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Stacey 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
Technorati Tags: hair loss, hair thinning, Nioxin, PCOS
{ 58 comments… read them below or add one }
Stacey 12.13.07 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 01.10.08 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 01.10.08 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 01.19.08 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 01.20.08 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 02.07.08 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 02.08.08 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 02.09.08 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 02.19.08 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 03.01.08 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 05.04.08 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 05.27.08 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 06.04.08 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 07.05.08 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 07.24.08 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 07.30.08 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 07.30.08 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 08.20.08 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 08.22.08 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 08.31.08 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 09.02.08 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 09.08.08 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 09.11.08 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 09.11.08 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 09.13.08 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 09.13.08 at 12:26 pm
I’m sorry…500mg of vitamin c,
seema 09.13.08 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 09.15.08 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 11.19.08 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 11.21.08 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 11.24.08 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 12.06.08 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 04.21.09 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 05.10.09 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 05.10.09 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 05.11.09 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 07.09.09 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 07.10.09 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 07.13.09 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 08.23.09 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 10.18.09 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 10.20.09 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 10.20.09 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 10.22.09 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 11.03.09 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 11.13.09 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 11.17.09 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 11.25.09 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 01.05.10 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 01.05.10 at 9:02 pm
O. I forgot to ADD:
Nioxin Scalp Activating Treatment - use: Everyday until I run out.
Peggy 01.27.10 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 01.28.10 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 02.24.10 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 02.25.10 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.
so glad to find a place I could vent my frustration without feeling looked down upon.
Jade 02.28.10 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 02.28.10 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 03.03.10 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 03.14.10 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