. As I said, I’m 27. I’ve been married 7 years and would really like to have a baby before I get much older. Will I ever be able to? I don’t know. I get tired of people who have never dealt with this problem telling me I’m over dramatic and not understanding that my mood swings are uncontrollable. They don’t understand that in my mind I really do WANT to have motivation to accomplish things, but some how it’s seems physically impossible. My husband has gotten his own complex thinking I do not find him attractive, since I have no sex drive (and trust me, I do find him attractive — good looking guy. lol…) I struggle every single day with this problem, and feel that I have no support from family or friends, since no one else can understand it. I live in a small town, and the ONE hospital we have here just doesn’t understand new medical issues, and yes… in this town, PCOS is very new and very little talked about. Sometimes I’ll tell a new doctor that I have that, and they’ll look at me almost as if saying, “sure, you’re using some phony disorder as an excuse for your weight. Go eat another piece of cake, you fat cow…” Someday I hope that I can get past this. I will continue to do my best to control my weight and I hope someday I’ll be my happy self again (hopefully with a full head of hair.)

Wow, I think I’ve vented enough for one day. :P so glad to find a place I could vent my frustration without feeling looked down upon.

Jade February 28, 2010 at 6:24 pm

I’ve known that I have PCOS for about five years now. I am 21 years old. I actually diagnosed myself because the doctors in my area really don’t know much about PCOS..that’s putting it lightly. I have been getting more and more upset about this over the past year. My side effects are getting worse. I have Hair loss, Acne in other places more private but also my face. I do not get a regular period. I have severe pains from the cysts. I have VERY over weight, I used to be about 180 lbs and I am 5’8″ now I’m am 315 lbs. I have gained all my weight from PCOS, I did nothing different, I didn’t start eating worse or not exercising I simply just started putting on the pounds. I’ve never felt as bad about myself as I do now, I can’t believe I’m 21 and I have so many problems PCOS isn’t my only medical problem but I won’t go into the other things. I’m very frustrated that every doctor I see shrugs PCOS off like it’s nothing, they don’t care and they don’t know what to do about he hair loss on my head and hair growth on my face. I’m at the point where I want to give up but I’m too young to be giving up. My self esteem is at it’s very lowest and I’ve always been a positive person and this is just dragging me down. I know how everyone feels on here and I wish no one else had to feel the way I do. Not being able to have children is the least of my worries at this point, at first it upset me but honestly I don’t think that is the biggest thing about PCOS there are so many other bad side effects that come with it. I wish I had some answers for people on here but I have none, I’m also someone who is searching for some type of help but I’m afraid that I’ve just came here to share my feelings. Thanks for listening. I wish everyone the best

Serrah February 28, 2010 at 10:24 pm

god..it’s like I am reading my own life story on this page :(
I am going through hell currently. I too have PCOD , taking medicines for the same and periods have been regular since 2 months now. I too have thinning hair and it embarrasses me to death. HATE the look of me when my hair are all wet…miss dancing in the rain when a kid :(

I felt humiliated when I once went to this hair salon some months back and asked them what hairstyle might suit me and there the hair dresser was like “I am afraid there’s nothing really left to style, may be u can just trim them” . It was such a rude comment and I was so hurt that decided never to go to a hair dresser again. I have never been to one since months now just to escape embarrassment. I got scanty hair on top of my head. I have been trying what not to make it look thicker but in vain, they only fall more. Even my family is not being understanding and my sis actually makes fun of me. Even my Mom can’t see what I am going through which is making me even more depressed. I literally don’t have anyone to tell what I am going through and cry my heart out. HATE it to death when people notice my scalp showing thru my hair and hate it even more when I see that grin on girls’s face who are my age and hell I even once caught a guy noticing my showing scalp :((

It killed me :( I can never ever be comfortable around guys anymore.

I am 25, Single and looking for a job. My thinning hair are the reason I have developed low self esteem. I look good otherwise and my weight is normal too…its just these hair that are making me feel down ALL the time

I don’t want to be in a relationship or even get married ever because of how I feel about my hair. Also I don’t think a guy’s ever gonna love me :(

So I kind of have given up on love too.

Of all the posts above I have read , most of them have talked about only the problem and hardly anyone has talked about something that ACTUALLY worked for re growing hair.

Also from the posts above I came to know that an Endocrinologist is one that actually can treat PCOD so now I am on my quest to find the best one in my city.

Hope I find him/her soon as I don’t want to delay it anymore :(

Doris March 3, 2010 at 12:08 pm

I have PCOS and am 56. I thought my problems would end after a complete hysterectomy but the scalp hair loss and facial hair remained and it has been 20 years since my surgery. I have lost weight but it has not helped. My hair loss frames my entire face and the top of my head. It has been a very devastating experience. I have tried many things so I thought I would list them:
Birth control pills-did nothing but make me nauseous
Estrogen now-has slowed the hair loss, but no regrowth
Spironolactone-has slowed the loss, but no regrowth
Fenesteride-did absolutely nothing but cause headaches
Nu-Hair-Nothing
Viviscal-Nothing
What seems to have helped: applying pure emu oil to scalp 3X a week at bedtime. It is very oily. Taking CoQ10 one pill one time a day. Also a regular multivitamin. What I plan to try: Thymuskin. At $120 a bottle it is too expensive for me now since I am out of work but some studies say it is effective. Also plan to try: Bosley Profession Strength Hair Follicle Nourisher. I didn’t realize there were so many people out there with the same problem.

Cassie March 14, 2010 at 10:32 pm

Hello Ladies,

I have almost hit my breaking point with this PCOS, I have not really reached out to anyone and am about to go crazy not being to talk to people going through the same thing. I have all the same issues that come along with PCOS and the thinning hair seems to be my biggest battle. There are some days where I have reached for the razor to just shave it all off and get me a wig so I dont have to worry if my hair is going to lay right the next day. I am an In-Court clerk sitting right next to the Judge and most the time my head is down and all’s i can think is that people are staring at the top of my head. I am open to any advise or hairstyles that may help with my “combover” I call it. I dont know if cutting it short helps and am to scared to just do it, since my hair dont exactly grow!

Facial Hair!!! Oh boy dont get me started on that………
I am currently on metformin, and have recently had a bunch of tests run to see where my hormones are at. I fear that to will be a dead end even if we do know where they are at.

I am curious to see where people are at in there journey with this and have any pointers……

Thanks :-)

Carla April 5, 2010 at 11:33 am

Hi, I have PCOS and have the thinning of the hair as well as weight gain I can’t tell you how much money time and up set I have had with this condition. I am 23 years old never had a boyfriend and only have a few friends I don’t go out at all as I hate my body and appearence. I would love to go into the beauty buisness but this condition holds me back big time with the effects it has on my body and mind. Last year I had enough of doctors fobbing me off telling me that I had to put up and basically shut up and get on with it. By this time I am at my lowest of lows and didn’t want to go on. I have tried so many different products like Regain (Gave me very bad panick attacks) Dianette (Made me put on over a stone in weight) Rivita hair (Didn’t do anything) The only thing that is a short term fix is a hair powder that covers the baldness but if you get wet it runs! I take Metformin for many years I also take 1000mg evening primrose 100mg b6 I also go to a private Homeopath which is very expensive to do. On my weight I lost 3 stone last year on a diet of nothing (Sure slim £450) but since then put on a stone but still eating the safe foods! I have had personal trainning that have gone into 1000 any one with pcos need to cut down on the carbs thats one thing I do know !!!! (Which I really crave) If anyone can help me or I can help anybody then I would be grateful as I have already waste so much time I would like a life xxx

Alison April 9, 2010 at 9:29 am

Hi all
I am so releived to have found this page. I know I am not alone now. I am 28 years old living in London , Uk and have been suffering hair loss since I was about 15 years old. mainly the top of my head. I used to have such thick hair as a child and it started falling gradually. I too avoid lights in restaurants and wont let my long term boyfriend see me with wet hair. It is always tied up in a ponytail. I was diagnosed with PCOS yesterday which may be the reason behind it. I went to a hair specialist in January and ended up getting Minoxidil which is costing me £65 a month. I am also on iron tablets. I also use NANOGEN hair fibres. They are truely amazing and if i want to have my hair down, I use them to cover my scalp and make the hair look thicker. Nobody can tell the differnce even close up. They are waterproof and end proof and come in many shades. I only use them for special occasions but i highly recommend them. I am seeing my GP on Monday to discuss my PCOS but I’m not sure anything can be done. I hate how some people look at you funny as if hair loss is not a big deal, but it is!

KVC April 10, 2010 at 8:34 am

Alison: what treatment are they recommending you to treat your PCOS? I have recently been diagnosed also. Have been losing my hair since my first period almost (around 13), am now 22. I have always been slim and had regular periods, which is why they never suspected PCOS.

From the ages of 16-20, I was one Diane, an anti-androgenic BCP which did work to stabilize my hair loss. I took a bold leap of faith and got off it last year, and it has been awful for my hair ever since.

Another thing I discovered over the last year is that I am insulin resistant. I don’t know if PCOS has been properly explained to you, but whether you are thin or overweight, most of us “cysters” have a fair degree of insulin resistance – which is the root of our cysts, our hair loss, our acne, our extra hair growth on other body parts. For this reason, many endocrinologists suggest Metformin (diabetes medication), to attack the insulin resistance. It is supposed to help even periods out and reduce testosterone production (which gradually kills hair follicles), by making our bodies more sensitive to insulin.

The link between insulin resistance and PCOS is fairly established, but you will find a lot of doctors, and particularly dermatologists, who have never heard of it. It is for this reason that you must make sure you see an endocrinologist and test for insulin resistance with an oral glucose tolerance test (it’s 2 hours long), if you have not done so already.

Right now I am on Metformin, but I doubt it will have much effect on my hair even if it increases my insulin sensitivity. I can hop back on Diane 35, but I am so afraid of going through the shed I have gone through over the past 5 months, the next time I go off the pill (for pregnancy or whatever it may be).

I have also ordered the Insulite System. It is honestly worth looking into. It is an entirely herbal system which works to reverse the insulin resistance causing PCOS. If you google it, you will find hundreds of satisfied women with PCOS who have resumed their periods, gotten pregnant, and lost many pounds. How far it will work on hair, I do not know. The problem with PCOS hair loss, versus PCOS body hair growth, is that once is it is gone, it is forever gone. I wish someone had told me my hair loss was PCOS related at the age of 14 – I would have attacked it then. Over the years my follicles have died and there is little hope of getting them back. Maintenance is the most I can wish for.

Anyways, good luck your consult on Monday and definitely try to and find out whether you are insulin resistant. GP’s are not necessarily the best people to go to for PCOS – I personally found that the combination of a endocrinologist/dermatologist (and in that order), was the best thing to do. They will lay you out all your options for you to choose your plan of attack.

Also, have a look into the Insulite system to see if it could work for you before jumping on medications. As for Minoxidil, I am sure there are cheaper options on line. I live between London and Belgium, and get my minoxidil in Belgium for about 8 eur. for a month of supply.

Ruby May 3, 2010 at 10:03 pm

Hi everyone I am glad to hear that i am not the only one with this thinning hair problem. I read over all these stories and I can relate to most of them. Where to start, Well i am 26 now at the age of 16 I had a beautiful pre-mature baby. A year later I started thinning in the front where my bangs are, it would thin for a few months and go away and now 8yrs later its gotten worst. I have tried everything (nioxin) that did not work for me, I even tried the nioxin vitamins I poured them into my shampoo, it seemed that little hairs where growing put stopped a few months later because it was making my hair so dry. I have used Rogain and didnt like that it left my hair so oily it made it look even thinner. I use to have beautiful thick hair. I use to get so many compliments on it. But now I am so embarrassed to go out and be out in the sun. When people talk to me they always look at my hair it is so embarrassing. Why DO PEOPLE STARE?

I have gone to see dermatologist and they have told me that there is no cure for this. I doctor was such a jerk gave me picture of a bald man and said I would look like that by the time I was 30. That was very depressing. My hair dressers have embarrassed me in front of people and made it so obvious that my hair is thin. I know it is thin I look at it everyday in the mirror.

I got married 3yrs ago but have been with my husband for 8yrs and now we are trying to have a baby for about 4 yrs. I decided to switch to a ob/gyn she ordered blood work wanted my husband to have his sperm checked out and I just had my ultrasound done today, the nurse said my ultrasound looked good. But my blood work showed that I am not ovulating. So the doctor wants to meet this Friday to g over all the results. I am so scared for what she is going to say.

Johanna May 20, 2010 at 3:45 pm

Wow it seems as though we all have the same story. I am 27 and I have been diagnosed with PCOS for 2 years (symptoms for about 4 years). I noticed my hair thinning noticeably around my bangs and crown. So frustrating and down right depressing. I’ve tried nuhair, saw pametto, msm and everything else you can purchase at gnc. Coming to the conclusion that theres not much that can be done. Im in the process of trying to rule out other possible causes like parathyroid disease due to very low vitamin d levels. Hoping for something other then pcos.

Ruby June 1, 2010 at 8:43 am

Well Johanna ive been reading a lot and I heard that kelp vitamins help with hormones and thinning of hair and so many other things that PCOS causes. I am actually going to buy them today and I will keep you posted if I have good results.

Janet June 4, 2010 at 6:23 pm

Hi Ladies!! I have felt sooo alone with this hair loss until reading everyone’s stories. I have always had abnormal periods but never thought much of it cause it seemed normal… for me. I had my first child at age 20, at the time I was diagnosed with hypothyroid. O.K not a BIG deal, it’s only a little pill once a day for the rest of your life, I can handle that. Then I had my second child at age 26, my OB found multiple small cyst in both ovaries then I was put on birth control for the first time in my life. I have always had long thin hair but plenty of it until I was about 29, my mom kept telling me that my hair didn’t look healthy, she thought that my body had suffered a lot from my second pregnancy and nursing for the first year. I thought , I guess that might be true and figured it would get better eventually . Unfortunately now I am 32 and for the first time last summer It started bugging me. I asked my husband if he had noticed my hair thinning and to my surprise he said “yeah, I noticed it when the light hits you” WHAT!! where have I been !!That’s when it went down hill for me. I went to my endro doctor he said nothing is wrong with me, I got a second opinion and all my symptoms indicated I had PCOS. I am already taking birth control so they said that I was already taking what I needed, again WHAT!! I have read so much on PCOS its so much info, I was confused because it says it may cause male pattern baldness and I am having TOTAL hair thinning. I try my best not to let it get to me but sometimes one can’t stop the tears. I am taken 5000mg of biotin , a multi vitamin and also for the last year I use nioxin only the cleanser though, I noticed the scalp therapy(conditioner) made my hair fall out like crazy in the shower. I don’t think it makes your hair grow but it does leave your scalp very clean(no dandruff, I have very oily hair) also gives it a lift. If anyone has any good tips, would love to know.

Tina June 15, 2010 at 9:36 pm

Hello All,
I have been diagnosed with PCOS. It has been a battle for me as it has progressively gotten worse. I am 29 years old and was aware of my polycystic since I was about 23 years old. I had been on the birth control pill for about 5 years prior to finding out I had PCOS. The symptoms of PCOS only got worse after I went off the pill. I noticed an absence of menses initally. I thought nothing of it as I was 23 and excited that I wasn’t having to have a period. Wow, do I ever feel differently now. I wish I got my period.

