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  1. #1

    Smile Women's Hair Loss Project - My Story

    So how did I get here? I find myself asking myself that very same question on a daily basis. The year 1999 was the year that forever changed my life. My hair loss began after having stopped taking the birth control pill Loestrin FE. Later I found out that it is or at least was, an extremely high androgen index pill. Who knew? Certainly not me and certainly not my gynecologist who prescribed it to me.

    So the following months after I stopped the pill my hair began to shed and shed like crazy. It was all over the place and coming out what seemed to be by the handfuls. I tried to find answers online, but I found nothing. I went to so-called “hair experts” also known as dermatologists who aren’t any wiser than the other dermatologists, but just know how to capitalize on the vulnerability of women. They were of no help either. Blood work… within normal levels. I felt frustrated that I couldn’t point to it on a paper and say “ah ha that’s it, my estrogen is low” or “there it is, I need more iron.” There simply was no explanation. I should point out that I also saw very expensive “hair experts” who told me I wasn’t losing my hair. What? Like they would know better than me, I’ve only live in this body… umm forever. Of course if I revisited those same doctors today they wouldn’t be telling me that now. This certainly isn’t one of those instances where you want to be right and say “I told you so.”

    I resolved myself to the fact that it must be androgenetic alopecia (female pattern baldness) and as such treated it accordingly. I tried everything including Propecia, yep that’s right the pill thats only prescribed for men’s hair loss, I took. I also took it along with Minoxidil (Rogaine For Women) but neither one of those did anything for me other than leave me a greasy mess. Rogaine does work for some women, I just wasn’t one of the lucky ones. I was then told by a very respected dermatologist who treated women with hair loss, that women who have hair loss caused by stopping the pill sometimes do well by starting another low androgen index birth control pill such as Orthtricyclen. So I did that, going against what I swore I’d never take again, I restarted the pill, that in conjunction with aldactone, which is basically a blood pressure pill with anti-androgen properties. I had to try something. So we can fast forward to today. I will say that for most of that time leading up to the beginning of 2006 those treatments seemed to be helping. I continually lost hair but it always seemed like there was enough to get by. In 2006 I noticed a dramatic increase in shedding and it took off like crazy in 2007. The shedding I experience today on a continual basis is of the same magnitude as when I first stopped the pill, the difference is, back then I had a ton of hair, so there was some to spare. Today I don’t and it gets less and less by the day.

    It’s interesting what you get used to, what you can learn to accept and adapt to with time. I no longer have dreams of having the hair I once had before this started. I just want it to stop falling out and to perhaps reclaim a little of what has been lost this last year. That would still leave me with thin hair but it would be enough to get by.

    I feel stuck and trapped. I am stuck on taking Orthotricyclen, basically forever, because I can not chance stopping for fear of having an increase in the mass shedding I already am already experiencing. I am stuck taking 200mg of a blood pressure pill (aldactone), that can’t be healthy. But, I made those choices at the time to be proactive to give myself a chance to be able to live and enjoy life. Many times I’ve wondered the damage I may be doing to my body in the long term for taking these medications. And I wonder extra nowadays, because it seems that whatever benefits they served are no longer present. It is as if all at once the medications stopped working, only I’m stuck continuing to take them. It is a horrible feeling.

    So that is where I’m at today. I am stronger than I ever thought I could be dealing with this. I seem to get by just enough, but my thoughts are always with what is happening. I think about it 98% of the day. It consumes me, depresses me and has caused me to cry so much over the years that I’m almost positive if I had collected all the tears it would be enough to fill a giant size pool.

    I continue to believe that things will change, I find hope when it seems hope has abandoned me, and I pray things will get better.

    UPDATE: So I wrote this "about me hair loss story" in August of 2007 when I first launched The Women's Hair Loss Project. Of course the facts remain the same, but I wanted to note that since actually beginning to journal my life with hair loss and having the opportunity to interact with other women dealing with the same thing, I have healed tremendously, more than any time before. I have sort of come to terms that my hair *may* not be with me forever, but I also have seen that there are REALLY REALLY good hair replacement options for women. I have made some AMAZING friends though hair loss. Well who would have ever thought something good would actually come from something so crappy! I am more at peace with my hair loss because I feel that it has purpose now, that I have a purpose. Which is to help other women going through this very difficult disorder. I want to let women know they are not ALONE. I started losing my hair at 21. I know what it is like to feel like you are the only girl on earth this is happening to. I have dedicated every free moment I have had over the past year + to try and help women with hair loss any way I could.

    Ladies, please know you are not alone. I'm here to talk anytime.

  2. #2
    Bald and Beautiful AlopecianMuse's Avatar
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    Oct 2008
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    Thank you for sharing your story. You have been such a strong and beautiful presence, filled with care, wisdom and love for each and every woman that you come into contact with. I am so blessed by your tenderness and your warmth...thank you for all that you do to help all our Alopecian Sisters.

  3. #3

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    Thank you so much for that, it means a lot to me!

  4. #4
    Junior Member
    Join Date
    Jan 2010
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    Default DID you try transplant?

    I read with interest your saga. I was wondering if you considered surgery and if not, why not and if so, did you do it? I'm considering some type of transplant surgery.
    I also heard that laser treatment is being used but I didn't see anything in this webiste about that. What is your opinion?

    Abbeyrose

  5. #5
    Junior Member Katjie's Avatar
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    Cape Town
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    I wish I could get onto the WHLP but it doesn't let me complete my registration and no one is responding to my messages that I tried to send to the admin for help.

    To the poster before me: I have tried laser therapy. It is helpful but it isn't something you can rely on with certainty. It can produce good results if done regularly and done in conjunction with other treatments specific to your type of hair loss,

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