I had written awhile back but wanted to send you my story again, and this time post some positive updates.

One thing that I noticed way back when my hairloss journey started, was that the negative posts and testimonials by far outweighed the positive ones. My fear was that most women were losing this hairloss battle. My hope was that once they solved their hairloss nightmare, they were too busy not worrying about their hair to post their updates. I want to submit my story because I am having positive results as I attempt to figure out what has happened to my hair and how to stop the cycle of loss.

It was 2004 when my life changed. It was 3 months after I had stopped taking birth control (alesse) and my hair was coming out in ropes. I’ll never forget taking a shower before going out one Friday evening, and my hands were covered with hair. At the time, I had no clue that it was related to the cessation of using birth control. I thought I was dying, from cancer, from something. I stayed home that night and didn’t go out, I’ll never forget sobbing the whole evening, scouring the internet trying to figure out what was going on. My vanity was bruised. I remember feeling too ugly and embarrassed to be social or even go to the gym. I took a 3 week leave of absence from my job to go be with my then-boyfriend (now wonderful husband!) in Europe where he was for work. I needed his support and he was truly there for me no matter how embarrassed I was. I had extensions put in after much research, just to make me feel like I had hair again. I did everything I could to mask what was going on with my hair, while I devoured information to figure out what happened to me. It was then that I realized it was the birth control pill.

I made the mistake of jumping back on birth control because doctors told me that I might be responsive to a hair-friendly pill like Yaz or Yasmin. I chose Yasmin and figured I would just stay on it the rest of my life if I had to. Back then, all I cared about was how I looked, not about my health. I kept the extensions in for about 2 years. One day I went into the salon to get them done and my stylist said - “You know you don’t need these anymore. They are just your security right now. Your hair is fine.” What?? My hair was fine?? I was so used to the weight of the extensions that I didn’t believe her. She washed my hair and cut it without the extensions, and we blowed it dry. She was right, I looked totally normal. I was ELATED. I don’t think I stopped touching my hair for days. It was all mine, and I looked absolutely normal. It had thin spots, sure, but I could wear it up or down and it had body and I looked like me again. It was not nearly as thick as it was before the loss, but it was enough. [click to continue...]

In September of 2007 Taylor shared her story with the Women’s Hair Loss Project. She has now written to share her update with us.
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As of June 08 I began to be able to stand and walk, after beginning a new treatment that was made available to treat the nerve damage I had in my legs and back from my accident. Now, almost a year later I’m up as if nothing ever had gone wrong. I’m still getting a hang of the whole running thing though, it’s quite the sight. All my health issues completely disappeared, but alopecia decided to come back and pay me a visit.

My hair began to fall out in late November, just before I graduated from college. At first it was just a little more then usual when I was washing my hair. I reasoned that it was because I hadn’t brushed it for a few days so all the hair that fell out naturally had not yet been removed. It became more and more noticeable until there was just no convincing myself that I wasn’t relapsing. I was devastated because I felt that for once my life had been going right, and for the first time in so long I had the opportunity to just be a normal girl and fit in with everyone else. I felt like I was being punished, as ridiculous as it may sound.

One night in the early hours of the morning I came back to the Women’s Hair Loss Project to read what I wrote about my first experience with Alopecia. I felt like a hypocrite, talking about how inner beauty matters the most and there I was falling to pieces because I was losing my hair again. But I had to laugh at how much times had changed since re-reading what I wrote (especially about my ex!). This time around I was very lucky to have such a good support system; my amazing friends Jess and Matt who were there to pick me up off the floor and knock some sense into me. I really don’t know what I would’ve done without them. The biggest lesson I’ve learnt since Alopecia’s… graceful return is that what makes us different, makes us beautiful. Our hardships in life really define who we are as a person, and without them we wouldn’t learn and we wouldn’t grow. Alopecia makes me look unique, which is something I’ve come to embrace. I know so many people who look and act like clones, being a carbon copy of someone else would be a nightmare to me. [click to continue...]

I never really stop to think how much effort I put into trying NOT to think about my hair loss and how exhausting not thinking about my hair loss actually is.

I avoid mirrors, strong overhead restaurant lighting, I turn the bathroom lights off before going in (in my house). I’d do it in public to if I didn’t think I’d get tons of grumbles and nasty comments from the women already in there. Ha! Unless they had hair loss, then they’d give me a high five. Typically when I need light I use softer lights that are sort of dimmed.