I married in 2004 and soon after getting married started trying to have a baby. It took me 2 years of trying to get pregnant, but the great news is that I did. I had a beautiful baby girl in 2007. I had to go on Clomid to get pregnant, as at that time it was certain that I had PCOS. I had gone to see an endocrinologist who told me that there is great debate over PCOS, and that it is still a highly debated topic due to lack of knowledge on the syndrome. She put me on Metformin. My thoughts on whether or not you have to stay on Metformin if you start is that, no you don`t have to although, it is shown to have great benefits to help with PCOS symtoms. I went off of Metformin for alittle while as I was going to accupuncture to try for baby number two after being unsuccessful in getting pregnant the second time around. She put me on herbs and I didn`t want them to interfere in a bad way with the Metformin. I was up to 250mg of Clomid and still did not get pregnant as to which point I was referred to the Fertility Clinic in Calgary Alberta.
In the last couple of years since having my little girl, I have noticed excessive hair loss especially at the top of my head. I thought about extensions but they wouldn`t help for the bang area. I was getting really depressed about the hairloss, after not seeing my gynecologist for about 4 months, I went in to get a test done with her and she pointed out my hairloss. It set me into a flood of tears, I wanted her to have a miracle cure for me. She did tell me that she would refer me to a dermatologist after I was done having babies, and they could do something about it. My sister also has what she believes to be PCOS. Her doctor never actually confirmed it but she had/has all the symptoms and yet her gynecologist told her that the hair loss is not a result of PCOS. I call that a crock!
I have since gotten into to the fertility clinic and had my first appointment. In addition to talking about steps to take to hopefully become pregnant he too did suggest that I loose even 10 pounds. He said that because I was responsive to the Clomid the first time round with baby number 1, I should be able to respond again. He then added, what has mostlikely happened is that the extra 14 pounds I gained after having her has set me over, meaning shut down my ability to ovulate (flared up the PCOS symptoms). I have been put on the birthcontrol pill Cyclen to get a regular cycle. Then I will start injections. I expressed my overwhelming concern about my hair loss, and he said that if I go on the birth control pill it will help. Hmmmm…I really hope so. I never thought in a million years my mom would have more hair than I do.
I find you really need to push for your own health. I have been to so many doctors and tried so many different things, and still nobody seems to be able to fully understand and explain PCOS. I am with all you ladies in this struggle, I will have you all in my thoughts and prayers that we soon find some help in this hairloss/PCOS/infertility battle.

emily June 16, 2010 at 10:56 am

i have just discovered (about a week ago) that i have cysts on my right ovary and that i have PCOS, i am a diabetic type 1 and have been since i was 13, im now 19, i wasnt really controlling my bloodsugars until last february and id gone to the docter multiple times saying my hair was falling out but they always put it down to me being bad with my diabetes which made me feel like total crap. i know now that not controlling it definatly had an effect on my hair but not the cause of the hair loss. its got a bit better since getting my diabetes under control but it still falls out its especially visible at the front which i hate and when i go out with my friends im always thinking ‘are people looking at my hair?’ and spot lights have become enemy number one for me! i dont really know what to do to help my hair :( my blood test results showed i have slightly higher testosterone levels in my blood but only a minimal amount and iv heard that it effects hair loss. i take biotin supplements which have made my skin nice and smooth but my hair? no difference i can see anyway. i have been doing the low carb diet also to help bloodsugar and to take less insulin and it has helped to a certain extent but i wouldnt say my hair is anywhere near as strong and thick as it used to be. im so sick of not getting answers and getting upset after every shower and counting every hair that falls out :( reading your storys has made me feel less alone though, thankyou :)

Star July 5, 2010 at 6:34 am

Hi everyone,
I’m new to this site .
I can so relate to so many stories of all of you and sincerely my heart goes out to each and everyone.
I actually didnt know that I had pcos till last month. I’ve having hair loss since I was 16 , I’m almost 25 now. Just like Puja said , I’d tried homeopathy, minoxidil, vitamins, topical, etcetc since 8 years.
I had gotten my ultrasound ovary done 4 years ago it was normal, as it is now.
But when i went to an endocriologist he told me to get my test and DHT n DHEA 17 keto’s done. I have high testosterone. And low HDL and high normal cholesterol.
I’m 5’8″ and a half and around 58 kg, I used to play sports but have stopped since 4 years cause of college. I have a bf but he doesn’t know about my sever hairfall cos I use toppic particles on my hair. Its really bad ou can totally see my scalp.
I know the feeling, I missed all my graduate functions cos of the pictures and never go out with my friends to the beach or for a haircut. I hate looking at myself in the mirror . I can’t help but have stress, I’m a med student and have been taking on and off antidepressents since 5 years, I grew up only with my father ( my mom passed away when I was 9 ) and have severe anxiety.
Now recently I’ve been getting darkness n my neck and upper lip. I have an exam coming up in 45 days , and I have to get serious, but it’s just not coming to me . My endocrinologist subs metformin and spironolactone but I don’t wanna start anything new till my exam is over. I didn’t know it’d be so severe, I’m really really getting frustrated. Does anyone have atypical symtoms of pcos like me?
normal weight, no hirsutism, cycles 35 days, hairloss, mild acne, acanthosis?
Could anyone please let me know what they did or took? I guess I’ll have to start exercising after the test. I just don’t feel cheerful at all anymore.
Please let me know
Thank you…..

Meaghan July 11, 2010 at 9:46 pm

Thank you so much for writing this! I was diagnosed w/ PCOS 2 years ago and just recently I had to stop using BC (Which I use to treat it) Because my doctor called it into the wrong place! Towards the end of the month, the PCOS symptoms showed up horridly…I was taking a shower one night, started combing my hair, and tonssss and tonsssss of my hair was falling out! All the way to the root!!!! It got so bad that I went to the emergency room not knowing what it was from. They told me it was stress and sent me home. Then out of pure luck my mother came across an article saying it could be PCOS related. I am not back on BC so hopefully that symptom goes away but thank you so much for letting me know I am not alone!

Ami July 16, 2010 at 1:45 pm

Hey evryone

Im a girl and 22 i am thin and have never had problems with my periods or hair in the face, but my hair is thin in the top and it began when i was 16 i am so frustrated i have also done a lot of sport and still does it ,

I have began Metformin and i am on the pill i have been on metformin for 4 months and the pill for one year, i have begun to see a little difference but not much i used ti have really thick hair and i can understand all of u girls.. i have an app. with my specialist here on 3rd august,and then he will tell me what to do,, i can see some new hairs but not as it used to be maybe it takes more time then just 5 months

But it soooo frustrating to have this hair prob cuz i know that i am beautiful, and im thin but my “”only” problem is my hair:/ I feel so lonely cuz i dont know anyone else with my problems i hate when people stares at my scalp:(

I hope i can find something to help me, all my teenage years i felt so depressive because of my hair i fell so unnormal cuz i am a girl..

Vanessa July 21, 2010 at 3:36 pm

Hello ladies,

Never did i imagine there were soo many of us out there with the same problems. I was diagnosed with pcos in 2006, but I know I’ve had it way longer. Since I was in elementary I’ve had facial hair problem’s and it only grew worse as I got older. Since 16 I’ve done years of laser hair removal but it’s only a temp fix. Now it’s daily tweezing and waxing and i am 24. I started losing my hair a lot during high school and now it’s half of what I used to have. Pcos gives us the male balding effect, we start going bald first from the front. My only remedy as of right now is volumizer and a blow dryer. I did not get on the pill till 2007, again that was all the gyno could suggest, oh and shedding a few pounds. At one point I managed to lose 80lbs on diet and exercise. I cannot say my pcos symptoms improved much, but every body is different. I also managed to the gain the weight back and am now in the process of losing it again. Not being able to maintain my weight is still a struggle. I literally have to work out 6 days a week intense cardio just to maintain my weigh. I recently visited a endocrinologist, and have been on metformin for 3 months now. I did notice a slower pace in facial hair growth along with the hair on my legs. Still it keeps growing. The doc had asked if i’d like to start taking Spironolactone along with metformin to help the facial hair growth a little more, ( it is also paired with the pill for those of you still taking it) but suggested to wait since metformin can take a little longer to show it’s effects. I have to go back in September to see if my testosterone levels have improved. I will no longer be taking the pill for my pcos. I am currently willing to try Gnc’s Nourishair as a last result to my scalp balding. Being on efa’s for four months not only gave me good skin but also gave me a lot more hair growth everywhere!! Oh another thing i never had a problem with acne and since i been on the metformin i noticed minor break out’s so far, hopefully it doesn’t get worse. All the medications will react differently with every person, there maybe a few more meds out there to research and talk to your doctor about, but most definitely visit an endocrinologist asap!!

Nisha July 22, 2010 at 7:38 am

hi everybody
I just found this website today. I have been reading all the stories and I feel like I am reading my own story. I might not have found the right solution, but I have a couple of tips that can help. I have been diagnosed with PCOS in 2002. I have been to many many doctors for my weight, my hair and my skin issues. I and my Mom have researched a lot about my condition and these are all the things that I do which seem to help me.
First of all find a good endocrinologist who will diagnose that you have PCOS and give you Metaformin and Sprinolactone. Mine made me go thru many many tests before diagnosing me and putting me on these medicines. Please note that I did go to a gynecologist at the same time, who simply did not know what PCOS was and was hell bent on giving me clomid or birth control pills which simply would not have worked for me.My point is go to a doctor who know what he is talking about,most of then simply do not have a clue.
Details about my doctors:
http://www.uchospitals.edu/physicians/david-ehrmann.html
http://chicago.medicine.uic.edu/departments___programs/departments/obgyn/divisions/reproductive_endocrinology___infertility/humberto_scoccia__md/
http://chicago.medicine.uic.edu/departments___programs/departments/dermatology/faculty/james_s__feinberg__m_d___j_d___m_p_h_/

I have found these doctors of many years of research and I believe they are the best in the field. These are the supplements and medicines that I take. I cannot promise that these will work for you and will cure you but my problem seems to be a little better after taking these.
Metaformin-2000 mg a day
Spirinolactone – 100mg twice a day
B complex– twice a day
Good multivitamin
Ferros sulfate 325 mg three times a day with vitamin C
2 tbsp of brewers yeast with grapefruit juice
Egg protein (per box dosage)
sprouts
Vegetable juice (cucumber + tomatoe and Carrot + lime + spinach + apple)
lots of water
raw food as much as possible.
no sugar and no simple carbs as much a possible.

I used to have lots of sugar cravings before, but now my sugar craving seem to be under control. It took me a long time to figure out what/how/when to take all the above. I could not have done it without the help of my doctors and mainly my Mom, but now I think I am better. I still do see hair fall and a lot of it according to normal standards, but if I used to lose 100 hairs a day now I am down to 75, which in itself is a improvement, at least for me.
Please note that I am not a doctor but I am just trying to put in all the information that I found out during my battle with PCOS. Hope this helps.
Thanks
Nisha

Lucy September 4, 2010 at 10:03 pm

To Star,

Yes, I have PCOS and I am like you. Was a very fit and lean teenager. Have never been overweight and am still not. Had no hirsutism but suffered from terrible acne and hairloss and patches of dark skin under arms etc. It took years to diagnose my condition (even though I had a close friend who had been diagnosed earlier) due to the fact that I presented as lean (and also because being on the pill for other reasons partially masked the severity of my PCOS symptoms for a long time). I “passed” several fasting glucose tests until I was finally administered a glucose tolerance test which came back showing insulin resistance. My doctor was shocked! I have to undergo even more tests because she thinks while it could be PCOS (my gyn put PCOS together based upon medical history and an ultrasound) it might still be something else.

Am debating currently about going to the doctor for metformin (to reduce the insulin resistance) or just trying the super strict diet route. I don’t need to lose weight, but apparently carbohydrates cause insulin to spike, and the extra insulin encourages your body to produce testosterone — stop the insulin spike and the testosterone never gets made. Would consider spiro as well for the acne and to halt my hair loss, but think the doctor might not recommend it for me because of lack of hirsutism. At any rate, know that you are not alone. Do your research and consider what is best for you, but DO NOT GET DISCOURAGED. You are young, and there are many treatment options open to you. Just pick what seems right for you and try to stick with it.

Most of all, NEVER feel any shame about the decisions you make for your own health and never let folks treat you as if you have something to be ashamed of.
Good Luck

T September 5, 2010 at 12:53 pm

I first discovered this site a few years ago when i first researched PCOS but only feel compelled to leave a comment now after reading everyone’s stories.

I got my first period aged 11 and a half and my periods have been irregular since. My hair started falling out when i was 15, before that i had extremely healthy thick hair and my cousins and family used to joke that i was pantene model. At 16 i started getting acne, hair became dry and i was shedding like crazy. I went to the doctor with my mum but she said there was nothing wrong with me and unless the hair was falling in patches it was normal. I began drinking 8 glasses of water a day and began to eat healthier – my skin improved but my hair continued to fall.

by 18 my hairloss was becoming even more apparent. If i fluffed it up it would look ok – thin by this point but nothing unusual. It was only when it was wet or greasy that you could tell.

I finished my degree when i was 20 and at this time got acne again. I figured it was down to the stress of writing assignments but even after i graduated it wouldn’t go away. After a few weeks i went to the doctor who said it was stress. Someone i knew who was a doctor told me about his sister, how she had PCOS. The symptoms sounded so similar to mine so i researched it online.
I had hair loss, increased facial and body hair (yes, all those places we always think women should not have hair) and i was putting on weight. Not a ridiculous amount, but still putting on weight.

I went back to the doctor and told her i thought i had PCOS, she said there was not really anything i could do. I kept buggin her so she put me on the pill. For a year i had regular periods and i reveled in how nice it was to know exactly when you’d get one. but it did nothing for my hair at all.

At the age of 17 i was 42kg. I’m 5ft and this was considered normal, i wasn’t super skinny but i was slim, slightly rounder around the waist but still slim. but since my late teens i have been slowly gaining weight. I am now 22 and weigh around 60+kg. (the last time i checked was months ago, but i know i weigh more now). I went from a UK size 6 petite to a size 12/14 in 5 years. The doctor told me my weight is fine but if i put on anymore i will be classified overweight considering my height.

My hair loss continues. some days there is less than normal. other days it feels like half my scalp is coming up. i’ve had a fringe (bangs) since i was a child. I now cut my bangs halfway down my head but they are now extremely thin and you can see my scalp all the time. My hair is also dry and brittle, breaking all the time. I see people comb, tease, blowdry every day, dye their hair and use all sorts of chemicals and their hair is gorgeous to look at. I simply use the anti dandruff shampoo i was prescribed once or twice a week and massage with oil once a while and yet it still falls like crazy. I have about 1/4 of the hair i had a few years ago.

It saddens me to read everyone else’s story and see that they’ve had the same experience with doctors not diagnosing it or simply saying there is nothing they can do. I pray everyday that a cure will come up.

For now i don’t take any medication. I drink water in abundance and use paraben free natural skincare and thats helped with the skin. I continue to wax my chin every few days (and it continues to grow thicker everytime). I don’t want to take the pill anymore as all that happened when i took it was a stone weight gain. I also took iron tablets last year as i had a slight iron deficiency but i noticed no change apart from an upset stomach. I take seven seas hormonal balance tablets once a day – have noticed no change but its only been a few months. I will also try omega 3 tablets. Having read evryone’s stories i also want to try biotin and some of the other suggestions.

Hopefully something will stop the shedding. I wouldnt want to reach 23 and have even thinner hair than i already have. I’m single too – that’s another worry. Hair loss seems to affect so many aspects of our lives.
I hope something comes up for all of us. I know they say there is no cure, and doctors honestly don’t seem to care enough to look for one but i hope one does come up.

Yael September 14, 2010 at 10:50 pm

Dear all
I am 56, post menopause, still worrying about hair loss and trying to stop it. I was diagnosed with PCOS in London in my late 20’s, having all the usual symptoms since I was 16. Always fat, at times obese, always on a diet, hair on my face, irregular painful periods, never had children. And then in my early 30’s I started losing hair significantly.
I was told at the time of diagnosis to go home and lose weight, which as we all know is very difficult with PCOS. Nothing was said about insulin intolerance and no medication prescribed. Looking back on it I could kill that specialist but I think he is dead already.
So I did nothing, other than attempt diets and have electrolysis, which was bloody painful and drove me nuts.
In my mid 40’s I had an episode of very very very high blood pressure which manifested as a most explosive head ache. I eventually went to see a woman doctor, who upon listening to my history and my symptoms connected the dots and suspected that the cause of the blood pressure spike was none other than PCOS. She put me on metformin and the BP came back to normal quickly. I also lost significant weight without dieting. I work with food, life is complicated.
She sent me to a dermatologist at the Lister who has dealt with my facial hair arm hair and other inappropriate hair with laser very successfully. A word of warning if you have this problem – only specialist MD’s are allowed to use the really effective lasers, you can forget beauty salons.
I stupidly stopped taking the metformin for some unknown reason for some 6 years. I am now back on it with a vengeance and know I shall have to take it till I drop.
2 years ago I was so obese I decided to go on a VLCD called lighter life and dropped some 30 lbs.
I had a very bad episode of hair loss as a result but this has calmed down. Had I been asked at the time would I rather be fat or bald, I have to say I don’t know what the answer would have been. it was very very scary. My hair is very thin very fine and I still wish I could do something about it. I lose around 10 a day. I wish there was something I could do to bring back the volume of hair I had in my 20s, but I don’t think this is possible.
It is certainly not a priority for the medical profession, despite the fact that the health risks in later life from blood pressure and other problems are very significant.
Something in the newspapers this morning prompted me to look at this website and reading through many of the posts made me write a post for the very first time.
I am not defined by the amount of hair on my head, or a few stray hairs on my chin, which can be dealt with far more easily these days with laser. I have been very fat most of my life and even that never stopped me getting to where I wanted to go, and having the life I wanted to live. It is far easier these days to get treated in time but I agree that this problem on the whole is a low priority for doctors.
The other complicating factor is that symptoms are very individual and confusing. No one case is like another. If anyone knows what to do about the hair bit in later life please post. I shall keep reading.
Yael

neela October 23, 2010 at 2:46 am

hey stacey, and all the others.
i’m from chennai, and i’m 16. i have almost all the symptoms of PCOS, and i burst out crying when i saw this. i’ve lost SO MUCH of my hair, and its so embarrassing to face this at such a young age. i have hair thats just started growing, over my upper lips.. i feel very terrible. is there no cure for this? :(

Parie November 13, 2010 at 10:25 am

Hi everyone,
I was diagnosed with PCOS 2 yrs back.I am 20 now.I always had a good hair,clear complexion and I was a happy person.But ever since I tirnes 15,I have been having period probems,I had hair growin out of practically all my body parts.My hair is thinner,my hips are huge.I have high testosterone.I gained weight and I’m still 11kgs overweight.I tries allopathy,homeopathy,dieting,exercising,yoga and stuff.But no use.I’ve heard of Macafem.I’m planning to try it.Its so good to have a forum to discuss this problem.
My mom is scared that I’ll have fertility problems later in life.That is far away.But at present I’m just interested in losing weight and body hair.My greatest wish in life is to lie on a beach in a cute swimsuit.I hope doctors find a cure for PCOS soon.

fm November 14, 2010 at 4:36 pm

Hi Everyone,
Just wanted to share my experiences. I too have had an awful time with doctors, done every sort of diet you can think of, had ovarian drilling dianette, yasmin etc…

Now I have been looking at my body in a more natural light. I have stopped yasmin which made my skin come up in horrible acne (it wasn’t too bad before).
This is how I am coping:-

Stress seems to be a big factor with PCOS women, I try to do loads of yoga and mediation.
I take Gotu kola, it’s an ayuvedic medicine for vata body types. (also great for skin)
I only do high impact exercise thee times a week.
I have become very strict on getting lots of sleep.
I make SURE I eat three times a day, I have stopped all that strict low carb nonsense and just eat nice portion size, only have one treat a day (cake or chocolate what ever it is)
Drinking loads of water, eating lots of fruit and veg. DON’T starve yourself like I used to.
I eat cooked veg (stir fry) rather than raw. I treat my body as though it is delicate (even though I feel strong)
Because Vedic practice says our bodies are stressed out and we should be kind to them and I agree.
It is as though my body is confused and I am getting it back to normal. We should not be overweight and the hormone thing is due to early life trauma that has triggered something (can be abuse, neglect, death in the family) something from childhood. I am nurturing myself back.
I know is sounds a bit hippy but it is working. Instead of driving myself I am walking at a steady pace and I have gone down three dress sizes!
I also take vitamins, lots of zinc at a high dose (to recover from the yasmin), vit c, shatavari, triphala, b vit and biotin (someone mentioned this above and it works- also some of you might benefit from msn) I take selenium, magnesium, saw palmetto, calcium, vit d and flaxseed oil. OK its alot but I am looking and feeling great. Its taken two years but I dont feel like i have PCOS anymore, or at least that it does not rule my life. ( and I have been suffering over ten years- doctors were worst then)
I do laser for hair removal. Its expensive but worth it- make sure you go to a GOOD clinic, you should only need treatment every three months.
Also my fertility is a ok now (phew). Shatavari is also good for this.

