Women’s Hair Loss Project

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. (more…)

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I am 51 years old and dealing with hair loss since I was 19. I am an identical twin, and we both experienced hair loss at the same time in our lives, which seems to support the hereditary link. There were and are no other relatives that we know about who experienced this. After 31 years of dealing with this issue, there have been many cruel and insensitive comments. I remember every one. I think every boyfriend I ever had has asked at one time about my hair loss and some asked in a cruel manner. I was recently married and the day after my wedding an old friend visited for a post wedding celebration. I hadn’t seen her for a long time (mind you she is a grown woman). She sat in my kitchen, in a roomful of people and described running into an old, longtime forgotten mutual friend. She told this woman that she was going to be traveling to my wedding and “of course you remember Debbie, you know, the woman with the really thin hair”. Then she said, “I told her how could you forget Debbie, I mean, she has the thinnest hair I have ever seen!” This she said in my kitchen, in front of my new husband, other guests and the day after my wedding!!!! I was appalled, sad, ashamed, etc. Thankfully others were not listening intently, engaged in their own conversations, but nevertheless, the words hung there for eternity for me.

There is a woman in my neighborhood that I avoid, because she gazes absently above my forehead when I am speaking to her (my loss is due to male pattern baldness). She doesn’t look in my eyes when I speak. I don’t know if she does this absently or on purpose.

Going to the hair stylist is always stressful, especially if the chair I am sitting is not private enough. Usually the stylists are empathetic and they tell me that they see hair loss often. It’s the other customers who absently gaze at my head while they themselves are being serviced. I have left good stylists just because their salons do not offer privacy.

My aging mother who has never had this problem, is now losing her hair to the aging process. She still has more hair that my sister and I. Her comment? “I am devastated. My hair is beginning to look like you girls (meaning my sister and I).

There have been so many other words that hurt. I have a beautiful 18 year old daughter who has not experienced this kind of hair loss yet and I am worried about her. I don’t want her to suffer as I have and my sister. She is on the pill for lack of a period (Nortrel, which I have never seen mentioned here). So far, no hair loss thankfully. (more…)

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Just to reiterate what many other women have said, this website is a wonderful and empowering resource. Here’s my story:

I noticed a lot of hair in my tent while camping for 5 days last summer. At the time, I was not on birth control although I’ve been on and off it for 11 years (I’m 27). I got on Apri shortly after for its intended purpose and didn’t notice any change with the hair loss. I didn’t really think much of it until it didn’t stop. I freaked out while on the phone with my mom around Thanksgiving (my family all lives in Connecticut; I moved to Seattle about 2 years ago for my job). I went to my general practitioner and she basically told me, “See a dermatologist, and if its happening there’s not much you can do”. When I saw my family at Christmas they said I looked the same and I shouldn’t be so freaked out; everybody loses hair.

Let me tell you about my hair on a good day: I’ve always had baby-fine hair! I was bald until I was 2 and have never had long or thick hair. My mom and her sister have fine hair too. I’ve always gotten good cuts and color. My dad is balding; he’s 52…but I feel like many, many guys are balding. My uncles are mostly bald but no women in my family are. I can accept thin hair, that’s what I’m used to. It’s just excruciating to lose what already few hairs I have. I don’t have hair to spare!

The dermatologist I visited got an abnormal hair pull and diagnosed me with Telogen Effluvium. He essentially said, use Rogaine, eat an iron supplement and grin and bare it. All my blood work came back fine (whatever that means). I felt relieved for a few days but then decided that I was underwhelmed with his diagnosis and I couldn’t just sit here shedding hair all over the place, so I made an appointment with a female derm to get a second opinion. It’d been going on for 5 months. Believe me I wracked my brain trying to figure out what it could be. I had no major trauma or dietary change. I eat pretty well, exercise, etc. The female dermatologist was a bit more sensitive and her hair pull test was “normal”. She inspected my scalp and said it looks healthy and there is no scarring. She told me the shedding was probably just my body readjusting to the change in bcp (although I’ve gone off and on before and have never had a noticeable problem).