Up in the morning, early 5:00am start to the day. I shower and I comb my hair quickly trying to get past the torture. Shower is always fun pulling the hair out of all sorts of odd places including my deriere. Oops stuck between my fingers, rinse it off, rinse it off or paste it on the bathroom wall. Always fun to look at after. Comb, scoop, comb, scoop, hair into the toilet. I pull my hair back in a ponytail or up in a clip to avoid feeling the hair fall all day. However, (as thin hair ladies know) the clip can hurt since it sits so close to the scalp with none of that pesky “hair padding,” it can become quite itchy and bothersome, so I loosen it up to make sure it’s perfect and set for the day. Oops now my hair looks flat on the left side. Do it again…oops now it’s flat on the right. Oh my gosh I look like a human ice cream cone, with no hair on the sides and a little on the top, the shape of my head has me looking like a Mister Softee. Do it again, darn it now my gaping center part is shining for all the world to see. Hummm I don’t remember it being that thin before. Maybe I should use the blow dryer some more. Blow to the left, blow it to the right. Apply clip strategy again, ah this “style” is okay. My simple clip style takes longer than it looks, same for the ponytail. This hair over that hair, brush here, brush there, trying to maximize every strand. Volumizing shampoo, volumizing conditioner, volumizing spray, volumizing mousse, plump this plump that. Poof it’s still flat. Part my hair one millimeter to the left of its normal part, nope, one millimeter to the right, yes that’s just perfect. Now I can begin my day. I glance at my watch, I wonder what activities are left to do on this Saturday at 10pm.

Happy Sunday Ladies! [click to continue...]

A blog from the network, written by Bonnie.

Well, this was intended be a simple little blog about asking you all to sign a petition asking Bayer, the manufacturer of Mirena, to fully disclose the side effects of Mirena to potential patients.  But in checking back to the Mirena website to make sure I accurately used their wording concerning hair loss, I have now found that instead of just burying it as an “uncommon side effect, affecting less than 5% of users,” they have now removed it all together.  I am so outraged that I am literally shaking!  I am almost in tears.  When I initially figured out that the Mirena was what was causing my hair loss, I found on their website that it listed “hair loss” as an uncommon side effect (though I do not feel that something affecting up to 1 in 20 users should be considered “uncommon”).  In January, they updated their site to read “changes in normal hair growth cycles.”  And now, the only place that you can find anything listed on their site about hair loss is under the Physician Information tab.  It lists Alopecia as an uncommon side effect.  “Alopecia is NOT listed in the Patient Information or Safety Information section at all.  It simply says, “for a complete list of side effects, please contact your health care provider.”  The pamphlet I was given did not list hair loss, alopecia or changes in normal hair growth cycles.  How in the world are women supposed to get accurate information?

I had a Mirena for 11 months beginning in 11/07.  Without even going into the horror story of how it was inserted, I basically bled for almost 11 months straight, and was told this was “normal” and that it would eventually stop.  I noticed significant hair loss in August 2008 and was diagnosed with a very low ferritin level (I guess that’s what happens when you bleed literally all of the time!).  I did mention the Mirena to my GP but she did not think it was a factor.  I started taking iron supplements, as well as many other vitamins, but my hair loss just continued and I became very depressed.  My hair loss got worse and worse and I just could not figure out what was causing it.  I was literally always the healthiest person I knew. [click to continue...]

This beautiful story of inspiration, strength and understanding  was written by Becca, a member of The Women’s Hair Loss Project Network.

Yesterday started like one of those days that you don’t even want to get out of bed for me. Tuesday, my 2 year old and I both had the stomach flu, so between her vomiting anything that went in and me having a mind numbing headache, we survived. My husband decided that he would take the day off yesterday to help us recooperate and maybe do the five loads of vomit laundry that we accumulated. I had to get my normal bloodwork done, I have it done every two weeks because of my hypothyroidism, so we had to find a lab that would accept my new insurance. I had some bad experiences in the past with waiting in the lobby of these places, till they actually forgot I was there and turned out all the lights. I didn’t want another experience like that, especially being sicker than I normally am.

I reluctantly put on a wig, it was colder here so no bald head outside, and we left the house. Once we got to the labcorp building I just wanted to go home and lay in bed with a bucket. After registering with what I thought was just a receptionist, she informed me she does the whole shebang, registery, bloodwork, and follow-up. While she was entering all my new information, she turned around and said, “Ya know, I was just diagnosed with what you are getting bloodwork for.” I laughed a little and said good luck! Here is a woman in her early 50’s, very put together, almost looking defeated when I said that. I realized how it came across and I explained to her that what I have is a very rare form of the disease and all my symptoms are extremely heightened. She asked me about some of the symptoms, like my hands and feet fall asleep, my joints ache, exhaustion constantly, etc. And then she mentioned hair loss. I’m not one to get embarrassed, so I just told her, “Yeah, mine is so bad, I shaved my head a few weeks ago.” She just looked at me and then told me that she too, is having hair loss in quarter sized patches and it scares her. I thought of all you ladies immediately!! I could see in her face this look of upsetedness and sympathy. I knew what I had to do for her and the hairlossproject. I told her how devastating it was for me at first and how I found support with you ladies. I told her how I cried all the time at first and really felt alone. I told her that acceptance will come, no matter what happens with her hair. [click to continue...]