And also Stacey sorry about your hairdresser, they sound evil. I am now using products which are all natural without parabens, naked from boots? They do serums and styling etc… I also add a few drops (3ml) of cosmetic grade argan into my shampoos, and conditioners.
And if you have sensitive skin like me (and curly hair so you can’t wax, bit of a nightmare) try snail cream for scarring (acne etc..)
Last but not least I am treating my skin on my body with gotu kola oil which I put in my body lotion and massage into area which scar (including stretch marks) You can make it up yourself.
I know alot of this seems cosmetic but it means alot as a woman you are judged on these things.
I hope this has helped people. Good luck! I wish you all well, don’t be down on yourself- haven’t you been through enough?

P.S. My friends have started asking me to model for them (designers) NEVER thought that would happen to me! So think what could happen to you- you’re all bright young things (younger than me any how!)xxxx

Kimmy November 16, 2010 at 10:04 pm

Hello all,
Oh my word, this is like reading my history. I am currently 19 and was diagnosed with PCOS in January. I had started getting symptoms through my massive amounts of hair loss and fast hair growth on the sides of my face and it was devastating. I had just started college and I had always had beautiful, thick hair and a perfect complexion my whole life and go to college and all heck broke lose. I was finally put on birth control, but it has stopped working as well I believe, my acne is worse, my hairs still falling out at alarming rates & I’m having to cut the hair on the sides of my face more often than I did when I first started it. It’s just so hard having to deal with this and the fact that I’m trying so hard to get some weight off the help my situation, but nothing is happening is very, very discouraging!!! Does anyone have any useful tips for anything new they may have come across?

Alisha December 15, 2010 at 2:46 pm

So here goes! I’m 31 yrs old and have 3 kids 13,9,3. I started to loss my hair 9 yrs ago when my daughter was born. I have been to amillion doctors and have had tons of tests done. I have just had my 5th thyroid test done and guess what it came back NORMAL. Isnt that horrible that you hope for the test to come back with some other result than normal. My mother has a thyroid disease so when I tell a doctor that they go right to the thyroid test. Having your hair fall out is truly crushing as a women. I go through all the same things everyone here talks about, hope that light isn’t showing my bald spot, do I have a hat that matches my outfit for the day, hopefully this headband looks good and covers my bald spots, I hope he isn’t turned off if he sees my scalp. It feels awful!!! I started taking a birth control (trinessa) about 1yr 1/2 ago and the hairloss seemed to stop but then my perscription ran out and I was off of it for 2 months and my hair started to fall out all over again. I finally went to the ob-gyn 2weeks ago and told her about my trials and tribulation and she suggested implanon. So I stated this today 12/15/2010 I hope this helps but I am a little scared because it stays in for 3 years. I am terrified that it will only make my hairloss worse. I wish I could find someone who is willing to help me find the answers that I need to help me live a normal full head of hair life again.

Jessica December 29, 2010 at 6:26 pm

I am usually the one to read and not to post anything but I feel I should also share my story as there are so many of us out there going through the same thing. I was diagnosed with pcos when I was 21, but looking back at things I figure it probably started since I was 15 because I began having irregular periods and losing my hair since that time. For as long as I could remember I was always complimented on my long thick head of hair. Now, almost 4 years later I probably have about half of what I used to. I was on birth control for almost three years and although it helped at first towards the beginning of this year I started to notice that my hair still kept falling out at alarming rates. It probably has to be one of the hardest things to go through as a woman, to think that you might lose all your hair one day. I know that it’s what’s inside that counts, but society has ingrained in us so much the importance of physical appearance that just considering the thought of losing hair shocks us. I decided to stop my birth control because it was just regulating my periods but everything else was still there…the acne, the hair loss. Stopping the birth control only made things worse because of what I have read, your body sheds all the hair that has been on the resting phase since you have been on all these hormones for so long. I read from so many places that in the long run birth control is not really beneficial and since I didn’t need it for anything but my period I decided to try having it the normal way. Because I stopped the birth control and still had pcos my hair loss was probably twice as bad as what it was before. I grew desperate and eventually landed here trying to find some solution. I went into deep bouts of depression thinking that I would have to live with this. Many times I cried, and many times I got over it. The one advice I can offer is to not obsess about it. The fact is that it’s true, the person you are inside will never change whether you are losing your hair or not. I tried to get over my depression by telling myself that hair does not define who I am, my morals and everything else that I believe in is what makes me…me. I also prayed about the whole situation, and although I am sure many us here have different beliefs, sometimes putting your faith in some higher being gives you a lot of the peace you need. I then decided to put things into my own hands and tried to not rely on doctors but on my own information. I discovered that hair loss is not only due to pcos but also thyroid and low ferritin. I went to all the doctors imaginable and asked them to give me the tests I needed. I had a holistic doctor, a general dr, and an endocrinologist diagnose me with more problems than just pcos. It turns out that I was also hypothyroid (usually the normal range for tsh is between 1-3, mine was 6), and my ferritin level was at 19 when normal is around 60. I urge everyone one of you to do research and find out if your hair loss might be due to something else but just pcos and rely entirely on birth control to cure the problems. I am currently on metformin to help regulate my periods, which has worked so far, I am also on thyroid medicine, I take a multi vitamin, a B complex, and biotin everyday. In order to increase my ferritin level I drink a grape, spinach, and orange juice and an iron supplement. I also take progesterone pills since it turns out that it was really low as well. I don’t know if my hair loss will decrease over time or if I will ever get the amount of hair I used to have back, but I know all of this has helped some. I am hoping that anyone who reads this takes some proactive steps over their health and looks closely as to what might be the cause of the problem, especially because sometimes doctors are not that big of a help. And always remember, hair is beautiful and we would all love to have lots of it, but at the end it does not define who we are as a person, because nothing can change that. I hope this helps someone because I know that when I was most depressed I was always looking for some hope.

joann December 31, 2010 at 5:27 am

hi girls. im sorry for all of your pain. i too have experienceed hair loss. i have pcos, a tyroid condition and nonclassic congenital adrenal hyperplasia. i was wondering if any of you have seen a endocrinologist that specializes in this area of pcos. mine mostly deals with diabetes and refuses to do anything but give me birth control pills. despite being a women herself, she seems to have little compassioin towards this issue and i was wondering if any of you knew a doctor who cared and was willing to attack this problem with his/her paitients. thank you in advance and i wish all of you the best.

Lynn January 12, 2011 at 5:20 am

Hi everyone.. I have been reading most of these comments.. I will say that I have PCO and most people don’t understand.. I have 3 children only by the grace of GOD and my Dr. I have noticed though my hair loss seems like it’s getting worse!! I do want to tell you about Toppik.. I love it.. it’s a spray and go to the web site http://www.toppik.com and you will love it. I’ve been using it for years and wouldn’t know what to do without it. My hair has becoming very dry and brittle but by being able to hide my baldness it’s a miracle product. I do suggest that you buy the sprayer that sprays the stuff on your hair. You can also get this Toppik from QVC as well. Hope this helps you all.. and lets all try to eat a healthy diet as well.

ERIKA January 27, 2011 at 4:10 pm

Wow… reading through this page really makes me feel as if i’m not alone. I was diagnosed with PCOS when I was 16 years old and I am now 22. I didn’t like the way Metformin and Spirolactone made me feel so i would take them intermittently or not at all. Last year, i gained excessive amounts of weight. Recently, though, i lost about 40 lbs due to excercise and diet. however, my hair continues to become thinner and thinner. this is the most transparent i have ever seen my hair in my life. it’s devastating and people don’t really understand until it’s their head they are looking at in the mirror. i hate how i have to apply dark powder on my head to cover up my scalp. i hate how i have handfuls of 30-50 hairs come out of my head every time i shower. i hate how i can’t even wear a pony tail without having some of my scalp show. i, just like every one of you, yearn and desire for long thick massive amounts of hair. it just doesnt seem to be in the cards for me. i used to wear clip-in hair extensions but now i can’t even do that because they’re too heavy and i fear it will do more damage. i don’t know what to do anymore. i excersise 3-4 times a week and i eat healthy, i take b-complex, vitamin D3, iron, multivitamins, probiotic, biotin, metformin and spirolactone as well as yasmin. i try to get as much protein as i can because i know that helps for hair. i went to a hair restoration specialist but he just gave me prescription strength minoxadil and told me to wait 6 months to see results. 6 months! i’m the type of person who gives up easily. i apply it sporadically because i feel so hopeless, like if nothing else helps, why would this stuff work? i don’t know what else to do. i cry every time i take a shower because i feel the strands sliding down my legs into the drain. it’s extremely traumatizing and my self confidence is hurting. on the upside, i have a loving and supportive family and boyfriend who help anyway they can. Still, no matter what, when i look in the mirror i see my scalp. i want something that can produce miracle results, but i know that there probably isn’t. has anyone tried anything and had amazing results? any advice would help. Thanks for hearing me out!
Erika

Bee January 28, 2011 at 12:08 am

Dear Stacey, i totally feel ur pain.. im surprised at how similar my story is to yours and thats exactly how I feel too. Im around the same age as you, I too sometimes feel like I should let my bf go, and just not ever get married because Im embarressed of how Ive become.. hair loss, acne, weight gain.. insomnia.. I just don’t feel like Im the same person… None of the treatments have helped me so far honestly, I’ve tried everything..frm BCPs to metamorphin to even homeopathic meds. I recently lost 40 pounds and guess what, nothing.. no change in my condition what so ever. Im going to give myself 6 more months and work out and watch my diet to see if it helps at all, if not.. im gonna give up on everything… I can’t deal with this problem. Why can’t there be a genuine cure of PCOS.. we are still so young. This is really breaking my heart and this feeling is impossible to share with others because obviously no one would ever understand the reason why.. Most people are ignorant, they think oh she prolly doesn’t tke care of herself and so she has acne/hair loss and also the weight gain.. It hurts so much when I hear such things because only I know how hard I work, how hard we all work to deal with PCOS. Is there anyone here who actually recovered from the symptoms? Please share your experience, guide me thru the process.. At this point im going insane.. I too want to lead a normal life, going to school has become so hard.. I can’t just walk out the door in 20 mins like most ppl my age would, i wake up 2-3 hours before my class just to cover up all the acne, fix my scalp and get some confidence back.. i hate lookin at myself in the mirror or taking pictures now.. and believe me i was never ever like this. I used to take 1000’s of pics of me, loved going out, loved being around people and now its the total opposite. I feel so depressed sometimes and the worst part is that, people thing thats just how i am as a person because once again they’re not aware of my pain.. i cant share it with everyone, its too embarressing. I don’t know what to do.. will i ever get back to being my normal self again. Would these horrible PCOS symptoms ever subside? I have a gynaecologist appointment again next week.. been a few yrs and no meds have really helped me so far. I feel like crying so much and givin up already…

Angel January 28, 2011 at 11:15 pm

Ladies i have dealt with the same problems for many years, no endocrinologist helped, no dermatologist helped, NO1 HELPED. What i discovered recently, ladies with pcos have extra DHT in their body, which is a bi-product of Testosterone, the DHT blocks the blood flow to the top of the scalp and the forehead, causing a male-pattern baldness. Now a way to help reverse this hairloss is using a Laser hair brush that stimulates the follicles and nourishes the hair follicles. This cause more blood flow to the hair follicles, reversing the hair loss, or keeping more hair from falling out. These laser hair brushes run from $76-$500 dollars. These brushes are what are used at hair restoration clinics. I hope this information helps you ladies. Because i know the emotional pain that every1 is going through! :(

brittany February 2, 2011 at 11:37 pm

Hello ladies,I have read over some of the stories related to this article and I have seen a vast amount on info- I’m happy to find that there are so many women taking the issue into their own hands and doing research and going to doctors.Through research we will find a cure.
I dont care to get into my entire hairloss story here-
to keep it short it started 2 years ago,i started with very thick hair.
the cause of mine is still unkown because i havent seena doctor or dermatologist due to the cost-
but I have been self medicating and doing what i can. I feel that I probably have PCOS – I have hair coming in on my chin ,thinning all over my head and infertility.To treat the symptoms of PCOS IE HAIRLOSS I have been using supplements which include a DHT blocker.Before i was taking the DHT blocker i was trying to use a multivitamin,biotin ,flax and fish oil to solve the problem.I later heard that fish oil and flax can make you produce more androgens and testosterone so i quit taking those.I found shin men DHT blocker after scouring many reviews. I have been taking it for about 4 months now ,which is the recomended time before you see regrowth.
I noticed within the forst 10 days of using it that my shedding had decreased a lot. I was a hair counter! I went from losing about 20-50 in the shower to only about 4-5 hairs and then later on only 1-3. I’m not good about taking pills so id miss one every so often ,if i miss it more than a few doses i notice increased shedding.Anyway – Id be bald by now if it wasn’t doing something.Ive now invested in shen min faithfully in hopes that it keeps working.Im also researching stronger DHT blockers .In addition to the dht blocker i take 2-4 capsules of elements for hair and every so often take a saw palmeto extract pill which im thinking of increasing to daily use.Taking a whole food energizer multivatim and mineral is good too. I have some promising regrowth in the frontal hairline,some thick hair hairs growing where normally are baby fine velus hairs.

Danielle M. February 13, 2011 at 11:29 am

Hello,

I haven’t read all these posts yet because I’m headed out the door. I will come back to finish though. I just want to say that women with PCOS can often get pregnant. However, you may need to go on metformin to regulations insulin resistance/blood sugar and clomid to force ovulation. There are other options too. Each person is different. I have PCOS. I am 37 and now about to TTC for the first time with above method. I had terrible, painful periods for several years until a recent surgery from a knowledgeable Gyno. I had lap surgery for PCOS cysts, fibroids and D&C for thick endometrium. I also have endometriosis which can only be diagnosed when they exam you lap surgery.

Also, you can get off metformin if you lose weight and are able to keep you blood sugar down. How does one do this? By reducing carbohydrates. How much does one reduce? That depends on the person- it varies. Get a glucose meter and start eating like your a diabetic because insulin resistance is really an early stage of diabetes. Most PCOS symptoms are due to Insulin resistance.