The weird thing is, two girlfriends I met when I moved here had hair loss issues. They both moved abroad last summer and when I emailed them asking about it, they also said, You’re fine, it’s hereditary or stress related. They’d laugh you out of the hair loss clinic. Try Rogaine. Two hair stylists I went to said they couldn’t believe how many women were approaching them with hair loss issues. It makes me wonder if it isn’t something environmental. (more…)

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The Women’s Hair Loss Project is looking for creative, passionate and knowledgeable volunteer hair loss writers to write original articles for our blog. You must have a good command of the English language and be able to effectively communicate your thoughts through words. You don’t have to be a professional writer by any means, just need to be passionate and with a desire to help other women and write articles that other female hair loss sufferers can relate to and learn from.

The hair loss world is much bigger than my thoughts and views and I am looking to provide women with a greater hair loss perspective outside of my own. I’ve seen the blog writings of many women in our network and realize that so many others have so much to contribute. I’ve already reposted a couple of writings written by Dottie and Kathyloulu, members of the Women’s Hair Loss Project Network.

What Type of Articles Are You Looking For?

Pretty much anything that would be of value to another woman going through hair loss. Some example topics of interest could be:

Tips and suggestions for coping and dealing with hair loss

Thyroid and hair loss

How to emotionally deal with hair loss.

Making the decision to wear hair

Adjusting to wearing hair ( If you are a hair wearer you definitely have something to contribute here)

How to find a reputable hair loss replacement provider

Hair loss treatments (the real ones only used by medical professionals) Rogaine, Aldactone (spironolactone) and oral contraceptives. Vitamins and nutritional supplements are good too expand upon.

Help finding the right doctor.

How to avoid getting scammed by the online hair loss predators

PCOS and hair loss

Hair loss news commentary

Etc Etc. The list could go on forever.

By opening the blog up to other writers I am probably going to get a swarm of people interested in only writing a fluff article to embed a million links back to their own site. So here our my over protective rules.

Guidelines and Rules

Since I am looking for only sincere people I have to get a bit creative. All articles written will contain the author credit at the top and bottom of the article. (more…)

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Before I share my story, I would like to thank this site for opening the door to a world of hope, understanding, and amazing strength. You are truly a remarkable young lady with a tremendously huge heart. Your words and intellectual spirit speak volumes about the very fibers of your being. Having this site, is a delight…… for sometimes, we have all been in a very dark and desperate place. Again, Thank You So Much!!!!!

I thought it was time to share some inspiration and background to my hair loss experience. I will tell you at times…. There where moments when I didn’t want to see the light from the sun, peer through my windows. The very thought of getting out of bed was a chore, a dreaded routine that was both exhausting and draining. At the age of 45 I have suffered with hair loss for well over 20 years. At first … it wasn’t that noticeable, after all, I was younger and had a busy schedule. Although it reared its ugly head I can honestly tell you I really didn’t put it all together until some 10 years later.

It was a slow process and more then likely I just ignored the signs… Back then I saw several doctors, truthfully… If I may be honest…. THEY SUCKED! The only thing they made sure of was my insurance numbers and mailing address were correct. Years of doctors and empty pockets, I realized that the traditional medical society for the most part reminded me of lawyers… They prey on your hardships and suck you dry! Years ago, doctors cared about following there passions in helping cure the sickly awhile tending to the needy with compassion and love. Today, while I am sure there’s a handful….. It is a commodity at best! I can tell you that worrying and obsessing over those things you cannot control only fuels the aging process as well as any illnesses you may have, The mind and body connection is real, and once you work with your body and not against it you will begin to see some beautiful things happen. (more…)

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I finally decided that I would go see Dr. Roberts, a dermatologist in Portland, Or. She specializes in hair loss for women. I Just wanted to make sure that there were no real issues. I was hoping that it was all in my head. You see, I have always had extra thick curly hair. Stylists would tell me how lucky I was to have such thick curly hair. I would always say, “I wish I had straight hair”. Anyway- I decided that the shedding was not normal and the thinning didn’t seem normal. So, I decided I would go get checked out. I got checked once before and that was/is a bad memory and did not want to go through that again. I was 9 months pregnant and a Kaiser dermatologist said “You have Male Pattern Baldness disorder and it is hereditary”. He just looked at me and not anything else, no special scope was used or hair strand tested. I was in his office for 10 min. I went home and cried. I told my OBGYN at my next appointment and she said it was from the hormones and since I was about to have a baby that this sometimes happens and I should expect my old hair back. I did accepted it and then my hair was fine again (my hair did go straight while I was pregnant). Well that was in 2001. Now it is happening again and I had my last and final son in 2003.