Hi, I’m a 19 year old girl who has suffered major hair thinning. I’ve just discovered about this community/project a few days ago. Uptil now, this seems to be probably the most resourceful place I’ve seen.

I’ve been pretty desperate for answers.

As a child, my hair was extremely thick. However, as I grew up, my hair become progressively thinner. Two years go, I went on an unhealthy diet and I started to really notice that my hair was extremely thin (also, my hair was falling out like crazy). I thought that it was due to the fact that I didn’t get enough vitamins, so I started to eat healthily again. Unfortunately or maybe fortunately, my hair only stopped shedding like crazy, but no new hair grew back to replace those I lost.

It has been 2 years, and my hair is still quite thin. Most people can’t see it, but I definitely can - especially when my hair is greasy or when I tie it in a ponytail (you can see my scalp very clearly).

I’ve read as much as I could on women hair loss, and nothing seems to really fit my symptoms. I took a blood test and it showed that my levels were perfectly fine.

After reading as much as I could, there were really only 2 diseases that sort of fit my simptoms.

1. Hypothyroidism - my mother has that
2. Androgenetic alopecia - my hair is thin all over my head and my hairline is not receeding.

However, the only thing that doesn’t seem to quite “fit” is the falling of my hair. My hair does not seem thinner than it was 2 years ago. I do not lose an excessive amount of hair (contrary to the many testimonies I’ve read). When I comb my hair after a shower, I would loose maybe 5-10 strands. In some ways, my hair loss seems proportionnal to the amount of hair I have.

I often get depressed because of the state of my hair - especially when I see my friends with thick hair and get to choose different styles of haircuts while I’m stuck to one. I can’t confirm with 100% certainty that my situation hasn’t worsen. From what I can see, it seems to have stabilized. But sometimes, when I look at old pictures, I start believing that it did in fact get worse. Afterwards, I panick and can’t sleep at night.

Questions:
Does androgenetic alopecia have different “levels” of hair loss? I haven’t taken any medication to help, but I know for sure that I do not lose a crazy amount of hair. However, I am also certain that this is certainly not normal for a teenage girl to have so little hair (I now have less than 50% of the hair I used to have as a child, and from the top of my head, my scalp is pretty visible). From what I can see, I do, in fact, have new hair that grow, but not many.

I am so desperate for answers. Although you may not have any precise answers for me, I’d greatly appreciate your point of view on my situation.

Thank you,
Linda

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Dear Linda,

Thanks for writing me and I’m sorry to hear that you are struggling with this. First things first, stop.. take a deep breath, let it all out and take a moment to reflect on how lucky you are that your hair loss has stabilized for the past two years. Losing 5 -10 hairs after a shower is remarkable, you’ll be the envy of all my readers

Having said that, I do understand your concerns and pain in having to deal with less hair than you had before. I must state upfront that I am not a physician and cannot provide medical information or diagnosis, anything I write is really just my opinion and knowledge gained from living with hair loss myself for the past 9 years (yikes that sounds like a lot). With that disclaimer out of the way I can continue on. [click to continue...]

When I was younger I never ever could have imagined that my destiny was to be a woman with hair loss. The thick mane (clearly on loan) that I was born with was only a temporary gift. Over the last 9 years I’ve suffered a lot, but I’ve also learned a lot. I’ve become a stronger individual and also someone is more compassionate, forgiving and understanding of others around me. I suppose depending on your religious standpoint one could argue that God had wanted to challenge me, test me and make me a better person. I’ve searched for answers high and low, a deeper understanding of why, why me? For myself to live and stay sane, I have to personally believe that there is a “reason” that this was thrust upon me at 21 years of age. So I go with that, whatever helps you sleep at night right? I practically slept through my 20’s feeling sadness and despair for the future… what will be tomorrow. I feel such a heaviness and sadness when I write that, a get a lump in my throat and my eyes begin to well up with tears. I feel a sadness for yesterday even though it’s gone and far behind. Almost like I’m mourning the years I’ve left behind, the years of hair loss. I look back and I realize it was so needless to stay in bed and hide from the world. All along the way I had enough hair to get by and not have the world know my dark little secret.

I would really like to drum that message into the minds of the women who are waking up today and realizing they are losing their hair. You still have A LOT of hair, more than you know and the world isn’t staring at it, only you are. Someone once asked me what I would do differently looking back on the years I’ve dealt with hair loss… I would have lived more. I would have said yes to more dinners and social gatherings, parties and quiet get togethers, I would have let my hair down instead of trying to hide what was only visible to myself. After all during all that time, I still had enough, but I was too focused on the worry of tomorrow to appreciate what I had today.