Cherry March 5, 2011 at 4:49 am

All your stories have surprised me. You don’t see young women around with hair loss. I’ve been losing my hair since I was 11 years old, and I guess that’s where my story differs from yours, and where I am lucky.
Since I never understood the pleasures of eating, my mom always told me that this problem was my fault, because I’m not eating right. I grew up believing that I caused my hair loss.
When I was around 20 the doctor sent me to an endocrinologist, who discovered my PCOS and gave me pills as treatment. I still take them now to help with my period, but they did not help with hair loss.
I am now 25, and my thinning hair is really showing, which also causes it to be very dry (advice to those who have this problem – use hair oils, not products that have oil in them, but the actual oil). But my hairdresser who was really understanding (it seems he has dealt with this problem before) cut my hair in a style that is nice and somewhat hides the thinning factor (though by now it doesn’t help as much as before).
The reason I said I was lucky this happened to me when I was 11, is that I’ve had enough time to get used to it. This hasn’t come to me in a bang. Of course I had my moments of depression, especially in high school, and of course I am sometimes ashamed when looking in the mirror, but when I don’t look in the mirror I don’t really think about it. I am a happy person today and I enjoy life. The people around you don’t look at your hair as much as you think they do. This hasn’t stopped me from having a boyfriend or even being the belle of the ball at some university parties. If you don’t care about it during social situations, no one else will.
Now, of course I still try to find ways to stop this hair loss and I’ve never given up hope, but I don’t let this affect my every day life since there is nothing I can do about it.
My advice to you is, do what you can to stop your hair loss. But until you find the cure, enjoy life as much as you can because if you don’t show that you care about having thin hair, if you act like it’s a perfectly normal thing (which it is), no one else will care either.

Good luck to all of you.

Maz March 6, 2011 at 7:01 am

Hi All,
I have had PCOS since I was 15. I started my periods then and then had like one a year until I was 18. My doctor sent me for tests and put me on Dianette which is fantastic for PCOS symptoms. I am 38 now and was taken off Dianette this year as you are really not allowed to stay on it for as long as I have. The side effects are depression, low sex drive, bad migraines and weight gain. I did suffer from all of these but managed to keep the side effects under control most of the time with exercise. Also the knowledge that it was keeping hair loss and acne completely under control. I am still on BC, my doctor is trying me on a different one. I am not thinking of having children. I use some vitamins called Sea Kelp which seems pretty good. I have to wear my hair up every day and hate my boyfriend seeing me with wet hair. You know what though…….I honestly dont think they care, notice, or think we are any less attractive, or love us any less so please try not to push them away. Look at all the men who stick by their wives through Chemo etc…
Keep your chins up. Take vitamins, eat healthily, ignore ignorant stares and silly laughing hairdressers…. and exercise. It will keep the PCOS symptoms at bay. I have had this thing for 23 years and im not bald, 50 stone and covered in acne yet :O) we shall beat this thing!

Adrianne March 13, 2011 at 11:12 am

Hi everyone. I feel for you guys. Im going through some similar things. I was diagnosed with PCOS in late 2008 and was prescribed metformine. My period got back on track almost immediately but the metformine was giving me horrible stomach cramps and other gastrointestinal problems so i stopped taking it. Since my period never changed i didnt worry that i wasnt taking the pills. I even lied to my gineco about it. Around august of 2010 my hair started falling. At first it was just seeing more hair on my pillows when i woke up. Little stuff. My gineco prescribed a multivitamin. Never took it. Then it slowly got worse. My hair was thinning out and falling at a faster rate. Around november i started working at a place where i wore a really tight hat (something i dont think helped the whole situation). Since jan it has gotten worse. I was still not taking my metformin or my multivitamins. My hair was thinning more, my hair getting tangled more. On late february 2011, after around 10 months of not taking metformin, i got back to taking my old dosage and im taking my daily multivitamin. Its been around 20 days since i returned to the pills and I still havent seen any difference besides a lot of short hairs growing specially around the front. Also, i havent had a period since january. The hair loss is worse at the crown, im starting to see scalp and it freaks me out. I cry a lot because i am scared and i feel impotent. My biggest fear is showering because i have to comb my hair and so much hair comes out. I hate to go out because i fear somebody migh say something about my hair or stare. This is horrible. I am so scared and sad. I have an appointment with an endocrinologyst tomorrow. I pray that he will know what to do and can give me some hope. Im glad im not the only one though.

Angela March 20, 2011 at 7:32 am

Same story here. Mine started in 2005 and has been getting progressively worse. Went to the Doc (thankfully, I have a good one who listens and is knowledgable) and he diagnosed me with PCOS after some blood tests and description of all that comes with it….fatigue, anger over stupid stuff, acne, facial hair, hair loss, cramps….blah, blah blah. Started on small doses of Metformin right away with gradual increases and I did feel a difference as the mg increased. I take a maintenance dose of 1000mg 2x a day. However, the hair loss is still going strong and reaching an unbearable point. I’ve been researching like a crazy person and have decided to try a natural herbal remedy before I go all the way to hormone treatments. I don’t lack estrogen; I have too much testosterone. The consensus seems to be that hormone replacement “teaches” your body to stop doing the right thing for itself so you become completely dependent on the supplement. I’m going to try Macafem for a few weeks. It’s supposed to stimulate your whole endocrine system and makes your body produce the proper levels of both estrogen and testosterone. There are no known side effects and it’s a natural root/plant. I hope it works cause I’m at the end of this rope, FOR REAL!!! I’ll post back in a few weeks. Ordering today….keep your fingers crossed!!

Charlotte March 22, 2011 at 2:19 am

Hi, i have PCOS, and i have lost a tremendous amount of hair, but now i’ve been doing better, and i was wondering, if it’s possible for the hair to grow back even in the places where the hair has completely balded.

Or, will the hair that is still growing, just grow stronger?

i want my hair back :(

and i’d like someone to tell me if i still have hope :(

Angela March 23, 2011 at 5:07 pm

Charlotte,
I’ve read up on this and new hair growth is possible but don’t look for it in days or weeks. It can take 6 months or longer for new growth to even begin (according to much of my research). However, a lot depends on the definite reason your hair loss occurred in the first place. Best thing to do is talk to your doctor about it, eat right (fresh fruits and veggies; stay away from processed foods) and take care of yourself!! Don’t ever lose hope!! Tomorrow is a new day, with new discoveries in medicine and treatments!! You’re not alone.

Kash May 7, 2011 at 5:38 pm

Hey all,

I was 15 when I was diagnosed with PCOS and Diabetes type 2…Since then i have been on various medications to get my sugars under control and it helped me for 2 years but after that nothing seems to be working.
I have the same symptoms of hair falling out and being overweight. I have tried everything i could to lose the weight, but the max i lose is 2-4 kgs and its really un-motivating. I have no idea what to do next. My doctor’s are also of no help. All they keep on doing is lecturing me on what to do next, but not understanding that I am doing everything that is capable of me!
Thanks

Sandy May 10, 2011 at 2:00 pm

http://www.huffingtonpost.com/2011/02/17/scientists-may-have-found_n_824551.html

Possible cures coming our way??? Any thoughts on this?

Angela May 14, 2011 at 4:12 pm

On Macafem……BLUF (Bottom Line Up Front): Macafem definitely made a difference. I tried it for a month and did see some definite results in the amount of hair loss. It dropped dramatically when my dose went up to 4 per day. That seemed to be the right number for me. I started at 2 per day for a week, then 3 and then 4. I only purchased 1 bottle and so I ran out fairly shortly. In the interim of my next order, I couldn’t take it (obviously) and my hair loss gradually increased again. Important to note, however, that at the same time my Macafem ran out, I injured my knee during a workout and have been “sidelined” for 3 weeks so the lack of exercise has, no doubt, effected my stress level (working out for me is a great stress reliever) and my sugar level balance (although I’ve been extra careful about what I eat since I know I cannot exercise). I think that the return of my hair loss was quickened by the absence of exercise but I don’t think it would have been as bad if I still had Macafem on hand. I’ve started back on the dose and will give it a week or two and let you all know…….hope everyone finds what works for them!!!!!

Jessie May 24, 2011 at 1:42 am

Thank you all for posting your stories.
Although I have never been diagnosed with PCOS, I believe I will be making an appointment with my doctor soon.
Here’s my story:
Everyone in my family is overweight. My mother has extreme hair loss. She is 50 and barely has any hair left. She also has diabetes. My sister is hypoglycemic, and has a blood clotting disorder. My mother had uterine cancer, and my grandmother had breast cancer. My grandmother is also balding. No one in my family has ever been diagnosed with PCOS.
I have had issues with my weight my entire life. No matter what I try to do, I can never seem to lose weight. I think the first time I realized I was overweight was in the third grade, which is also when I started to develop acne. It was a horrible and traumatizing experience, considering I was an overweight third grader with acne (and my parents thought it would be a great idea to throw braces into the mix). I was teased relentlessly by the other students. I also have extremely oily skin and hair, and awful dandruff. My sisters use to tease me and say that it looked like I had potato chips crumbled in my hair.
When I was in the 7th grade, I started menstruating for the first time. Shortly afterward, I realized that my hair was falling out any time I touched it, brushed it, or showered. It wasn’t noticeable to anyone but me, but it was still extremely stressful to me at the time.
In my freshman year of high school, I was diagnosed with high cholesterol and high triglyceride levels. I also started to get horrible cramps any time I had my period, to the point that I passed out in class because the pain was so unbearable. I went to an OBGYN and they put me on a birth control pill Errin, which is a high progesterone pill, because blood clots run in my family and increases in estrogen can cause them. The pill did absolutely nothing for me. It did not help with the cysts that were causing the cramping, stop my period, or stop the hair loss. Soon after, I started noticing dark black hair growth on my chin. My friends teased me ruthlessly because of my excess body hair (my sister still makes fun of me because she has blonde hair and never has to shave and my hair is dark black and grows so fast that I have to shave daily.)
After high school, I moved a few hours away and went to college. In my first year of college I started having extreme panic attacks, to the point that I would sit in my car and cry instead of go to class. I also noticed that I was having extreme mood swings and depression. By this time, I had (basically) a full beard, acne, was over 100lbs overweight, bald spots, oily hair and skin, anxiety and depression issues, and high cholesterol.) I dropped out of college and moved back home with my parents.
After moving back home, I got extremely ill. My doctor did extensive tests on me, but she was only looking for hypothyroidism. She is a terrible doctor, I don’t trust her, and I have issues talking to her about my problems, but due to my health insurance she’s the only option I have. She runs so many tests and makes me come for physicals every three months, yet she never finds anything wrong. I’m halfway convinced she does it just so she can charge my health insurance.
Anyway, two years ago, I got married, and after two miscarriages, I got pregnant. This was in September, I went to my doctor and she sent me to an OBGYN, who wouldn’t do any tests until November, even though I was a high risk pregnancy with the two miscarriages and the fact that I’m obese. I found out when I went in to have the ultrasound that I had miscarried again. The doctor said it was normal and didn’t do any tests or anything like that on me.
Now, after reading all of your stories, I sit here and wonder how I could have dealt with these issues my entire life and never had a single doctor diagnose what is wrong with me. Just by reading the symptoms I can tell that it’s the problem, yet I’ve never even been tested.
I am honestly terrified that things have gone on with me so long that there won’t be anything that can be done to decrease my risks for other health problems caused by PCOS.

Sorry that was such a long post, it’s just that reading all of your posts made me think of everything that ever bothered me about myself, because I see so much of it happening with all of you.
Thank you so much for giving me hope that things can get better, and for giving me an outlet for all of these issues that have been building up inside of me.
-Jessie

Angela May 25, 2011 at 4:19 pm

Jessie,
I’m sorry that you have been dealing with all of this without any support channel and that hurtful people around you have made it worse. I’m not a doctor so I wouldn’t dream of attempting to diagnose but I can tell you that 3 miscarriages in 2 years not only deserves further investigation but it’s damn near malpractice NOT to find out what the cause is. I will resist the emotionally charged urge to go off on a rant about insurance companies and doctors………I hope you will find a doctor who cares about you as a whole person as well as all the test results and diagnosis that bombard them each day with each patient. There are great doctors out there who can really make a change in a patient’s life just by showing a genuine interest in their overall well-being; just knowing someone is in your corner, helping you figure it all out, can take the pressure and stress down a few notches.
Jessie, I pray you’ll find a doctor who can provide that for you AND work toward a diagnosis instead of treating you like a case study!
Don’t give up hope! The answers (even if only partial) are out there! Remember……your doctor WORKS FOR YOU……not the other way around!!!! Praying for you, Lady!
Angela

jasmine May 31, 2011 at 3:27 pm

hello ladies.. im 18 years of age and recently found out i have PCOS.. i am noticing VERY large amounts of hair loss, i feel so ashamed and my fiancee trys to make me happy & says he loves me no matter how much hair i have but i cant feel like a women knowing im losing hair:( has anybody used any products that have worked for hair loss?

Debra June 6, 2011 at 4:54 pm

My doctor gave me Aldactone because I had a lot of hair on face and arms, etc. to help clear this up. He neglected to tell me that it would thin the hair on my head. My hair would fill the sink. I had to quit using it!!

Chisophine June 9, 2011 at 8:23 am

I am only 24 yrs old, weight 94 pounds, and I was diagnosed of PCOS. My hair has been fallen very badly and especially the left and the right sides… it looks 40% bald now… This really stress me out and I am afraid to hang out with my friends and I tried to stay home all the times cuz I am afraid people will look at my bald head. My doctor asked me to take birth control pills so that I can have a normal menstrual cycle but then does anyone know if birth control pills could stop hair from falling?

Lovely July 8, 2011 at 8:04 pm

Hi Guys,
I read most of the story’s posted and thought I would share mine

I was diagnosed with PCOS at 18, after going to my moms gyno for a few due to irregular periods, she did blood test after blood to find out what was going on since i never had a problem before ( i started getting my pd at 12yrs old) and then all of a sudden i started getting my pd every other month and then eventually i would go 3-4 mths without getting it. I finally changed gyno’s and thats when i found out what was really going on and was put on birth control to help regulate my pd. I’ve always had very thick hair no matter what i put my hair through ( coloring repeatedly,straightening,etc) i never had excessive hair loss til i was 19 thats when most of my issues started. I was an average kid not fat or skinny maybe a little tall for my age but i gained a few pounds in my teens but lost it by 19 and then over the period of a few months i started gaining weight even though i watched what i ate and went to the gym 3-4 times a wk no matter how hard i worked out or restricted what i ate i couldnt seem to lose a lb and my hair was falling out so badly that if i even ran my fingers threw it i would lose 10-15 hair. At first the hair lose wasnt a big issue because i had so much hair it didnt bother me. I was told by my gyno to just continue with exercise and diet because due to pcos it would just take longer for me to see a differnce. Fast fwd a 2 yrs i lost 30lbs ( TOOK 2 YRS) after working out like crazy and constantly wathcing what i ate ( which honestly sucks sometimes)

Lovely July 8, 2011 at 8:05 pm

but I couldnt seem to lose any more weight not a single pound and my hair was still falling out , I went back to my dr and was prescribed Spironolactone to help stop the hair loss and facial hair growth as well as metformin to help speed up my metabolism , but after taking boths meds for over a year I didn’t see any difference and I still had an irregular pd. I stopped taking all the meds cept birth control for about a year because I was just so fed up with not getting any results I hadnt given but just needed a break I guess I went back to my dr when I was about 23 and started the same meds again and same things as before had no results instead in the period of 9 mths I gained 30 lbs and had 1/4 of my hair left . There were days that I would just sit my room and just cry and think why is this all happening to me no matter what I do nothing helps . I tried everything I could to lose weight , numerous types of weight loss pills, meal replacement shakes, weight watchers, etc but there was no results. For my hair loss I even tried oil from indian that “suppose” to stop hair loss, shampoos that stop breakage, stopped using any styling tools or sprays but nothing helped . Every time I went to the dr I was told the same thing “eat right, exercise and take the meds) and I was getting so frustrated because I was doing all these things but not seeing any results and as each day went by I was becoming more and more depressed because no one understood what I was going through. Last I would say was the worst since I was diagnosed because I didn’t get my pd for 10 mths even I was on birth control, I gained more weight , and my hair loss became even worse , I was even given meds to induce my period which didn’t work, I felt like I had just reached my breaking point I couldn’t take it anymore I even thought about suicide or just cry for hours because I was depressed I didn’t know what else to do but cry out the frustration. I would compare myself to my cousins or just random girls on the street and be like why do I have to be the one with all the issues why can’t I just be normal. I even had hair envy (lol)when I was the one who was always told how beautiful and thick my hair was.
When I asked my dr about what I should do about my pd issues ,I was told that it would help if I lost some weight, I wanted to scream “hello what do you think I been trying to do for years …lose weight ” I hate how easy it is for even drs to say that when they know one of the symptoms of pcos is unexplained weight gain. At this point there was basically nothing they could do except run more tests to see if they could figure out what was wrong with me , I had uterus ultrasound done , tested for diabetes, hypothyroidism, etc everything came back normal. At the beginning of this year I went to see my reg dr due to a cold and I started discussing my weight and pd issues with her , she decided to put me on phentermine for weight loss and to go on a fruit diet for one wk. I took phentermine for 3 mths in which I lost 25 lbs and actually started getting my period without being on birth control. Ive been of phentermine for 2 mths now since I was only suppose to take it for 3 mths and I havent lost anymore weight and no pds so far. Im planning going to an endo again regarding my hair loss hopefully theres something that can be done. Throughout all of my changes both physical and mental in past 7 yrs my boyfriends been very supportative which honestly helps a lot because there are days you just want to vent without being judged. He’s been the one whose seen me at my lowest points even though there are times he doesn’t understand how much having pcos has affected me mentally.
People who don’t have pcos can’t even begin to understand what we go through, especially the ones that are closest to you. Having pcos has made my self esteem drop a great amount because it changes your physical appearance so drastically.you really do feel like you’re not a woman anymore because some of the things that define you as a woman are slowly fading. There are a lot things that I have had to go through that I didn’t mention in this post because its too much to write in one post , long story short weight gain , pd issues , hair loss and growth will give your ego a huge beating that will take years if not longer for you to recover from.