So, 2 years ago I noticed my hair starting to shed again or thin a bit. I was kinda glad that my extra thick hair decided to become a little less thick and much more manageble. Then it kept thinning and I thought. ” Hmmm- what if this doesn’t stop?” Then I thought that everything would be fine and not to think about it. Then this past summer it started to shed and just thin and my scalp itched. I didn’t want to think about it. Except for I did think about it, every time I had to try to style my hair or get ready to go meet a client or go meet with consultants.

Oh no- it was now much harder and harder to style my hair like I usually do. Oh S–t! What am I going to do if this does not stop? I thought, I am not my hair. I am not my hair …I am more. (more…)

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I guess I started noticing my hair loss after the birth of my daughter, 21 yrs ago. I have always had fine beautiful naturally golden blonde hair. But, when it started thinning, I resorted to perms. Most of the time I just looked fuzzy..Then I pulled it all back in a pony tail and clipped it up in the back… that seemed to be the last way I remember wearing it. before I made the LEAP..and it was a big one into hair systems. I guess it took me about 8 yrs to get to this point where I felt complete desperation.My hairdresser and long time friend, talked me into going to a salon out of town where she had heard about this guy who did hair weaves. I finally got brave enough to go. After his ‘thourough’ examination of my hair, he told me what I was not prepared to hear. The only thing that I could do at this point in my hair loss was to go to a track and glue hair system. He said it would be no big deal, just cut my hair a little bit in this track around the top of my head, then adhere the piece to it. No biggie…I told him I’d have to think about it for a while. I remember crying and crying over the fact that it was my only option, I had to do something… I felt as if this were some sort of social death sentence.So, I went back to his salon where, by the way, he did his hairpiece business upstairs away from his other clients. This I was happy with. I had had enough stares and rude comments from co-workers and even some family members to last a lifetime. I was ready for the humiliations I had suffered to stop. Well, he begins to cut my hair on top, then without warning begins to shave the entire top of my head. I was in shock and began crying …”what are you doing?” He said this is what he had explained to me the week before. I’m telling you…I don’t remember ever hearing about the shaving the head part. But at that point, it was too late…there was no turning back. He then proceeded to place on my head the most horrible thing I’d ever seen in my entire life…It was ashey grey in color..not even blonde. The hair was so thick you could barely get your hands through it. I sobbed and sobbed in that chair as he tried to thin it out and give me a totally different hair style than I was wearing before. He said “no one will even notice, they’ll think you’ve just got a new hairstyle”. He cut it in a “Florence Henderson” style (from the Brady Bunch)…said it would look more natural that way. Well it looked anything but natural, it looked like a little old ladies wig. I was completely devastated…I did not leave my house the entire weekend. But, I had to return to work on Monday and I dreaded it like nothing I’d ever dreaded before. (more…)

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Hello Everyone. I am so happy to know that I am not alone in my hair loss devastation. I am a 28 year old mother of four. I’ve been experiencing heavy hair loss and extreme changes in the texture of my hair since the pregnancy with my daughter 5 years ago. Much to my dismay, my doctors were telling me that I was pulling my hair back too often or that my hormones just needed to get back to normal or that the straightening process I had done had caused the loss. So for five years I have watched my very thick, very curly hair become thin and straight thinking that one day it would magically reappear. It was two weeks ago that I had a scalp biopsy and was diagnosed with andogenetic alopecia. To boot, I am losing it from all over my head, not just the top. My dermatologist is pretty cruel and just chuckled and said “There’s nothing you can really do. Use Rogaine.” I am devastated. My daughter has hair just like mine used to be and I’m actually jealous of her. I’m debating whether to have the fifth child that my husband and I wanted but I don’t want to spark any excess shedding episodes. I have started Rogaine as it is the only FDA approved medication for women but I am feeling very lightheaded and somewhat dizzy so I’ll probably have to stop. I realize like many of you that this has quickly become an obsession. I know that I am not my hair. But let me tell you, after four children, my body is beat. My hair is the only attribute I have left and I’m losing that now too. I’m at an incredible loss. I can’t imagine what it will look like when I’m 40. Please give me any feedback you can and I hope this post helps someone feel not so alone as this site has helped me tremendously.
Thank you,
Amber