I am 30 years old now and don’t want to make that same mistake. There is no doubt my coping skills have far advanced over the years and I can snap out of a “down time” a lot faster. I still struggle with things like talking about my hair loss, letting others into my world. I still have a long way to go (hopefully with hair still on my head) in self acceptance, but I’m pretty proud at how far I’ve come. I still run away from mirrors and turn off lights, it is all apart of how I’ve learned to cope. I hope one day I’ll be able to stare at myself in a store window or leave the harsh lights on in the bathroom, look at my reflection and love what is looking back at me. This is me, this is who I am, I have female pattern hair loss… the hand has been dealt and now it’s is up to me to either learn from the past or guarantee myself future regrets.

~Y

http://community.womenshairlossproject.com/womenshairlossproject/

First let me say, you are in my thoughts and prayers and I am so sorry you are feeling so sad about your recent shed. I really do understand and I know how much sorrow hair loss causes. I just wanted to share my experience regarding synthroid and tell you that you might consider synthroid as the cause of your hair loss. I have been experiencing hair loss now for about 5 years; it has been one of the hardest things that I have ever had to deal with. My hair loss started immediately after I began yasmin (yes, I know it’s supposed to be low androgenetic but for some reason it caused my hormones to go crazy). Immediately after taking it, I started loosing my hair, my back became overrun with cystic acne and I started growing excess hair on my back. Up to then, I had never experience any kind of acne or imbalance in my system. I got off the pill, but my hair loss never stopped, my scalp started burning and my hair steadily thinned. Of course I went to the Dermatologist who suggested Rogaine, my doctor said I could start spiro (I wasn’t there yet), I read Geoffrey Redmonds book “The Hormonally Vulnerable Women“. At the time, I was trying to get pregnant, but I decided I would try to go back on the pill when the time came. Fast forward a few years later, after stopping breastfeeding, my hair shed started up again. I decided to go on Yaz this time and I have to say, a week later my hair loss stopped and had been stable for 6 months.

During the years that my hair had started to thin, I promised myself when I saved up the money I would go see an Endocrinologist who might be able to give me insight on my hair loss. I made an appointment with a respected Endo in Dallas and I was excited that he might be able to at least tell me why I was loosing my hair, although I suspect AA since my hairs are not coming back. He ran $2,000 worth of bloodwork and found nothing significant. My thyroid was a slightly elevated at 2.8 and I was a little anemic - my androgens were fine, probably because of the Yaz I was taking. He gave me a prescription for synthroid and spiro. Several days after I started taking synthroid my hair started falling out, several months later, it started heavily coming out and I was right back where I was four years earlier, panicked and very depressed. I went back three months after starting the synthroid and he ran $500 worth of more test to make sure he didn’t have me on too high a dose of synthroid ( I was only taking 50mg). My thyroid came back 1.7, everything seemed to be great. [click to continue...]

I got an email from Tracy regarding a post she found on another website about a woman writing about her success with Spironolactone, so I’m posting it here for all of you. Thanks Tracy for this great find!

Hey Y,

I read the new story on the front page on the website asking a question on the effectiveness of spiro. I came across this blog entry by someone on soulcysters.com which you might want to post:

I just want to post my SUCCESS STORY here regarding PCOS and hairloss. I know this is something that is so devastating to many of us PCOS women and seems to respond slowest to treatment, so here’s my story….

On December 4, 2003 I went to get highlights and my hairdresser told me I was “thinning” on top. I had no idea. My hair was always long and thick, my pride & joy. Now thinning? Huh??? Sure enough after examining it under bright lights, the crown showed signs of diffuse thinning… I was DEVASTATED. I had the good sense acknowledge that thinning hair on a woman is not NORMAL, and thus there must be an underlying medical condition with was causing the loss. I researched and researched until my fingers were raw, and everything kept coming back to me saying “PCOS unmasked by coming off the BCP” .

I went to many doctors and none could confirm my self-diagnosis. After 4 months, I had gone from “thinning” to downright “Balding”. My self-esteem hit rock bottom, and my weight ballooned by 30 lbs. I was devastated. I was having anxiety and depression which I have NEVER experienced before in my life, and it stemmed from my hairloss. Having great hair had always been my crutch if I was feeling too fat or too zitty, oh well, at least I had this really great hair, right???? Luckily my husband and mother intervened at this point, and to make a long story short, I got into an Endocrinologist who said PCOS right away and started me on aggressive treatment. That was March 29, 2004. [click to continue...]