Lisa August 2, 2011 at 8:03 am

Hey everybody, I just was looking online about hair loss and pcos I am 23 years old and I was diagnosed with PCOS when I was 13. I have just recently had bald spots showing and have a doctors appt next week, so I will see how that goes.After reading everyones post from like 2007 I am so amazed how there is still so little Doctors know about this but one thing that I have been facing a lot with lately is the fact that my tumors are now turning into cancerous cells and my OB says that I may have overian cancer and we are running test now.. I want to if any one else has this same prob as do and hows that been working? because it seems to that everyone has periods once an a while but for me I have no periods at all.

Oralia August 12, 2011 at 10:18 pm

hey. i read everyone’s storties..and they really are very sad. and i am giong thru it all too. but, im only 14. i have like severe facial hair…like really severe. and i have it everywhere. and i’m also losing lots of hair. and the thing is…i really could have been pretty without pcos, no one in my family really gets what i’m going through. they all look like super models..and it’s really depressing to be around them a lot. i don’t really get what pcos. i’m just taking the meds the endo gave me…i take spironolactone and a birthcontrol pill…i don’t really care about the side effects. i just want to get fixed. but i just hope everyone gets well….and i hope someday these doctors find a cure. because this is cruel and not fair. i won’t be able to enjoy my teen years fully. i’ll always be self concious. but good luck to you guys! :D

Eryn August 15, 2011 at 12:08 am

Hello,
I ran across this article/blog when researching Nioxin and if I can use it if I have hypertension.
Anyways, I too have very very thin hair, and its thinning by the day. I also have PCOS. I used to have long thick blonde hair. I look at pictures and start to get teary eyed. Because with how my hair is now, I don’t feel pretty. People don’t understand. People always say you shouldn’t worry so much about it, your hair looks great! I get hair extensions done, there is no way I would go without them. I also dye my hair a dark color because it helps it look fuller on top, when I was blonde you could see my scalp it was so transparent. One thing that has SAVED me, altho I hate having to do it and just wish I was like all the other girls… Is this hair powder from “Bumble and Bumble”. Its a spray that you use to cover the bald spots and or thinning parts of your hair.

But its not the same, because I would give anything to have my old hair back. =( I know I shouldn’t think about it so much, but its easier said than done. I just wish it was MY OWN HAIR! Being able to get out of the shower and just let it air dry or put it up in a pony, with having extensions I have to sleep with a durag on my head, being able to have the wind blow and not IMMEDIATELY put my hand up to make sure no one can see my extensions.

I used to have 2 huge patches of baldness, it was awful. I could touch my scalp, and I started balling. Since doing my extensions a different way, it has grown back! however, the top is thinning as we speak. Its embarrassing.

Eryn August 15, 2011 at 12:10 am

I have heard to take black currant and primrose supplements, it is supposed to block the testosterone which causes part of the “male pattern baldness” and the “male pattern hair growth”…. Has anyone heard if this is true??

K August 17, 2011 at 7:38 am

Eryn, how do you get your extensions applied? I use micro link, How is your applied? Always wondering if there is a better method. Thanks! I just read your story and absolutely feel the same pains and desire you do. I so crave to have my hair back. The feeling of getting out of the shower brushing it straight while I’m blow drying it not even thinking about how many hairs are coming out then straightening and parting it wherever I wanted to without even thinking about it because I have so much hair. I miss it; similar to mourning the loss of a limb. When all this began I didn’t even know women could lose their hair, absolutely had no idea that this world existed. But boy do I now.

Eryn August 22, 2011 at 12:09 pm

K,
I use the ‘bond’ type of extensions, with the u-tip hair. It works really well! However, it tends to get really tangley at times, do you ever have that problem? What do you use for shampoo/conditioner and other hair products? Do you get a full head of extensions ? I can’t get them on the sides or by my forehead cuz my hair is too brittle there and you can see my scalp. I hate it with a passion. Yes the spray hair powder works, but it gets on stuff which is really embarrassing.
Id love to just put my hair in a pony after a shower, have the wind blow on my hair, wash my hair ‘like normal girls’, or go in the pool without any worries.

Eryn August 22, 2011 at 12:12 pm

Oralia,
Does the spironolactone work for you?

K August 23, 2011 at 5:49 am

Hi Eryn: I use the micro link where it has the I tip on it and they clamp with with a micro link and yes it definitely gets tangled after a month of being in. No I didn’t get a full set. I had what she put in taken out over 2 months and went awhile with just 20 in. I’m going to have her reinstall 20 the next time. I’m letting my hair rest right now. My head is very sensitive so all I use is baby shampoo and I condition the ends of my hair. I can’t use any products because I react to all of them itching and burning and get a headache as well. You said you don’t get them on your forehead; how do they do it on your forehead? I can’t imagine. How do you brush your hair?

Eryn August 23, 2011 at 3:37 pm

K,
My hair is so brittle and breaks off on the top of my head in the front, that the extensions cant be put up there. I haven’t used baby shampoo yet. Do you use it on your real hair? or the extensions?
I was reading up on the hair product, Wen, and I think I might give it a try.

When brushing my hair, I use this kind of brush. It doesnt pull out as much hair as a regular brush…
http://imageshack.us/photo/my-images/199/boarbristlebrush1.jpg/
This is what I get done, a little lower, like to about my ears. My stylist wants to have my hair rest as well, however, I do not think it turned out good this time =( (not me in the pic)
http://imageshack.us/photo/my-images/88/hairextensionsafterbond.jpg/

These are like the hair clips I make.
http://imageshack.us/photo/my-images/843/main04g.jpg/

K August 25, 2011 at 6:05 pm

Eryn

Thank u so much for responding. Yes I used baby shampoo on my extensions too. Nothing can touch my scalp without setting it on fire. Baby shampoo is so bad for ur hair but it is the only thing that doesn’t set me on fire I’ve tried every gentle shampoo there is but nothing works. I had mine removed and it feels so good to have a break from them. But I miss the look of them.

Eryn August 27, 2011 at 1:31 pm

K, Yeah when I take them out it feels sooooo nice to wash my hair normally, and then I think to myself, hmmmm maybe I will leave them out, but I haven’t been able to do so. I need to have the hair. I am too self conscious without it. I too have a sensitive scalp, but Joico and Purology seem to work ok for me.
I just hate how the hair gets tangley, and has that “fake hair” look eventually. This time with the extensions, I know she is letting my hair grow, but it just doesnt look the same, my hair and the extensions dont blend, and that makes me even more self conscious.
have you done a clip in extension before?

Suraya August 28, 2011 at 11:58 pm

hi everyone.. i found this website while googling pcos hair loss.
i too, suffered from a horrible hair loss. its been 9 years..and i am bald on top :(.
its so frightening. i tried rogaine, but sadly nothing worked.
i just scan through above comments and posts.. and i saw some of you ladies are hesitating getting married because do not want to be seen as… balding.
im just thinking… maybe you all could use a wig?
all the best cysters. God bless.

K August 30, 2011 at 4:55 am

Eryn, No I haven’t tried the clip in but might look at that. I wish you the best. I think I saw your pics on the network. The extensions do look good.

Ann August 31, 2011 at 9:14 am

Ladies:

I am so glad you brought up clip in extensions! My hair dresser recommended them and I was looking at Ken Paves “hair you wear” clip ins. They are pretty affordable and offerany different options. Has anyone tried these?

I have heard though that the clip-ins may make your hair loss worse as they add extra pulling at the roots. That makes sense. Maybe just for special occassions versus every day use? Thoughts?

Ann

Dawn September 6, 2011 at 4:01 pm

Hi, I’m new here myself. I have had PCOS for 14 years… ugh I can’t believe it’s been that long. I have tried everything for my thinning hair. I did have the laser to get rid of facial hair which worked amazing.

The one thing that brings up my confidence with my hair is I use Joan Rivers great hair day. It’s a powder that never leaves your hair even when you sweat. I have been using it for over 1.5 years. If you do use it get a color lighter then you are. I’m a burnett but have to use the blonde for it to look good on me. I have a lot of friends that love it, a couple that don’t. Worth a try? There is also Derm Match. I didn’t love it but others do.

I didn’t read this whole blog because it’s so long but wanted to let everyone know about this.

My big question is, has anyone had hair growth after losing the weight? I have struggled my whole like to lose the weight. My husband is a Dr and he keeps telling me if I lose the weight my symptoms will go away and I could get off the metformin… I wish it was that easy just to lose weight. Being a recovering binge eater that is easier said then done. But I saw my Mom lose 125 pounds and completely change her health (different issues)
I was just curious, you see the Biggest Loser and other people get off all the meds. Just curious if hair grows back…

Danielle September 15, 2011 at 9:33 am

Hi guys, so the last time I posted on this site was back in 09 (about half way up the page) all I have to report is that my hirsutism has got worse and I have lost even more hair. At this point if I had the amount of hair I had back in 09 I would rejoice.

I am extremely bitter because I have been to the doctors many times but I feel like they fob me off and don’t take my issues or how it makes me feel seriously (and perhaps I am not that assertive) all they ever do is suggest the contraceptive pill and I’m not happy with this I had a bad experience with Dianette and I don’t want to rely on a contraceptive to mask my symptoms.

I pretty much grow a beard, plus some chest hairs (as well as other less noticeable places). The back and front of my head feels so thin. I feel so depressed and sad about this all the time and then I feel stupid because I go what right do I have to feel so bad about hair. There are people suffering from much worse things in life that would find thinning hair and a beard laughable but it doesn’t change anything.

As for my weight, I was never over-weight to begin with at 5ft 10 and roughly (it varys a little) 70kg I have a perfectly ok BMI but at this point I am very tempted to go on serious exercise regime and drop to my absolute minimum weight to see if that would make any difference?

I want to try spiro….actually I want to try everything. I am very sad that basically no-one has confirmed any hair regrowth of course I don’t want to loose any more but even the tiniest amount of regrowth would be a blessing.

I am determined for my doctor to take the insulin resistance part of the PCOS seriously. I have brought a home blood sugar test kit out or curiosity to see how the foods I eat effect my blood sugar and its all over the place. I may not be diabetic but I swear at this rate in later life I would have serious issues. If I eat something like pizza my blood sugar shoots up to 19 and takes a while to come back down its also prone to dropping really low and I know this isn’t normal. The strips for monitoring blood sugar are expensive though and you only get them free in the UK if you are diabetic but I think people with insulin resistance which are trying to help their diet and reduce their insulin resistance should get some help to.

The only thing that I’ve done in the last year is take Yasmin but it gave me really bad migraines.

I promise that I will report back in a few months to let you guys know if anything I have done has helped.

Some days I feel like shaving all my hair off and getting stick on hair. I’m sure it would look great but imagine explain that to a boyfriend….yeah I don’t actually have any hair…I’d have to hide it until we are married.. hehe.

My heart just goes out to all of you that are suffering as well. I wish there was something that I could do!

Best of luck everyone xxx

Mrs Babs September 28, 2011 at 9:14 pm

@ Danielle God has such a sense of humor. I would read your post today. Today is my 4 months wedding anniversary. I am sitting here with my hubby and don’t have on my wig-which I now wear out daily- and you can see clear through to my scalp. When he and I first met I was nervous about it. But I have always shown every man I have dated my hair-if we were seriously dating. Do you love me or my hair? In marriage you have to love a person for who they are not what they look like. Looks fade. Hair thins/ falls out. My sister talked me into it really. She is often right and was this time too. My hub didn’t want to marry me until I could allow myself to be comfortable with him seeing my hair. He wanted to know that I knew he really loved me. So even though I still have my moments there is no wig in the house. I can’t take jokes about it and no one other than extremely close friends and family may see me without the wig. My husband is my husband. There good men in the world and they don’t care about hair, weight or disAbility. They care about what matters. So in summation I am overweight- really working on it, almost bald, dx with endo-severe, and PCOS. All through that I dated and now I am married. Honey if you don’t date that would be your loss. Don’t let not having hair stop you from living. My hub and I have talked about hair replacement/systems. I wear weave/wigs but we want a more perm solution. I just thought you might want to know that all though it feels like it hair isn’t everything.

Emily October 6, 2011 at 10:02 pm

I was diagnosed with PCOS 4 years ago. I had been to several doctors and dermatologists because I hadn’t had a period in over a year and I had acne and was losing lots of my hair. I finally went to a naturopath and he diagnosed me that day. The tests came back with huge hormonal imbalances and an ultrasound showed my enlarged ovaries. He put me on lots of supplements: EGCG (the stuff in green tea that lowers testosterone), Amla Complex, cromium picolinate, oregon grape tincture and several others. I also received acupuncture to regulate my hormones. After four months, my periods were completely regular. My skin cleared up and my hair stopped falling out. The hair that was lost has not totally filled back in but I think I’m going to go back and see if there is anything I can take to help. I’m totally against treating PCOS with birth control. I think it makes a person dependent on synthetic hormones when our bodies are so capable of healing themselves when we support them naturally. I encourage everyone to seek out a naturopathic doctor to help treat PCOS.

Kelly October 13, 2011 at 8:03 am

Hi…I don’t know anything about PCOS but i guess that’s why i’m here…I am 19 and my whole life i knew there were things wrong with me but i just thought i was disgusting. I have had discoloration on my skin, especially my neck since I can remember. My parents would bribe me with toys if I could clean off the “dirt” but I would scrub my skin raw and it looked the same. I have always been overweight and my hair has thinned over my whole life and everyone knows i have thin hair, i get made fun of for it. I have bad acne and skin tags everywhere. Finally i worked up the courage to go to the dermatologist yesterday to fix all these problems and went into shock when she mentioned PCOS. I never expected anything to do with my ovaries…i just thought I had a weird period because I’m fat. Now I am about to go get bloodwork done to verify if I have it or not so I went on the internet to do some research.
I’m so scared. I don’t want to have PCOS. I thought that if I went to the doctor they would finally give me a pill or cream and POOF my skin would heal. But now there’s talk of diabetes, infertility, and all sorts of nightmares I couldn’t even imagine. I don’t know what to think and looking around the web I see there is not cure. How does this disease effect your lifestyles?? do you think your life would be completely different if you didn’t have it??

Miranda October 13, 2011 at 9:50 pm

To all of my PCOS girls,

I want to start out by saying that, PCOS is something you will battle with your whole life. I know because I have from a very early age. Although, science has gotten better since I was first diagnosed, there are still no sure answers. I will break down my situation just to save everyone time and money.

My periods were a bother so I talked to my gyno. I had the bad cramps and irregularity. She sent me to an endocrinologist at the age of 16. Mind you at this time I had beautiful hair, the curls and volume women pay hundreds of dollars for. I went to see him, he seemed like a quack but I humored him. He told me the risk for diabetes, explained the excess hair growth (why i had to wax my entire man face from the time I started middle school) and the infertility. He put me on birth control told me to lose weight or I would become diabetic and I left his office. I didnt focus too much on anything til I turned 18. I started to get the shakes very badly. At this time I was 5’4 and pushing 180lbs. (I didnt feel like I ate or exercised any differently than other girls my age of course) I immediately had to go on a diet when I realized how high my blood sugar was. At this time I am 19, controlled the weight even though I am still over wight at the time but no longer shakey. My beautiful hair is falling out at astonishing rates. I am starting to notice on my crown. I talk to the gyno and she puts me on a low dose of spirolactone. For those of you on it, they dont know much about it but make sure you drink a lot of water because its a diaretic and we do not know the long term affects of it. While on this med I go from countless products, nioxin, hair skin and nail vitamins, rogain (for men – its a higher grade recommended for extreme hair loss in women), and countless other products on the web or in salons selling me on their amazing products. After months on products, I would switch with hope in my heart, but all prevail to be the same, worthless. This goes on until I am 22 and I give up, I couldn’t afford it anymore. At 23 its so drastic I cry a lot, my boyfriend and others ask where my hair is. I dont know. I get a lot of hair follicles too, they look like little salt grains and itch my scalp, I scratch and off they come – no hair attached of course. Thats another wonderful thing of PCOS the hair follicle will stay even when the strand is gone. So I tried a dermatologist who just told me I have alopecia and to use rogaine. (BEEN THERE!) I went back looking for new endocrinologists in the area (ST. LOUIS) looking for someone who might have pity and give me some experimental drug or SOMETHING that would be a miracle. Everyone is booked. I end up booking another appointment with a doctor, it turned out he was the same one I had before. He wants to check my insulin again, because diabetes is all he is worried about. I told him I would rather be a fat chick that has to watch what she eats the rest of her life THAN ever be bald! He just upped my dose of spirolactone that I was originally on. I take the highest dose I am allowed. My gyno and him talked and put me on extra estrogen to try to beat out the androgen. I take 4 pills a day now on top of birth control and hair supplements to try to fix it.

