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View Full Version : Awake and sobbing again...(long-sorry!)


MiaFlores
12-08-2009, 11:15 AM
I'm new here, and first let me say that I appreciate seeing how wonderful and supportive you are of each other, and that there are other women who understand and I can be honest with. I think the worst part about my hair loss might be how alone and ashamed I feel to even be around friends and family right now. I just want to hide.

I’m 35 years old. I’ve never felt I was a beauty, but I was decent looking, and the one attractive feature I always had was nice hair. My hair has been waistlength to tailbone length, dark, shiny, nice texture…. Also, I’m of a cultural background where long, full hair is very much valued–expected really–for women (even more so than in American culture at large.)

I’d realized I had some very gradual thinning probably over the last 10-15 years, but nothing drastic. I’d been on the NuvaRing for several years without any big incident. Then, this summer, I tried to go off the NuvaRing. And all hell broke loose.

In three months time, I went from having a full, lovely head of hair and no major skin problems to incredbly awful cystic acne and my hair falling out by the handfuls. At first I thought it was just a temporary shed…but soon I noticed my hair was getting a LOT thinner. At this point, I have lost 1/3 - 1/2 the hair I had in June. In the last month (month 4) it’s reached the point where it’s become really hard to hide it. There is a patch at the top-back of my head that is so thin, it’s become hard to cover. The temples and sides of my head are also thin and hard to cover, and all over I can just see rivers of scalp when my hair separates or is put up/pulled aside.
It’s stunning how quickly and relentlessly this has happened!

My doc put me back on NuvaRing (there were other side effects from going off of it.) She said the hairloss should stop and hair start growing back. I’ve been back on it for a month. Other symptoms have started to slowly improve, but my hair continues to drop and I don’t see any signs of regrowth yet. I’ve started Nizoral (1%) about two weeks ago. I’m taking hair formula vitamins. I’ve had blood tests. My ferretin was 32 (normal, but low-ish end maybe?). B12 and the TSH4 also in normal range, DHEA-s 42. I have an appointment with a dermatologist next (soonest I could get--god I hope I still have hair....) But in the meantime, I’m so lost, and so desperate.

I am just devistated I don’t know what to do. I’ve reached the point where I’m afraid to go out of the house without a hat on. I cry (sob, really) over this every day, which makes me feel silly and cry more. I’m afraid to see friends and family. I feel ugly and ashamed all the time. And I worry about what the future will bring. (Will this hair loss stop? Can I grow enough of it–any of it–back and feel normal again? Will I be too unattractive to men to be loved and desired again? What about having children–will I have to choose between keeping my remaining strands or having a baby?) Some days, I almost feel like killing myself. I won’t, but I…just feel like I don’t want to live like this. http://www.womenshairlossproject.com/wp-includes/images/smilies/icon_sad.gif

It’s even affecting my work. During the day, I avoid office situations as much as possible because of harsh overhead lights. For my other job, I teach flamenco and I also perform (sing, dance) regularly. But now…I’m afraid to stand with my back to my students (are they staring at the balding spoton the back of my head? Will they still want to take these classes with me if they notice, or will they want to find someone else who meets the more glamorous image they have in mind?) And what about my performances? Am I going to lose gigs/not have guitarists, choreogs, and clients because I don’t have the look and the hair needed to pull it off? Up to now I’ve been hiding the loss with partial hair pieces and accessories, but I don’t know how much longer that will work if this doesn’t stop. Probably not more than a month. Plus…for certain types of performance, the fake hair is difficult–can’t be changed quickly between numbers, changes the feel of how I move, etc. ...And I rely on this for my income.

I’m also struggling with at what point do I need to (partially) give up and cut my (remaining) hair? And how short do I need to go? I know, it may sound silly and not especially rational, but the thought of surrendering and cutting my long hair hurts and depresses me terribly. (Again, the cultural thing, plus the prospect of just not looking like what I feel like/not looking like me.) I know even if I can regrow some hair (which is a big if, from what I can tell…) it would take years for the new hair to reach the length and texture of what remains…and even if I get to a more “normal” shed cycle, over time, that “old hair” will just fall out due to natural cycle…probably before new hair has grown in to the same length.
And that’s if it grows. http://www.womenshairlossproject.com/wp-includes/images/smilies/icon_sad.gif

In the meantime, I’m trying (unsuccessfully) not to think about it ALL the time…yet here I am at awake again in the middle of the night and on this site. I don’t know which I’ll lose more completely first–my hair or my mind. *sobbing*

Thank you all for listening, and thank you for sharing your stories. It is good to be able to “come out” to some people who might understand.

