Women’s Hair Loss Project

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...]

I would like to share with you a story written by a woman named Melba who has been with The Women’s Hair Loss Project since last October. Before I share her story, I’d like to talk a little about hair transplants and my thoughts on women being candidates for this procedure. I have written in the past that I am not particularly a fan of hair transplantation in women. The reason for this being the common diffuse pattern of hair loss prevalent among many women who experience thinning hair. I am not a physician and everything I write is simply my opinion based on my own hair loss and that of all the images I have seen published by the members of The Women’s Hair Loss Project Network, along with the many stories I have received from women who had less than favorable outcomes from hair restoration surgery.

In a hair transplant procedure a strip of hair is removed from the back of the head and the follicles are implanted into the thinning areas. For men this usually works out great because the area in the back of the head is usually DHT resistant, which is why even in the baldest male, he will usually maintain that rim of hair around the bottom portion of his scalp. In many women with female pattern hair loss, the hair falls from all over the scalp in a more diffuse pattern. I say pattern, but it is really a lack of pattern, it is just from here and there and everywhere. For myself I lose hair from the top, both sides and also the back of the head (top and bottom) and my hair has fallen this way for the last 9 years. So I know I make a very poor candidate for a hair transplant procedure since any hair moved could potentially just fall out the next day. Many of the 1400+ members of The Women’s Hair Loss Project Network have the same type of hair loss as myself, so it seems this is more the norm for female androgenetic alopecia than an occasional occurence.

Having said all that, I have to ask, how can a woman with diffuse female pattern hair loss be a candidate for surgical hair restoration? I simply cannot wrap my mind around that, yet there are some physicans who believe that hair transplantation is a viable option for women with this type of hair loss.  [click to continue...]

Mary discusses living with alopecia, and how attending a Bald Girls Do Lunch event dramatically changed her life. Read Mary’s full story here.

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...]

Dear Hair,

I am so mad at you, and hurt by you for what you have done to me. I sit here in my pajamas and robe, crying uncontrollably from your selfish desire to leave. Have you no consideration for me? For my life , for my sanity? For 21 years you deceived me, tricked me into a false sense of security thinking you would be with me for life. What did I ever do to you? Was it lack of appreciation?

Now for 9 years you let me try to do different things to win you back. I gave you all sorts of things…. I even prayed for you and meditated for you! And what do you do? You tease me. You stay for awhile then run away. Stay, then run away. Now you’ve almost taken all of your things and left. What am I left with? An emptiness and wonder for what I will do without you.

How did I ever depend on you so much? You logically seem so insignificant, yes I SAID it, insignificant! What do you do? You just sit there, waiting to be tended to and pampered. I have other things more precious than you. Health, Sight, Hearing, Legs, Arms, and Heart.  I know you’ve made up your mind already, and that there is nothing left I can give you to stay. So I guess I should work on moving on as well. But… if you want to stay, I’ll gladly take you back! So let me know at the next shampoo, k? 

Yours Truly,

Mind, Body, & Soul

Written by Mary

Hi everyone,

I’ve just joined and I want to share my alopecia journey with you. This may be longer than it’s supposed to be, but I hope my experiences will help someone. If you want to put a face and voice to this narrative, please check out my YouTube video entitled “Alternatives to wearing a wig”.

I had patchy alopecia for 7 years, beginning out of the blue in my late forties. The round spots were always confined to the back or sides of my head, and were easily hidden under my thick brown hair. The frequency of the spots increased in the last few years, but they always filled in after monthly cortisone injections. My daily routine was checking my scalp in the mirror for new spots and for the status of old ones, and applying cortisone cream. I always worried about the spots moving to places on my head that would show. But, after so many years, I also sort of figured I’d never lose all my hair. Wrong.

Exactly a year ago, my hair loss began to rapidly progress. New spots appeared on top where there had never been any; old ones enlarged to take up most of my scalp and merged with others. I obsessed about losing it all, and was often depressed and crying. By January 2008, I had as much bare scalp as I had hair, and the bald areas were too extensive for cortisone injections. We took some final photos the night before I shaved my head on January 30, 2008. I saved some pieces of my hair. The photo you see was taken right after my head was shaved, and still shows stubble and my real eyebrows and lashes. I have no eye makeup on in this photo; my eyes were dark and my eyebrows very distinctive.

I felt better immediately! No more scooping up hair from the floor every day. No more examining my head to check the bald areas. No more crying over the spreading bald spots. And, it was much more comfortable under a wig or scarf than when I had the patches of hair. Shaving it all off gave me a feeling of control.

Via a local support group, I heard about a casting call for “Shear Genius” on Bravo, and was one of 8 bald women with alopecia featured on an episode that was filmed the end of March. At the taping, I still had my eyebrows and lashes, but they were gone by mid-April. The show aired July 23, and many times after that. (You can see the whole episode on YouTube under “Shear Genius 2 Episode 5″.) It was a great experience meeting the other women, all of whom had been bald for many years. I’ll probably never wear the wig from the show - way too heavy and thick, and I picked a color that wasn’t a good choice. [click to continue...]

As I was surfing the net this morning I came across this little, almost obscure article. Of course, since it had to do with hair loss, I clicked it, and to my amazement (although I shouldn’t be surprised) here I am reading about the Hepatitis B vaccine and HAIR LOSS!

I am posting the links below to the articles that I read this morning so you can go check them out. It pisses me off that hair loss is NOT one of the side effects that they warn about when giving people the vaccine. Studies are being done about the psychological effects of hair loss and women and yet no one thinks that announcing that it does in some cases cause hair loss would be important for US to know?

Have any of you ladies been vaccinated? Now the reports that I have read predominately talk about the Hepatitis B vaccine, but can we be sure that this is the ONLY vaccine that causes hair loss? How about the flu vaccine? or the one for pneumonia? How about HPV?

Can some of you ladies put my fears to rest? LOL I am so traumatized by this, that I can’t even write properly about it! Can you lovely ladies each tell me when you first started noticing your hair loss and if it coincides with ANY type of vaccination you may have received within that year? I am really curious and mortified at the implications of this!

How many college students were required to get vaccinated and THEN started to notice that their hair was falling out and thought it was just STRESS!

How many women were entering the nursing or medical profession and started losing their hair around the time of the required vaccinations?

How many teachers are out there, that are required by law as well to be vaccinated before they begin teaching? [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...]