Where do I stand now? I am 24, no sign of hair regrowth or preventing it from falling out, but I am still on a pill cocktail. I go in fits where I have to starve myself to drop weight fast enough when I start to feel shaky again to make it go away. I still grow the same big thick hairs in my face, chest and abdomen. And all I have gained is stress and lost thousands of dollars on treatments, appointments and extensions which cant help.

As a nursing school has taught me, hormones regulate everything in the body. In severe cases of PCOS, hypothyrodism (underactive thyroid) is normally a borderline body system accompanying the PCOS. I feel like doctors could try the approach of treating the hypothyroidism and see the effect that has. Hypothyroids tend to keep on body weight (problem 1) make someone sleepy (problem 2) have hair loss (problem 3) and other hormone controls in the body.

My question for anyone out there that can answer is this, does anyone have PCOS that has received medication for an under active thyroid? Please tell me if you have, and how it has benefited or caused you any problems. I would be very interested to see a correlation.

Good luck to everyone, I know we are struggling, but I hope one day there will be a cure.

madeline October 25, 2011 at 11:16 am

wow i just read the origional story (didnt have time to read all the replies). i sympathize with Stacy because i did go through something very simular. i doubt my case was as bad, but it was noticeable enough for me that it did effect my perception of myself. i was obsessed with my hairloss (my hair is dark so it is very noticable) i felt like whenever i was talking to someone they’d jsut be looking at my hair. some people have commented on it, that i have a bald spot. i was using Nioxin for a long time but it stopped working for me after 5 yrs or so. plus, my hair is very very dry and brittle… i needed something much more moisturising. i started using the Hairmax laser comb, and luckily for me, it worked. i dont think it works for everyone because a lot of people think its a scam. it definately wasn’t for me.. after a few weeks of increased shedding i definately saw some new hair growth, and a year later, my bald sp0t had gotten a lot smaller. (my bald spot is where i part my hair). it’s not completely gone, but i feel a lot better about it.

unfortuantely for me my hairmas laser comb broke yesterday.. i bought it used (gross i know) off ebay, because itw as much cheaper, but it didnt come with a travel case, and i didn’t take care to protect it when i put it in my suitcase while travelling. so i need to buy a new one.

i sure hope all ladies find something that works for you. i know how devestating hair loss can be, especialy if you are a woman.. how detrimental it can be to your self esteem, and how it effects your own confidence, as well as how you interact with others.

Jayla October 25, 2011 at 3:09 pm

Hello,
I am going through the same trials and tribulations that you all are going through. Hair growth is my main concern right now. I was just diagnosed with PCOS today and it was honestly not a shock at all. I have been losing hair since I was very young. I have been having extreme thinning for the past 4 years or so and it is horrible. I can honestly say that I relate in every way to the hair loss and excess hair growth. I have been in deep depressions, cried myself to sleep, and been embarrassed to go out due to excessive hair loss in the crown area. I use to have thick hair and once I realized all of these things were happening it was quite frightening. I will start treatment and hopefully something will work. I will also update everyone if I find out valuable info. Hang in there.

Carriex October 30, 2011 at 9:16 am

hey guys seen this page by chance. i am 20 and was diagnosed with pcos last november. i have dark hair on my chest, sides of my face and chin. i only have 1 period a year if im lucky and when i do get one it lasts up to 3-6 weeks so then i have to get tablets to stop the bleeding. my hair is also thinning.
5 months ago i went back to my doctor to find out what i can do to help myself. i decided to go on contraceptive pill dianette but it just didnt agree with me. so i went on yasminelle and i have to say i do feel the difference and my body feels more normal.

i then went into my fruit and nut shop and bought primrose evening oil which has giving me more energy. as for my facial hair i bought the no! no1 and girls it does work!!!! my beard is nearly non existent.

as a hairdresser there is hope for thining hair. il get a few and type up the names for ye all .

Jayla November 1, 2011 at 1:03 pm

Thanks Carriex

Oenone December 1, 2011 at 12:10 pm

I’ve been reading all these stories and it makes me feel so sad for what PCOS does to us. I have been battling it since I was about 16 when I noticed the first thick black hair on my breast. Now at almost 33, I think I’ve probably done more research on the bloody condition to fill a whole medical encyclopaedia. What astounds me, having gone through so many years of unwanted hair growth, hair loss, irregular periods and other symptoms, is how ignorant most doctors are. I mean, yes – there is a limited amount of information out there because studies are expensive and only contraceptive drug companies could probably afford to finance them… but it’s just inconceivable that more doctors aren’t getting furiously curious to try to find a cure themselves, considering they probably see a good handful of cases every week!

Well, I’d like to share my experience and I hope it may help someone. I was never diagnosed properly with pcos because when I went to the doctor it was early days and all she said was the literature suggested I would benefit from losing weight. Well, she didn’t tell me how. So I went away and happily cut out fats while eating large amounts of bread, honey, sugary coffee and other stimulants every day and expecting to lose weight from my many gym visits. When I didn’t, I began researching myself. I found, WITHOUT EXCEPTION, that every single time a sufferer of pcos cut out refined carbs from their diet, with or without exercise, their condition improved. The ones who were disciplined to stick to a sugar-free diet were CURED in 6-18 months, often from type 2 diabetes as well. Just by cutting out sugar, refined wheat flour & rice, and most bread and pasta. So I started taking steps to change my diet but it wasn’t easy. Over the years I’ve switched bread types to lower GI ones, started munching on pumpkin seeds instead of popcorn, etc. My hair, which had thinned dramatically between the ages of 19-21, began to grow back again. But I didn’t stay on the wagon for long thanks to sugar cravings and difficulties controlling stress and depression. I began bingeing every day on chocolate and refined carbs like cookies and popcorn and crackers. For one whole year I practically lived on Nutella sandwiches and ice-cream. My periods were all over the place. But I stopped gaining weight suddenly. Instead, the fat seemed to be accumulating in my arteries. I could feel it. Whenever I exerted myself I felt like having a heart attack. This feeling would go away whenever I cut out all refined carbs and I would start to lose weight rapidly.

Now here is the interesting thing. I live in a fluoridated area. Except for 3 times, when I moved interstate and lived overseas for half a year. Both those times I lived in areas of non-fluoridated water supply. AND I noticed BIG changes in my body. My periods would normalise, my body would start putting on fat around my hips and thighs again if I exceeded my calorie limit, I felt more feminine, my hair would grow thick and healthy and my leg hair would grow about 4 times slower! It was as if fluoride was messing with my hormones. It had to be fluoride because my diet and habits stayed the same. Well, 5 or 6 months ago I was back in my good old fluoridated home town and eating crap like there was no tomorrow. I began to experience severe anaemia, fatigue, mood swings, depression to the point of suicidal thoughts and of course hair loss. I decided to head overseas for a holiday to get healthy. I went again to a non-fluoridated area and within 2 months my periods seemed to be separating out again. (Instead of one long case of lightly bleeding every single day, some days I had no blood, the next month, even more days of no blood… had I stayed on for a year, I suspect I would have had proper periods). Also, I put fat on my women areas as before, but my hair was still shedding due to my anaemia. I came back home and went on a strict diet, no sugar at all apart from half a teaspoon of honey in my cocoa. I began losing weight rapidly but my hair accelerated its falling even on iron tablets and with regular exercise! This has me stumped. . .

So while reading through all these posts and considering my situation, I am putting two and two together: What are the facts? Well, moving to a non-fluoridated area seems to be affecting my fat cells, making them able to store more fat, and that in the ‘healthy’ female areas of tummy, hips, thighs and buttocks, as opposed to waist and upper torso. We already know that fat cells work with insulin receptors, as do liver and muscle cells. When the liver and muscle cells are saturated in glucose, any remaining glucose in the blood gets sent to the fat cells in the body, which take it up and store it as fat. BUT… what if those cells have become insulin-resistant?

Oenone December 1, 2011 at 1:06 pm

(Part 2) In that case, those cells will not be able to take up the glucose and it will be converted into blood fat and go wandering around the blood vessels, increasing the risk of heart attacks and strokes. The only way to get rid of it then is to exercise it away, which may take anywhere from a day to several weeks, depending on how much blood fat has accumulated. Studies have shown that it accumulates around the middle. Which is why people with larger waist circumferences are more at risk of diabetes. The 2 go hand-in-hand. They are both indicative of an underlying problem, insulin-resistance.

Now, you’re probably wondering what fluoride has to do with this. In several studies published in Europe, it was found that synthetic fluoride (of the kind added to our water) is damaging to cell membranes in mammals. It has a perforating effect. Cells rely on receptors on their membranes to transport nutrients like glucose inside the cell. One of these receptors is the insulin receptor. The fluoride interferes with the function of the insulin receptor on the cell membrane, causing the cell to essentially reject the insulin-bound glucose that is waiting to be transported inside the cell. Since the cells are not getting the nutrients they need, two effects are created: Firstly, the pancreas thinks not enough insulin has been released to take up the sugar in the bloodstream and begins pumping out more. Secondly, the cells begin to starve. They may still be getting glucose, but not in the amounts necessary to maintain the person’s metabolism. This is dangerous for the brain and heart, which need an uninterrupted supply of glucose to keep functioning. So the brain sends a message to the thyroid gland, the master switch of the metabolism, to slow the person’s metabolism down. (This often happens on the crash diets following binge periods). Immediately, the output of thyroid hormone is down-regulated, the metabolism slows down and the person experiences slowed heartbeat, slowed thinking, a cooler body temperature and a feeling of relaxing or wanting to rest. It’s the body’s way of coping with the shortage of energy getting into the cells and it’s completely normal and healthy. In fact, it can be harmful to the body to play with this delicate system by ingesting thyroid hormone; that’s why no good doctor will prescribe it, if a person’s levels are within the (wide) normal range. Most doctors understand that the environmental factors which can make someone be ‘at the lower end’ of normal are usually temporary. Stress, travel, pregnancy, new job or other factors can all increase or decrease thyroid function but it’s not an indication that something is wrong, of itself. The real problem lies in the way the cells handle the glucose from the food you eat. Theoretically, a person should be able to store fat indefinitely if their calories keep exceeding their expenditure. But that’s not what we witness. Some people do keep getting fatter, some stay thin. Many morbidly obese people are cleared by their doctors to go on shows like The Biggest Loser and do strenuous exercise like running on treadmills. While others, being only slightly overweight, are not able to even walk up a flight of stairs without feeling like having a heart attack. Genes do play a role in this. And insofar as there is a predisposition to having one’s insulin receptors damaged, there is a predisposition to developing pcos. Just so long as we understand that IT NEED NOT HAPPEN.

No, if we want to find the real culprit behind this disease, we need to look at the root of the problem. It all comes back to what we put in our mouths. In our modern society we tend to think more foods are natural than actually are. For example, do you know exactly what ingredients are in a slice of bread? Or a slice of ham? Or in a glass of the water you drink? Each of these provisions is not the same as it was even a few short decades ago. Even the packaging it all comes in is different. Everything is pretty much altered since our forefathers were alive. Chemicals, additives, pulling the fibre out of things, blasting things with different gases… added on top of the effect of most of us hardly getting any sunlight in our average working day (yes, the sun does wonders for skin, hair and nails, for more reasons than just vitamin D!), have all ensured that the health reality we are experiencing today is different to that experienced by our grandparents. It’s logical that the greatest changes will produce the greatest effects. The predominance of pcos is definitely a great effect. So it must have an equally great cause.

Finally, I do believe every ailment that has a cause also has a definite cure. We now have enough research to understand the vital role that vitamins and minerals play in our health. Studies have shown how important iron, vitamin C, magnesium, zinc and vitamin B are to metabolism, along with others. But it’s the interplay between all these vitamins and minerals that is important. For example, without vitamin C, you cannot utilise iron. Studies have also found that refined sugar interferes with the uptake of nutrients like magnesium and iron. Yes, too much sugar can make you anaemic.

But what is too much? Is it 2 blocks of chocolate a day? Is it a small dessert after dinner every day? What’s too much for one person may not be for another. I think the best guide to answer that question is to look to ourselves. Specifically, to our ancestors. We each have different ancestors, who lived under different conditions. Some, like the Maori tribes of New Zealand, had very little carbohydrate to live on. Others, like the British, had more. Some others, like the Mediterranean peoples, were used to more salt from the sea. Whoever your ancestors were, it makes sense that after thousands of years of adaptation to a certain way of life, their genes – which have been passed to you – are equipped to handle that particular way of life. Somehow, something tells me MOST of us didn’t have ancestors that could get takeaway pizza or eat peanut butter or hazelnut spread with the spoon too often.

Oenone December 1, 2011 at 1:24 pm

(Part 3) Sorry I harped on and didn’t actually get to the point of my post. I wanted to say that there is hope in this whole thyroid/pcos/hair loss thing. Along with cutting out refined carbs (and not mixing meats, which also raises insulin levels), exercise is paramount. Why? Because when you exercise, your body produces adrenalin. Adrenalin works opposite to insulin. Where insulin locks away the sugar in your cells, adrenalin realeases it. It’s what they give type 1 diabetics when they fall into comas from sugar lows. The body is extremely efficient at controlling how much glucose is released through the action of adrenalin (also called epinephrine), which is why exercise has such a beneficial effect on blood sugar levels. Simply put, you can’t overdose on sugar that adrenalin releases into your blood the way you can from the sugar you eat. There is a sound logical reason for this: Humans have ALWAYS needed the ability to release glucose quickly into the blood through the action of adrenalin, because survival against environmental dangers depended on it. But humans have NEVER had the quantities of refined cane and corn sugar that we currently have in our diets. The sweetest things available to society’s humans a few hundred years ago were ripe fruits and the occasional discovery of honey (and often, the sweetest honey is found in the highest trees or made by the most exuberant bees, both of which add to calorie expenditure if you want to have any). It definitely wasn’t an everyday thing so the body did not adapt itself to abundance. (For a better run-down on this topic, read the book Sweet Poison. The research in that book will have you running from the candy aisle quicker than from a swarm of angry bees).

Courtney December 21, 2011 at 11:02 pm

Hi stacy, I’m only writing this because I really have no one who understands and I want you to know you are not alone. When I was 15 I gave birth to a beautiful baby girl. I struggled and pushed myself very hard to be a good mother and since I was on my own I was all she had. I met a man a bit older than me and we married when I was 19. I got a really good job and was taking care of my new family. When I turned 20 my husband and I decided to have a child. It didn’t happen naturally so I went to the doctors and was told I have PCOS. I then lost my job. My hair is rapidly falling out, I’ve began to grow facial hair, I used to weigh about 140 and very fast hit 220 and can’t seem to loose a pound and am unable to even have a child. I lost my health insurance so many doctors want nothing to do with me. I’ve even accumulated a lot of debt trying to pay out of pocket for little to no help. I’m so embarrassed by my appearance I’m too scared to go on job interviews. I don’t like going out with friends or any public. I used to be so alive even with all the struggles I was outgoing, fun, many many friends and I enjoyed life. Now some days I just wanna curl into a ball and hide from the world. I’m scared because I bleed all the time. And am waiting for my husband to get sick of looking at me and sick of the lack in sex life because my body barely allows it. I don’t know what to do and I’m loosing hope. My daughter is the only reason I pull myself out of bed everyday and some days I can’t even do that much. I’m even too embarrassed to help at her school. I wish I could stop being so sad all the time I love her so much but the overwhelming feeling like I’m becoming a man and less of a woman is killing me inside. I’ve seen some doctors but am unable to pursue medical help without insurance. I’m 21 years old and if my hair keeps falling out at this rate I will for sure be bald by 30. I just want my life back. I have no one to talk to that I don’t get embarrassed or even understands. I know no one ever got anywhere by pity for themselves but I just wish I knew why. I’m sorry to be such a downer I just have this all weighing me down and have no where else to say it. I just lost myself somewhere inside this body and would do anything to get her back. -Courtney

G3 December 23, 2011 at 8:58 pm

I happened to be researching Viviscal and that is how i landed up in this page and i am so glad i did. I have been strugging for the past few years with Hair loss , weight gain, facial hair and all that unpleasant stuff PCOS does to one. Apart from all that, the saddest part is that i have been trying to get pregnant for more than 3 years with no result and we finally are resorting to IVF now. I am desperately hoping IVF works – Pray for me please.

Back to my symptoms – The Salons help with the facial hair and I literally drive myself to exhaustion with working out / running to manage my weight gain but the one problem i dont have a solution for is the hair loss. It has caused me sleepless nights and miserable days. Have any of you tried Viviscal for hair loss ? Has it worked for women with PCOS ? I would greatly appreciate any help / info.

Thanks so much and hope someday there will be better info and meds for PCOS . Take care you all.