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Dear Amber,

You are not alone in your feelings and struggles. I wish I knew why most doctors are so insensitive and callus toward the women who seek out help for their hair loss. I can’t explain why they do it, but it is an unfortunate very common occurrence. Was your dermatologist by any chance a man? They seem to be the least understanding.Just like the birth control pills can somethings kick in the onset of androgenetic alopecia early so can the hormone shift of having children, sometimes there is just no rhyme or reason, but undoubtedly we are never prepared. There are other “treatments” used to treat women’s hair loss such as low androgen index birth control pills and aldactone (spironolactone). All hair loss treatments carry the risk of possibly igniting some extra shedding at first. It’s the whole, “has to get worse better it gets better type thing.” It’s all a very personal decision what a woman chooses to use to treat herself, and she has to fully understand the postives vs. the negatives. Hopefully in time there will be more studies done to figure out what exactly causes women’s hair loss and then with any luck a real solution for women’s hair loss will follow. (more…)

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The title may seem to be surprising.. but, actually, when analyzed accurately.. it is not. I have been an AGA sufferer for a few years now. and I AM SICK OF THIS SITUACION. What I want now is only “to have this situation solved one way or another. Either grow back or fall out completely. So that I can resolve it and move forward.” Based on my prior experience I know that grow back is impossible. You may say I gave up. Yes, I did. Because there is no point trying to fight with anenemy you don’t understand and one you are blind and deaf against. You will only go through better and worse times, being moody so that people around will not stand you anymore. Curing uncurable puts you in a perpetual state of false hope. You neither have decent hair nor a good replacement; You’re betwixt and between.I have had enough. Finished medical treatment and wait for so little hair to shave it off. Be beautiful for myself when totally bald. I can accept it. And being beautiful to people around who have no idea, when wearing the best available vacuum wig. Just hard times for me when the final hair loss comes. Wish me strength. I hope I manage.”I am literally a shell of my old self and I am quite frightened. Sometimes I just want to shave my head and get a full best quality undetectable wig so I don’t have to see anymore hair in the shower drain, sink, bathroom floor, back of my shirt, etc. I don’t want to have a partial replacement system on a clip, as it is just inconvenient.I don’t want to have a partial replacement system based on adhesives as I would never accept my looks with severe typical men’s baldness. I want to shave my head and become beautiful again. And I will.Nobody can understand me. But I do not care. This is only my life and my best times (I am 24)

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Dear Gosia,

Thank you so much for writing your story. Your thoughts are my thoughts. Your feelings are my feelings. On more occasions than I can count I have wished for there to be some finality to this never ending hair loss nightmare. Some closure…anything. I’ve felt the torture, the decline and slow death of my self esteem tear away minute by minute, day by day and year after year. You reach a point where you throw your hands up in the air and say “if I’m going to be bald then fine let it happen all now and let me get on with my life, because this strand by strand thing is eating me alive.” (more…)

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At 41, I gave my hairdresser free reign. She cut off everything but 1 inch of outgrowth in my natural color - grey. Under the lights in the salon, my scalp glowed just as brightly, but the white hair complimented the pink shine much better than the chestnut stained trimmings that covered the floor around the chair. There is no question in my mind that facing my reality - infertile, grey and balding at 41 - saved my mental health, and contributed to the end of my marriage. The disappointment in my husband’s face that day when I returned home from the beauty salon, showed me he could never accept me for who I was now, instead of wishing for the woman he’d met 15 years earlier. I knew that living with the truth was the only way for me, and that I would be doing it alone.

When my hair began to shed at age 31, I had thought nothing of it. It was so thick and wavy, I hardly noticed a difference, and simply passed it off as a slight change. By the time I looked in the bathroom mirror and realized the shiny spot on the top of my head was my scalp, it was too late. The Prempro I had been taking to mitigate the symptoms of premature ovarian failure certainly contributed to the loss, but because of the hormone changes from the POS, likely there would have been hair loss if I had not taken any hormones.

After denying the reality for a decade, mainly with new hairstyles and hair color, I couldn’t live any longer pretending to myself that nothing had changed. With barely an inch of outgrowth, I didn’t care if I looked bald when my stylist was done with me - I just wanted to have myself to look at in the mirror - whatever I actually looked like.

The divorce took 2 years - one year to finally say it, and one year to separate our lives and finances. (more…)

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