Lyric
12-08-2009, 05:21 PM
Hi Mia,

All of us here know exactly how you feel. I'm glad you joined up here. You're not alone.
I'm no doctor but it is my understanding that you need to have iron levels of at least 70 for hair re-growth. There are many women on here who have /have had problems with low iron . When it's low, it can cause hair to shed.
There is lots of information on these boards and lots of people here to help.
Come here often and post often. It helps.
Hugs and welcome.

Gloria
12-09-2009, 03:28 AM
Mia my prayers are with you................ I know exactly how you feel and what you are going through. Just this week I snipped my topper and my Gosh the next day it looked horrific when I got to work (it looked OK at home). I went into panic mode.......I have a mirror on my desk and I kept looking at it. I looked for a rubber band to pull it back but I could not find one. Finally I found one and put it back. I did not even want to talk or get up to get coffee. So yep I know how you feel. Last nite I cut it somemore and today it looked more decient.

Please remember God will not have us go through nothing we can not handle. I do not know what God is trying to show me except to be humble. God Bless you!!

Hair Worrier
12-30-2009, 07:18 PM
I love long hair, however after a year of shedding, with about half my hair gone, i have chopped if off so it is just about above my shoulders, hasn't made much difference tho as my hair still falls out all the time and of course the thin patches are still there. But it is easier to manage.

I'm so sick of it, i take 2 iron tablets n a multivitamen a day (doctor diagnosed me with low iron following blood tests) and try to eat healthy and mostly have tried not to let it get to me.....inevitably as the thinning as not ceased, it has become more on my mind, to the extent that i just want to wear a hat as much as possible and all i think about is disguisng my problem. I am very close to just throwing the towel in and dropping my "must fight on, it will be ok in the end" atitude and just getting a half wig next week when i have to go back to work and face the world....

That said....i advise u to fight on and do all u can to find u remedy.
Best of luck

MiaFlores
01-07-2010, 09:04 PM
Well here's an update...

Saw the dermatologist. She called it a combo of TE and AA. She keeps pushing the idea of Accutane (uhhh...but one of the nasty side effects of Accutane is hairloss and I was *very* clear that the hairloss bothers me a lot more than the acne--plus my skin gets dry veeeeery easily--so why in the h*** are we even talking accutane at ALL???) and she seems resistant to the idea of spiro.

She told me to wait two months to come back to see her. She put me on an antibiotic for my acne (which it now turns out I am allergic to, so I'm back off that) and after my blood work came back, she had her assistant call me to tell me to go on 5% Rogaine. Well....I'm really reluctant to do THAT because it's a lifetime thing, can't get pregnant (ok, same is true for spiro, but at least they can *try* to wean you off and see if it works), and also...I have long hair and I'm a performer and I have very sensitive skin. Howam I supposed to get this gunk into my hair 2x a day, and still be able to go about my life/activities? And what if my scalp reacts? Then I end up going through the Minoxidil dread shed for nothing! I mean, I can see turning to this as a last resort, but....

I tried to call back to see if I could get an appt to talk to her--ask my questions, let her know about the allergic reaction to the antibiotic, etc, but the soonest they could gt me an appt was 7 weeks out. That was three weeks ago.

I have an appt. in the next few days with my primary care physician. Going to try to talk to her about this. I'm just so devistated, I don't know what to do. I continue to shed excessively -- upwards of 150 hairs a day...I think it may have even INCREASED in the last few weeks. And I'm doing nothing! I feel like a frickin' sitting duck. I just don't understand how I could have lost soooooo much hair in less than 6 months if it's mostly AGA. But if it's TE, why isn't it growing back?

My man is trying to be patient, but it seems I'm always late to go anywhere because it takes me so long to either put on my wig or, even if I'm going to wear my hair up, cover my whole stupid head with toppik and weave in some kind of addition so the bun doesn't look soooo tiny that the next time anyone sees me with my hair down (wig), they instantly know it's fake.

...I'm also worried this may end up destroying our relationship. Not the hairloss itself, per se, but what it means for our ability to have kids. What if I'm in early perimenopause? And with the horrible symptoms I had when I went off BC (hairloss yes, but also crippling depression)...how smart is it to do that again? And then what about the estrogen crash after a baby is born if I DO get pregnant? Talk about scary post-partum depression.

God. I was feeling better about it for a little bit there--feeling like maybe I was getting taken seriously and maybe it would get better but...I just don't know what to do. I feel so old (I'm only 35) and ugly and frustrated.

Sorry to complain so much...I just...I just want the shedding to stop. I know, I know--so do we all. *sob*