Shannon January 23, 2012 at 5:39 am

Hi there..I am so thankful I found this site. I am 45 yrs old. I started having children at age 30 and had my last at 37. With each child’s birth I noticed quite a bit of hair loss..and although that extreme amount seemed to subside, my hair has never been the same. As time has gone on, my hair loss seems more and more profound. I have very thin hair on top..you can really notice my scalp. It’s so frustrating to deal with, as I am sure you all know. Here is a little health background, not sure what is related, but I am shooting it out there just in case. I have suffered from periodic patches of exema on my face and arms, throughout my life. I am overweight and diagnosed prediabetic. I am Vit B12 deficient and recieve monthly shots for this, as well as take a daily sublingual 2500 mcg B12 supplement. The doctor has me having vaginal ultrasounds every 4 mos to monitor an ovarian cyst. In the last two years I left a long term, emotionally and mentally abusive relationship..huge amount of stress there, but my life has drastically improved and my stress levels are only high around exam time :) So..each morning I take Vit D 2 0r 3 1000 IU’s, the B12 supp, a 100 mg B 6 ( for carpal tunnel ) and an Airborne immune support tablet . I will add to t hat a zinc 25 mg. I am a bit confused by the timing of all the supplements in Joans post. If you read this Joan, could you post just a brief outline of when you take what, on a daily basis? Any other thoughts or suggestions is appreciated. I am currently trying to get my diet under control, cut back on sugars and add in daily exercise. Thanks, Shannon

Jordan January 30, 2012 at 4:25 pm

Hi I’m seventeen and my children’s doctor is throwing around the idea I have PCOS due to the facts that it is in my gene pool, I’m heavily over weight and I have never had a regular period. I am scheduled to see a endo soon and I have multiple issues I would like to bring up with her like my hair. My hair has never been thick but it’s not super thin either and I would like to keep it that way. I was happy to see im not the only one out there who is dealing with a genetic bombshell that seems to embe never ending. I was really surprised though about the talk of a lack of endos in some places, I personally live five miles from nowhere and I go to one endo doctor while my cousin goes to another who I for younger teens, and thats within a thirty minute radius. If I were willing to take the five minute drive over the border to the next state or drive and hour and a half to Pittsburgh my options would be almost in the double digits. I really just wanted to say thanks to all those who posted for giving me hope that I can live a somewhat normal life.

Tranell February 11, 2012 at 6:47 am

Rejoicing! It feels good not to be alone. I was on the pill for 10 years, then got my tubes tied in my 30’s. That’s when my problems started. I kept my hair braided, so of course that’s what everyone blamed on the hair loss. I gained weight quick and also started snoring. About 2 years went by, of course I visited doctors and just was told to lose weight. My sleeping became worse and I developed all the other PCOS symptoms. I plugged those into the computer and voila! I took the information to my daughter and he requested an ultrasound. I started on Metformin, didn’t like how it made me feel. Switched to Avandia, but it made my feet swell and ended up on Actos. That worked well, cysts were shrinking, but I wasn’t losing any weight. I was also diagnosed with sleep apnea. Moved to Germany, there was a ban on Actos for diabetes. The doctor couldn’t understand why I was taking Actos for PCOS, insisted that I was diabetic. Wouldn’t give me a prescription, referred me to a Gyno. She gave me an ultrasound, prescribed me Metformin and sent me on my way. I was all gung-ho thinking I’ll start losing weight. I also started taking estrogen supplements for 3 months. Needless to say, the German Gyno became tired of seeing me, told me she wanted to see me in 6 months. After 2 months of taking estrogen, I’ve become allergic to something. I stopped. I now am having problems breathing and have all the symptoms that lead to heart disease (thanks to Dr. Oz). I was going to see an Internist, but think I will see an Endrocrinologist (thanks ladies!). Here’s the kicker. I just had my Gyno appointment and the cysts have increased!!!!! I lost inches, my belly seems fatter, my hair is growing, but still thinned/receded in the front. I don’t feel sexy most days and my sex drive has changed. I hate that doctors don’t have a clue! We are not alone! Keep sharing your stories! Thank you.

Chrissy February 26, 2012 at 3:33 pm

Hello,
I am 35 years old, married with 4 kids. I have been suffering with hairloss for 10 years. My doctors have said it may be pcos, and when i had my 3 rd baby via csection, they found an ovarian cyst. I was told that pure spearmint tea does wonders for pcos symptoms. So, I drink that, and also take vitamins. My hair is thinning very and and imam finding it hard to hide the thinning now. I avoid bright lights like many of you, and have to wash my hair everyday now because if i don’t, the thinning is much more noticeable. i wish i knew what was causing this. My hair is coming out by the root. I’m thinking about buying a topper. i have no idea how those work, but I’m tired of worrying if the person standing behind me in line at the store is looking at my hair or can see the thinning and my scalp showing through. I was on the computer amd my 5 year old son came behind me and said “mommy, you look bald in your hair!” Gotta love the honesty. My husand is very understanding and always tells me he doesn’t notice it when I ask. I kmow he must since it is very obvious, especially on top and near my sparse bangs area. I wish there was a miracle cure, but I’ve searched and searched with no luck. I do highyly reccomed toppik hair fibers. They work well, just don’t breathe in the fibers because I’ve read it can cause pneumonia. Anyway, I feel your pain. I’m trying to stay positive. Some days are easier than others, that’s for sure!

Natalie Jones March 6, 2012 at 3:52 pm

I have PCOS and I understand. I’m a so-called thin PCOS person so doctors can’t tell me whats the cause and what are the symptoms: insulin, lack of female hormones, too many male hormones, my thyroid, my ovaries? I don’t have diabetes or pre diabetes, I do have acne, low thyroid, dark coarse facial hair, and an irregular period. My doctor won’t even admit that my hypothyroidism has anything to do with my PCOS. Hair loss is a symptom of both high androgen and low thyroid. Spironolact is an anti androgen that lowers the male hormone that causes male pattern baldness and excess hair where men usually get it. Men usually take spironolact for prostate problems due to high androgen so it is a diarrhetic. Also you can’t take it if you are trying to get pregnant because it will affect a male fetus’s male hormone development causing birth defects.

Hillymart March 24, 2012 at 8:09 pm

Ok, here it goes…

I am 23 years old (24 in October), and I have been experiencing excessive shedding since I was about 15. Around the time that my hair loss had started, my menstrual cycle started to become irregular, until it was spaced out over 6 months between periods, and then they eventually stopped. The first time I saw a doctor regarding my hair loss, he just told me that it must be stress and/or malnutrition, so I continued to believe that through my college years. I have seen many doctors/nurse practitioners that have continued to tell me that my irregular periods must be due to the fact that I’m overweight, but they also kept doing countless blood tests that kept coming back normal (except for high triglycerides).

My hair loss has gotten worse over time, to the point that I am balding, and I have to wear my hear up in a headband everyday in public to hide my frontal balding area. After researching all of my symptoms (Oily scalp/face, irregular/absent periods, scalp hair loss), I considered the possibility of PCOS. I made a schedule with my local clinic (I am uninsured), and the nurse practitioner told me that I was probably right. After having a blood test done, she put me on Metformin (1000mg. per day), and referred me to a gynecologist. I went to the gyno and I feel like she was not very concerned with my case, but she put me on a birth control pill to regulate my menstrual cycle. She sent me to get a pelvic ultrasound done, which confirmed my self-diagnosis. I returned with my original nurse, who referred me to Endocrinology. I found one here in San Diego who specializes in reproductive health, including PCOS.

I finally went to see the Endocrinologist who confirmed PCOS, and he increased the daily dosage of Metformin to 1500mg per day, in order to prevent diabetes (since it runs in both sides of my family), and he also put me on 200mg of Spironolactone per day. It has been 2 days since I started Spiro, and I am really hoping that it works for me. I don’t want to be bald by the age of 30. On top of that, I am paying everything out of pocket, since I do not have insurance. PLEASE WORK, it’s my LAST resort!!!

Every March 25, 2012 at 10:12 am

Wow i’am so thrill on all the good info on this site..I was diagnosed with PCOS 10 years ago, and I have been dealing with hair loss ,the doctor prescribed metformin and especnorolactone he says it would help with my hair loss but no good results on that yet..I have lost ten pound ,what I notice by me loosing the wt. is less facial hair and less dark spot around my neck.

Lakshmy March 25, 2012 at 11:30 am

Hi All,
I have been reading all this.I suffer from PCOS and have problems like facial hair,irregular period.My doc said it will reduce if I reduce weight.The truth is it does help.I checked my androgen level after reducing 3 kg of weight and it helped.It really showed a difference. Please reduce weight that is the only solution.

Louiza March 26, 2012 at 2:31 pm

Hello ladies

In 2011 when I turned 18 I diagnosed myself with PCOS when I looked up all my symptoms on the internet. So I went to the doctor just to make sure, I was told that I self diagnosed myself correctly.

I am getting treated for it but its not helping the hair loss at all. I’m getting my period often after I didn’t get it for months last year. I’m still experiencing the hair loss on my hairbrush and in the shower sticking to my skin. The acne is better also but I can’t say its completely clear. Its so frustrating to lose hair where I want it, and grow hair where I don’t want it.

It really does break ones confidence. I’m glad I’m not the only one going through this. I really don’t know what to do anymore. I even use Vigro for thinning hair but it doesn’t help. I can still see my sculp and it makes me sick. Sometimes I cry and wonder why its happening to me.

I’m going to look in to some other treatment options. Strongs ladies.

Anna April 4, 2012 at 10:38 am

I don’t usually write on websites, but I found something that helps and since I know how devastating hair loss is, I’m hoping this will help someone. I’ve always had problems with hair loss. I should mention that I am overweight and that I had PCOS for years without knowing i had it. After taking some birth control pills, I got rid of the tumors and no other cysts appeared. However after some stressful events in my life my hair started shedding like never before. I lost about 400 hairs daily for about a month and it brought me up to a point where i was ashamed to get out of my house. For years I tried everything. I tried vitamins, external lotions, I went to countless doctors and everybody just told me i’m perfectly healthy and it’s probably just my hormones. Although I was a bit low on cash I eventually tried mesotherapy. This is a procedure in which doctors inject your scalp with different testosterone inhibitors, hyaluronic acid to help tissue and hair follicles, as well as hair growth stimulants. I’m telling you it did wonders. It changed my life. In about 2 weeks (I had 2 mesotherapy sessions per week) i noticed lots and lots of little hairs growing. In 3-4 weeks my hair was falling normally (about 50 hairs per day at most). At the end of each session, my doctor also used Hyperbaric oxygen therapy. That’s a procedure that helps some of the vitamin mix penetrate the scalp better and it’s basically just chilly air coming out of a little machine. Right now, after a month and a half of doing this treatment I can honestly say that I looked in the mirror one day and i wanted to cry. I don’t remember the last time i had so much hair and I wasn’t ashamed anymore to go in places with bright lights, where people could notice that I am partially bald. I am from Romania and I’ll move to the states in a week or so. I’m really sorry I can’t take this doctor with me and I’m hoping to find someone as good as she is, because i know a lot of doctors simply don’t know how to mix things to help your hair. Check it out and maybe you’ll find a doctor that does this in your city or town. It has changed my life.

midori April 30, 2012 at 12:15 am

hi, i have problem with hair loss for about 4 years n now it become more baldy… im soo sad… that cause me stress… n im stress also because i diagnose with PCOS 6 years ago…. while im check with my docter when i want to concieve or want to have baby…. so im stressful of im trying to have baby n want my hair growth back for 6 years… now i dont know what to do…. docter ask me to reduce my weight now so now im trying to lose weight so i can get pregnant…. just take metformin n folic acid for 4 years now…. but still not pregnant n still loss my hair…. so i just pray n try to lose weight n take my medication for a big hope of success…. tq

Maz August 14, 2012 at 4:52 am

Hi everyone,

I stumbled on this post and felt I had to share my story in case it helps anyone. I was diagnosed with pcos about 10 yrs ago (when I was 21) it started stortly after I got married. I was always very thin but gained a lot of weight when I met my husband (which was a big factor leading to the PCOS). I went to my dr and complained that I’m losing hair and gaining facial hair and weight. Straight away she said its PCOS and did all the test to confirm. I tried several things and saw many DR’s and they all told to take metformin and loose weight. I tried this half heartedly for a while but saw no results. I tried vitamins and nothing was stopping the hair loss.

Several years later I had one cyst that grew really big and burst and cause severe internal bleeding. Within 3 hours I lost 50% of the blood in my body and had to have emergency surgery as well as 3 blood transfusion. I slipped into a coma and nearly died but thankfully DR’s stopped the bleeding and I recovered. After that Dr’s advised me that I really should consider removing my left ovary as it seemed this was causing large cysts every month and they were worried. At this stage my hubby and I didn’t have kids so removing an ovary was not an option do they told me to start trying for a baby. We did but I was hardly ovulating due to the PCOS. I then made it an absolute goal to loose weight. In six months I lost 21kg (about 45pounds). After this virtually all of my PCOS symptoms disappeared. The only extra thing I was taking was iron and folic acid (this were mainly for the hair loss). Hair loss stopped and actually I regained a lot of the hair I lost. Facial hair nearly disappeared. I started to ovulate and get regular periods and no more large painful cysts.
I fell pregnant 8 months later. My daughter is now 3.
After having her I didn’t lose the pregnancy weight and recently gained a little more. I’ve started to notice the facial hair come back and my hair is shedding again. I’ve just recently gone back to metformin and started a similar diet and exercise routine that helped me lose weight a few years back. I’m hoping I have the same will power that I had last time to lose so much weight because it changed my life around and I’m living proof that it’s the only way to get long term results. I hope this helps you.

Cat August 24, 2012 at 11:18 am

Hi ladies! I wanted to share with you what helped me because I too have been diagnosed with pcos and had ALL the classic symptoms (seriously, ALL of them, some pretty severe). Hair thinning and shedding was a big one, along with acne. After taking bc pills for a few years and still dealing with the symptoms, I realized that this was just a bandaid and I needed to do more.. I’ve read most of these posts and the one posted by Oenone pretty much hits the nail on the head for me! Its really lengthy but its detailed and i’m proof that it works!

So what did i do??? At first, I lost weight through exercise and counting calories. I started at 178 lbs and went down to 145 at 5’4 . i did see a dramatic improvement with my symptoms but they were still there, especially the hair loss. I maintained that weight for some time and tried many different supplements for my hair loss but nothing seemed to work.

5 months ago i began a gluten-free diet. I cut out everything that contained wheat (check your labels!) and I also removed sugar from my diet (which was TOUGH for me because I used to have a sinful dessert daily and i could literally eat pasta all day, every day.. sometimes i did!) Ive stuck to it for the most part, with only a handful of days that i fell off the wagon. In addition to a gluten free diet, i do cardio at least 5 times a week. No matter what, I drag myself to the gym. Regular exercise is absolutely necessary for EVERYONE. We were just made that way! I’d also like to add i’ve tried low-carb but have never been able to stick to it. This is a great alternative because just by eliminating gluten, you’ll reduce carb and cal intake. You’ll also still be able to eat the starchy comforting things like rice and potatoes.. AND you will consume a lot less processed, man-made food.

Anyway, on to the goods: I recently noticed I wasn’t shedding hair in the shower and I wasn’t sure if it was just wishful thinking but i kept thinking my ponytail feels fuller. So, a few days ago my boyfriend (who is very aware of my shedding.. i have long black hair and its everywhere) said my hair looked thicker without me ever mentioning it! So i guess it wasn’t just me that noticed! Also, I feel wonderful! Very energetic, i don’t wake up with sinus congestion, no breakouts, and recently at a family gathering, my sister said I was glowing! no one has ever said that about me. that was also without mentioning to anyone that i had been doing something different. Oh, also I used to struggle to keep my weight in the healthy bmi zone. Even with diet and exercise it seemed like it took months to lose 5 pounds but a week to gain it all back, but i lost weight and now I can easily maintain it 130 and i don’t seem to gain it back rapidly if i have a few cheat days.

I did some research online and found there is a big link between pcos, insulin resistance (eventually giving way to diabetes) and gluten intolerance. There are plenty of resources on the internet if you are interested in learning more.

I really wish my success gives you hope. I’m taking my time to type this only to help. I have no other motive to share my story and i am definitely not selling anything… its free to be gluten free :) and because i know how hopeless, depressed, and very socially withdrawn i became dealing with pcos.. I would never wish that on another person. Good luck ladies and don’t give up!

Sonia September 1, 2012 at 6:43 pm

Hello ladies,
I’m new to this website but after reading several stories I had a need to share some experiences with you all.
Like many women here I started to lose hair very early (at the age of 13, when I first started puberty, I am now 32). All the embarrassing moments you girls mentioned (from hiding from people, dealing with crazy doctors, facing the confidence issue, dating and friends issues), I’ve been through all. My mom very often calls me a hero because I’m able to rise above all that and try to find the solution. And I think I’m on to something,a solution for my hair loss .
After seeing many doctors and spending time on the Internet searching for “the solution” I decided to go see an endocrinologist and ask her to test my insulin levels. Guess what? I’m insulin resistant. Prior to seeing my endocrinologist I saw gynecologist and she told me I have PCOS. She told me to just go back on birth control but my endocrinologist told me that birth control is just a make up, it doesn’t solve the problem.
The reason for hair loss, PCOS, high androgen levels, infertility, weight gain, acne, all that is INSULIN RESISTANCE!!! Many women are not tested for that and that’s a big problem.
My endocrinologist prescribed me Metformin (500 mg twice a day). I’ve been using that stuff for about 10 days and let me tell you that I already see HUGE improvement in my skin (reduced breakouts, complexion is changing dramatically for better) and I also lost 3 pounds without even trying. I have to go on insulin resistance diet (which is basically low-glycemic diet) and take Metformin and lose some weight, but my doctor told me that I should see improvements in about 3-6 months when it comes to my hair.
So ladies, I know you have your own battles but try to test yourself for insulin resistance and see if you have high insulin levels (that means that you are, just like me pre-diabetic). I’m about 40 pounds overweight person but very active and it was so hard for me to understand why the weight would not come off and why my hair is not improving when I’m using every possible technique and medicine for hair loss.
I will let you know how my journey is going but hopefully I was able to help at least one person here who might also discover that her hair loss is related to insulin resistance. Stay strong ladies and keep supporting each other.

