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…]
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…]
So I went to a new derm, who diagnosed me with telogen efluvium AND androgenetic alopecia, for which he is going to prescribe me Spiro (sorry can’t spell the full name) and Minoxidil, however I told him about my misfortune with taking Minoxidil previously and he said well then just take the Spiro, 50mg (IMO I need 200, because I have less than a fifth of my original hair left). I appreciate that there is already a lot of info in this site with regards to Spiro, but can anyone specifically answer me these questions please?
1. Providing that it helped at all, how long did it take before it started
to work?
2. How well did it work/is it working?
3. Were there any unpleasant side effects?
Thanks
Ame
*******************
Hi Ame,
I do take 200mg Aldactone (brand name for Spironolactone) so I can speak from my own experience having been taking it for about 8 years now. I think the easiest of the three questions for me to answer is the last one. The only side effect I noticed from taking the drug was that I seemed to get a little light headed, especially when I would stand up from a chair. The doctor told me that could be related to perhaps not enough sodium in my diet. Since Spironolactone is also a diuretic you do loose extra electrolytes since you go to the bathroom more frequently. I found that eating a pickle or sucking on a ketchup packet would instantly make me feel better. Actually as I am typing this I do remember being tired a lot as well, but taking in that extra sodium seemed to always do the trick and bring me back to life again. I speak in the past tense because I no longer experience any of these side effects and haven’t for many years. [click to continue…]
So I am starting to go through a bit of a shed once again. Still not terrible and much better than the last 2 years, but a shed none-the-less. Here is my lemon into lemonade update. As most everyone probably knows who has followed my story, I lowered my synthroid dosage awhile back since I felt it was contributing to my excessive shedding. The shedding slowed down dramatically and I’ve been trying to enjoy each day that I don’t see a gazillion hairs laying in the sink after a comb through.
It has been probably a couple weeks now where I’ve noticed my hair starting to shed more and more. But I’m still doing okay, why? Because the hairs that are shedding are full length, long and strong terminal hairs. This is such an improvement for me. In the midst of my most horrible shedding time, my hair would shed all different lengths of hairs, one inch long, two inch, four inch, six inch, 1/2 inch and some that even looked the size of arm hairs. That would depress me to no end because I felt my poor hairs were not getting even the slightest chance at a decent hair life cycle. They were exiting my scalp way too prematurely, so any new growth would just fall out. Shedding long hairs, while not pleasant either, means that my overall hair cycle is improving and stabilizing. I least that is how I have decided to interpret it! It keeps my mind healthy and strong, and allows me to continue on with my days. So whether it is true or not matters very little, all that matters is what my mind believes. 🙂
Be positive, be positive, be positive.
Also, just a reminder, tomorrow (Thursday April 10th) is our first women’s hair loss support chat meeting at 6:30pm – 7:30pm PST. If you are interested in joining us, sign up in advance for an account in the network. http://community.womenshairlossproject.com/
You’ll need to login to your account tomorrow at that time and click on the “Chat” link in the top navigation bar. Hope to see you there!
I’ve finally set up the time to have our first Women’s Hair Loss Support Chat. The date is Thursday April 10, 2008 at 6:30pm -7:30pm PST. I’m hoping that this time and date works out for the women who are interested in participating. I am very much looking forward to getting to chat and interact real time with the women of The Women’s Hair Loss Project so stop by to say hi! I will do my best to answer any hair loss questions you may have, and of course share with you my experience with various hair loss treatments.
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!
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. [click to continue…]
Yesterday I was talking to my mom on the phone and she was telling me about a little girl she saw at the store that reminded her of me as a kid. She said “the little girl had really really thick auburn hair, lots and lots of hair, very long and pretty.” She also reminded me how I used to lay my head on her lap and she would brush my long thick hair. *sigh* That is certainly a harmless comment, except I no longer have that super thick hair, and haven’t for quite sometime, so it still hurt me and brought me down ever so briefly. I used to have that insanely thick hair, even as a 3 year old my bangs were thicker than all of the hair I have today. Oddly enough at around age 3 I had red hair even though there are no red heads in my family. That color changed over the years, until I dyed it fire engine red when I was 18. I’m glad I did that and enjoyed my hair during the those years. Looking back at old pictures of my firey red hair, I feel sadness and loss, but I take a deep breath and say “that is then, this is now, moving forward.”
I’m a different person today because of my hair loss, I’m more understanding, compassionate, non judgmental and more patient. I’ve pondered the meaning of beauty and of strength. I’ve come to realize I can’t control everything, but what I can control is my outlook, and how I let “uncontrollable” things affect me. It’s a work in progress 🙂
