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...]

Hi everyone -

As I am sure everyone is already aware, the Internet can be such a wretched place for men and women who are searching for answers for their hair loss. When I started losing my hair 9 years ago, the online resource options were pretty slim, but what made it worse to me was that the available online forums seemed so depressing, confusing and darn right ugly at times. People fighting and no direction really sent me more into a downward spiral, of course so did everything else. :)  This is why I wrote a post last September 10th explaining my thoughts and opinions on online forums in general, and why I had chosen not to include one on this site. I have sort of softened up my opinions on online message boards since that time and understand now the value it can have for some individuals. I realize that if forums are cultivated in a respectful, professional and loving manner that they can be a huge value to people.

A new forum has recently been launched by the founder of The American Hair Loss Association. The forum titled Bald Truth Talk http://www.baldtruthtalk.com is aimed to create a safe platform for men and women to get real information and support without the confusing junk that often times infiltrates online message boards. To read an article about this new resource visit: http://www.thebaldtruth.com/news/baldtruthtalk-new-hair-loss-forum/

I am proud to be a part of this new online support message forum. I am already a member over there and will being doing my best to represent women with hair loss, and to share information and guidance the best I can. I want to make sure that women everywhere suffering with hair loss knows they are not alone. The only thing worse than losing your hair at 21 years old, is to be losing your hair AND thinking you are the only one. [click to continue...]

I wish this post would be something more uplifting, but that isn’t the way hair loss always works is it? I sit here during my ninth year of hair loss all puffy from the crying spree/ meltdown I’ve just endured. Why today, why now? For the most part I have really accepted my hair loss and the thinness of my hair. But I guess the pain, sadness and frustration still floats close to the surface even though I usually keep it under wraps pretty well.

So what the heck happened?

It’s been over a year since I’ve been in for my annual hair cut. My hair is way too long for the thinness that my hair currently has. I can’t go back to the salon, my hair is too thin and I would be way too self conscious. I previously confided my hair loss to my hair stylist and she was understanding and careful not to tug on my hair and also let me comb it out after it was wet. But that was over a year ago and I’m even too embarrassed to have her cut my hair in my home. On a previous visit she had told me she could do that for me, which I thought would be great, until now. Here I am, stuck, helpless and tired.

Who can just cut my hair? I need a stylist who has hair loss, who is sensitive to the issue and who lives in Los Angeles and who can come over to my house, OR a stylist who works for a salon that has private rooms. I was recommended a local place by a friend in the network (Thank you Lisa)  but it is a hair replacement salon, and I am afraid that after they get a gander at how thin my hair is that they will want to push me toward that direction of adding hair to my own,  and I’m not mentally ready for that yet. I just want a haircut, why can’t I get a haircut? [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

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

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/

Hi everyone, I just wanted to announce that we will be holding a women’s hair loss support chat next Wednesday July 9, 2008 at 6:30pm - 7:30pm  PST

The chat will be taking place in our network. To to sign up for the event go to: http://community.womenshairlossproject.com and login to your account, or sign up for an account if you haven’t already (it only takes a minute and it’s of course free). Once you are logged in, click on “Events” in the top navigation toolbar, and then click on “Browse Events.” You will see “Women’s Hair Loss Support Chat” listed there.  Click on the link to view the event and the women who will be attending, you can then click on “attend this event” to add yourself to the group of women already participating.

Join the Women’s Hair Loss Support Chat to learn, share, and lend support to another woman with hair loss. Hope to see you there!

So I got an email today from a friend I sort of have lost touch with over this last year. This is a person I never confided to about my hair loss and the more severe and less able to hide that my hair loss got, the more I distanced myself. I make up reasons why I can’t get together, work this or that… and she just emailed putting out an open invitation out there to meet up with her and another friend I lost touch with as well. I just burst out into tears and started crying uncontrollably. I cried because of how I must make others feel by avoiding their invitations for get togethers, I must seem like a flake. I cried for my inability to tell them “this is why.” I know they’d understand but I don’t want to be scrutinized I don’t really want any questions and I just prefer to hide and keep to myself. I cry for myself, for the torment that hair loss has caused me, and for any pain it has caused me to most likely cause others by my actions.

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...]