Tranell September 10, 2012 at 8:43 am

Hi! I had to join in. I was looking up info regarding scalp hair growth, because I’m tired of being forced to wear a scarf. Yes, I understand that my hair does not make me….but still. Lol. I self diagnosed my PCOS back in 2009, I think. 2 yeas prior to that, my hairline started receding. I gained weight after I got my tubes tied. I started having trouble sleeping. Doctors just told me to lose weight. Really? I started on Metformin, but couldn’t handle it. switched to Actos eventually, but it was banned in Germany-where I live now-for diabetics. Doctor had no clue about PCOS. Assumed I was diabetic, since I was taking Met! I agreed to go on Met, because I wanted to lose weight. The stomach pain was horrible! I finally got used to it, I thought. I began having bad stomach pain, eventually had trouble breathing going up stairs and short inclines. From Ocotber 2011 to July 2012, I’m going to the doctor only to be told nothing’s wrong with me. Severe left side pain later, I self diagnose on the computer and go see my Internist. I’m adamant, so he orders a CAT scan on my kidneys and abdomen. While checking those, they find something wrong with my left lung. Yeah. I go back for another CAT scan, get sent to a specialist. My left lung has shrunk. I was at 45% breathing capacity! I was sent to a speciality hospital. 2 surgeries later, I was diagnosed with an unspecified lung fibrosis. I’m currently taking steroids and feel much better. Per the computer, GERD can cause this condition. My indigestion was so bad, I was swallowing acid and killing my lung. I still would like to see a stomach doctor. I got off of all medications and am going natural. I take D-Chiro instead of Met. It’s said that Met just treats the symptoms. I’m taking Milk Thistle and Saw Palmetto for the excessive hair growth. Manganese and just read that Spirulina is supposed to be really good for a lot things! Ceylon Cinnamon, Fish oil and Calcium.
Never give up ladies! You are not alone! Now I look at women and wonder who has PCOS and don’t know….I took a German class and made friends with another young lady. She needed a ride one day, while we were talking, I told her I had PCOS. Funny thing is..she did too!
Strength in numbers! Continue to share your stories, do your research and don’t knock what others are doing. We are all different! Much love!

feegy September 18, 2012 at 1:48 am

Hey Stacy :) I am a 25 years old woman and I am going through the same thing as you! It is very frustrating!
I have a pco & hair thinning, and yes the doctor told me that there is not cure I just have to lose my weight, I am over weight though and I lost my weight begore and my period came normal.. Maybe I should do that? But my question is.. My doctor told me that pco happens to women with overweight, I have some overweight friend and they are normal. And about the Tumour, I had one before but it is gone , I hope. *sigh*

Sylvia November 20, 2012 at 7:03 pm

Hello everyone.. I have had pcos since I can remember but was diagnosed in 2001 when I was 31.. Anyways wanted to share..there are different stages of pcos ..some women can have kids.. Some cannot.. Some are overweight some are not, some have acne some do not….but all have ovaries that look like craters…and have higher levels of testosterone…as for me, I was blessed to have 2… Anyways to hold my 2 nd child I had to use progesterone suppositories until my first trimester.. I am a poser that can ovulate but I have low levels of progesterone thus the suppositories for the first tri… Anyways to have a menstrual monthly I have been taking vitex 3 pills a day… For my hair & nails been taking biotin 5 to 10mg.. If u would like more info let me know..I have done lots of research…I knew something was wrong all my life but in 2001 it got a name PCOS… So i have researched it..knowledge is power…blessings

HSS January 7, 2013 at 3:38 am

Hi, I found this site when I was researching causes of hairfall in women n I’m so glad I did. I am going to my GP tomorrow and get the help I need to find out the cause of my hairfall and stop it if possible.
I too was diagnosed with pros at puberty due to excessive facial hair irregular periods and extreme weight gain. Dinette and laser therapy helped control most of my issues then and I conceived as soon as I tried for a baby so no issues with fertility.
I recently noticed that the front of my scalp was more visible (like post partum hairloss) i wasn’t really worried thinking its a transient thing BUT NOT ANYMORE. If there is one thing I have learnt from reading all the previous posts (yes I have read each one) is that once the hair goes it usually doesn’t come back so I will ask my gp for tests AND a appointment with the endocrinologist aswell so I can get the right medication.
I have had brittle nails aswell so mite start a multivitamin pill aswell..
Please ladies research your symptoms before u go to see a doctor and plan how you will speak to him/her to convince them to take ur issues seriously.
Will report back in a couple of months with good news hopefully..

farah February 2, 2013 at 3:03 pm

hi, i just been diagnosed with PCOS, im experiencing soo much hair loss, half of my hair is gone. and im getting bold on the front and top part of my head.
im seeing a Gyno now, but it doesnt do much help. im afraid that i will be bold soon and not getting my hair back, as i used to have really thick volumized hair. can anyone advice me on what i should do to stop this ?

Tracy May 11, 2013 at 10:38 am

It’s been a long time since I posted on site like this…but I thought it might help you guys to hear from someone who’s a bit older than the average poster. I have PCOS but I wasn’t diagnosed until I was close to 30 years old. I had all the classic symptoms EXCEPT the weight gain (I’ve always been more or less normal to thin). But it didn’t matter…I still had few and painful periods; body and facial hair; polycystic ovaries; wild mood swings and depression; blood sugar issues; and eventually by the time I was nearing 30, had lost about 2/3ds of my formerly very thick hair.

I’m not 42, and I’ve managed my condition fairly successfully (with relatively little help from doctors, I might add) for about 15 years. You can’t cure PCOS, so the thing to aim for is managing the condition to make yourself as healthy as possible. In most cases, the severity of the symptoms will lessen if you can do this.

Many doctors are extremely uneducated about PCOS, so I want to tell you the most important things currently known about it. It is NOT caused by being overweight (I am 5’4″ and average 115, but I had symptoms even when I weighed around 105); however, being overweight usually worsens PCOS in a feedback loop. Excess fat creates further hormonal havoc and insulin resistance, and insulin resistance makes it far easier to gain weight and far harder to lose it. As far as is currently known, PCOS is a complex disorder, which is likely triggered by a genetic predisposition combined with environmental triggers (hormes/diet/toxins, etc.) that leads to abnormal insulin/glucose function. IT IS VERY SIMILAR TO DIABETES. Because of this, the long-term health consequences of ignoring it can lead to actual diabetes, heart disease, etc.

So if you have been diagnosed with PCOS, after the natural time of being sad, scared, depressed and so on, you really need to start being proactive about taking responsibility for your long-term health, and THE MOST IMPORTANT FIRST STEP TO MANAGING PCOS IS ADOPTING THE LIFESTYLE OF A DIABETIC. Insulin sensitizers such as metformin, medications to combat your elevated male hormones, bcps to regular your periods, and so on…these might be good additional lines of treatment for some women with PCOS, but THEY DO NOT ATTACK THE FOUNDATION OF THE DISORDER, which is that our bodies do not process sugar correctly.

IMPORTANT ADVICE FROM SOMEONE FOR WHOM IT HAS WORKED

If you want to manage PCOS, the only absolute must is that you have to adopt the diet/lifestyle of a diabetic. That means very low sugar, very low simple carbohydrates (‘white’ stuff like white flower, white rice, baked potatoes, regular pasta, etc.), very little processed food. Eat whole fruits/veggies; complex whole-grain carbs; healthy fats such as nuts, avocados, oily fish, and olive oil; lean meats, etc. Exercise regularly. I know this is really depressing and the change can seem overwhelming, but there just is no magic pill. (I should point out that the epidemic of ‘regular’ obesity and health issues in our country are partly due to the fact that it is simply hard for people to commit to consistently eating/living in a healthy way, even though most of us know what that is).

Anyway, there’s no way around this. If you want to manage PCOS effectively, you have to do this, and you have to figure out how to stick to it. For life. I’m not going to pretend it’s easy, especially at first…it took me several years to learn new eating habits. But like any habit, if you can figure out how to stick to it, eventually it will become ‘normal’ and won’t require so much thought/planning/effort. Word of advice: don’t “diet” ever. Don’t make up absolute rules and restrictions and put foods completely off limits. It helped me to figure out how to get the most health/nutrition ‘bang’ for each calorie ‘buck’, but I never counted calories. What you want to do is identify healthier choices and healthier patterns of eating and start substituting them in for every meal, and only eat unhealthy foods occasionally, and in small amounts. Does this sound like the same old boring diet advice? Well it is. The fact is, we have an epidemic of bad health that is mostly caused by what we put in our mouths. And most of the time, we can control that.

In addition to the foundation of diet/lifestyle, you might need other types of medication, etc., to treat your particular PCOS symptoms, but the lifestyle change really needs to be the foundational treatment.

In my own case, my symptoms (as is typical) started when I was a young teen, and I lived with them for years, ending up quite ill before I was diagnosed. Then it took me a couple years of work to change my lifestyle. In my particular case, diet was the only change needed to normalize or near-normalize nearly all symptoms. Periods began coming like clockwork, mood swings and depression stopped, body and facial hair lessened. However, it didn’t fix everything. I still have some facial hair and slightly heavier body hair. And although the dramatic hair loss stopped, and some hair did regrow, it has never approached what it was when I was young.

This is a hair-loss forum, so I’ll close with thoughts on that. Everyone is different, of course. For some women, bcps can really help with hair-related symptoms. For other, they make it worse. Sometimes it’s the type of bcp that matters (all pills contain the same synthetic estrogen, in different amounts, but there are many types of synthetic progesterone and women’s bodies all react differently to them). For some women, the anti-androgen medications really help. But the unfortunate truth is that hormone-related hair loss is very difficult to treat. Men have been trying to cure baldness for probably centuries, without success. (Their baldness is caused by a similar genetic mechanism, with some men possessing hair follicles that are overly sensitive to testosterone levels that are, in men’s cases, normal). It’s certainly possible that a miracle cure to restart dormant hair follicles will be found in our lifetimes, but honestly I wouldn’t count on it.

The best advice I can give is to focus on treating the root cause of your PCOS, rather than obsessing just over acne, or hair, or weight.

This can be hard, I know. Believe me, I know all about the terror of suddenly realizing that you can see your scalp under direct light, obsessing over shaving and plucking and bleaching and hairstyles and hats. There will be times you feel despair and helplessness. That’s ok. Like many people with chronic illnesses, we were dealt a shitty genetic hand and it definitely sucks. But in the end, my fellow women, we are all going to end up old and ugly ANYWAY. Even the most beautiful, sleek, thin, thick-haired models will. There are plenty of people out there who are perfectly healthy, and still look very unattractive, and they struggle with feeling good about their looks. There are others who simply lack the financial resources to take care of things like bad teeth, etc. The world is filled with people depressed about their looks, and about serious chronic health issues. So what is the option for all of these people? Stop living? If we allow this to stop us from living, then it has beaten us. We are all better; we are all MORE than our hair/skin/fat/acne/fertility, etc.

Shahistahe August 28, 2013 at 2:07 am

hey,

its obvious i am typing this cause i have PCOS, the disease that changed my life…if it was a person trust me i’d kill it…..so i always had beautiful hair nobody in my family has had pcos or any such disorder, but i am the unfortunate one….i few weeks i ago i was diagnosed for PCOS, intitally it started with terrible hair loss…so much so that i started crying frantically…what else can you do anyway right?? went to a dermat she has put me on aldactone 100 mg….but honesty doesnt seem to work…m supposed to get married in 6 months and by then i dont think i will have any hair left…depression is over the top i just find myself crying and depressed most of the time……and i wonder if people actually understands what hair means to a gurl…..but the sad part it most of the people dont….which sucks all the more……anyway i dont think there is any help we are stuck in this vicious circle which we will never be able to get out of………..i sometimes feel like dying rather than looking like this…….all the excitement for my wedding is gone……..i just hope that science actually considers finding a cause for PCOS and take it seriously only then we will be rescued…………….sorry for venting out all this……….but this is the only place where i think people will understand my pain…..god bless

Joshni August 29, 2013 at 11:38 am

Hi
Am joshni,17 year old..living a horribly,devastated life of pcos,it all started when I hit puberty at the age of 11 I started developing mild hirsutism,back then I wasn’t sure wat it was n thought it wud go away,but it took a couple years hor the hirsutism to actually bother me,along the way I realized my scalp hair was thinning,i had probly one of the worlds thickest scalp hair any girl could hav,thats why it took a while to notice it was thinning and I hadn’t gotten taller almost at all,now my hair is like a rats tail…so thin and it kills me everyday to see myself like this I hate my life it’s so devastating I’ve cried more than a million times for this problem,but since abt a year my hirsutism and hair thinning so gotten seriously worse and am afraid I’ll go so bald n turn into a hairy man…that’s how I feel now,don’t even feel like a girl anymor because of this horrible hirsutism prob,from past 3 months I’ve been on homeopathy medication praying it’s my cure,…my doc told me to have good diet and excercise well that will gradual slow the problem by restoring hormonal balance I so badly want my thick hair to grow back on my scalp n all the hair on my body to vanish ,I have never talked how it’s affecting me to anybody in my life,too embarrassed for it,please help me

Joshni August 29, 2013 at 11:43 am

Please,I am desperate for any kind of advice, or any psychological support
This is killing me! It’s affecting my studies also,unable to focus on my studies please help me

Miss hayse July 25, 2014 at 5:12 pm

Hi ladies,

This page is very old – but my symptoms mirror so many of yours. I did want to mention that in terms of weight loss I have had great success with HCG injections. I think it takes a hormone to get rid of hormonal weight. I am still working on losing the full 40 lbs I gained in 40 days two years ago, but I’m much closer today and this was after two years of personal training, endocrinologist prescribed liquid diets, low carb, metformin, etc. I wish you all luck and I plan on trying many of your solutions for the hair shedding.

Beth November 1, 2014 at 9:29 am

I know this is an old post but here we go….

We found out we were having a baby and all was fine and in our 9th week we sadly lost our angel. This was devastating for me and my hubby I then went on to have complications and retrained “products” of our pregnancy I had to have an operation and was just so low. We decided to start trying as soon as we can and 6 month later we were trying for another baby. Unfortunately we couldn’t conceive this time which was strange as we had no problems conceiving with our 3 previous pregnancy. And then it happened!

I was working 12 hour shifts and on a friday night I left my work and went to my mom’s for family meal, my hair was in a pin up and uncomfortable after doing a 12 hour shift. One buy one I removed my hair clips and was brushing my hair ( which as always been very long and strong) I noticed a small bald patch in the center of my hair and looked at my brush it had abnormal amount of hair on it. I called for my mom who had a further look and found a large bald patch at the back of my head! I freaked out and suffered a panic attack. I went straight to the doctors who said I was over reacting and diagnosed me with alopecia.

As the days went on the more hair I lost. At least 95% of my head was now completely bald! I was so depressed I couldn’t face my work or going out in public. My husband found it hard for him to watch me going through this.

The day I had to get a wig tore me up. My confidence was completely gone. I hated myself and blamed myself I thought God was punishing me for losing my baby.

I felt I wasn’t a woman any more that my femininity was tole from me! I hated my self and broke all the mirrors in my house as I couldn’t bare seeing myself! I couldn’t fall pregnant and I was now completely bald. I received steroid injections into my skull and was told it might help the re-growth it might not! This was discouraging and I spent most of my time in my bed.

I am ok wearing wigs now or hats when im at home. Its still emotionally hard as it was when it first happened. My husband reminds me how beautiful I am every day but I cant see it. I don’t think I ever will. I am luck to have the support I do. Time heals all they say

Catherine November 5, 2014 at 5:51 pm

Hi Stacey,
I just read this article today. 11/5/2014.
I would suggest 10mg of Biotin a day (yes- 10,000 mcg) also be careful about eating foods with “Pantothenic acid”– PER> it can also lower levels of biotin in the body.
In 30 days you will see a difference. Your hair will start to grow.
Best wishes.
~Catherine

Leave a Comment

Join the Women's Hair Loss Project Network to meet other women
with hair loss. Share your thoughts, comment, rant, rave, laugh, cry...communicate. Click To Join
Just Launched - Join the NEW Forum for The Women's Hair Loss Project. If you are already an existing member of the Network then you already have an account set up and will need to use the Reset Password link to enable your forum account. Click To Join

Previous post:

Next post: