Sessa's Story

sessa555

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I always had thick, long, curly brown hair. Georgous. People would comment all the time on my hair, and it truly was my crowning glory and my best feature. I started BCP's when I was 18, and stayed on them for over 4 years. During those years I developed 'menstrual migraines' that were difficult to control, but not the end of the world. My junior year of college (3 years into the Pill) my mom commented that my hair was looking 'straggly.' I blew it off, since I had not noticed any profuse shedding. 6 months later she commented during a visit home from school that my hair must be falling out because it looked thin. That's when I started to really notice that it was looking a bit thinner, but I still wasn't concerned and passed it off as school stress (my hair still looked great at this point, so I didn't care). My mom kept telling me about her concern about my hair, so after year 4 of the pill I asked my Doctor about it and she said to go off the BCP since that must be what was causing it.

So I went off the pill, expecting my hair to return to 'normal.' Instead, 3 months later, my hair started falling out in handfuls. I went to my general Doctor who recommended me to derm #1. Derm #1 said it was Telogen Effluvium due to some tramatic even that had happened 3-6 months ago (though I insisted there were no such events!) and said that it was extremely rare for the BCP to cause such heavy shedding. He said it would finish shedding within a month or two and then grow back 3-5 months later, no worries. At that point I was pretty sad and scared about the shedding, but my hair was still okay looking and I could see the light at the end of the tunnel.

Fast forward 1 year. My hair did, in fact, stop shedding heavily after about 3 months of shedding hell. However, 1 year later and still no regrowth and it seemed that the normal hair loss hairs never grew back. So my hair had gotten thinner and thinner, and by the 1 year mark looked like hell. I stopped wearing it down because it was so thin on top, but still held out hope that it was just taking me longer than normal to grow my hair back.

Finally, half way through grad school, I decided to go to OHSU for a second opinion. Derm #2 did a scalp biopsy and general blood tests. He said that according to the biopsy I had Androgenetic Alopecia and to use rogaine. He also told me that I could try going to an endo to see if there were any hormonal issues contributing to my hairloss.

I was devestated, but went ahead and scheduled appointments for the best endo in town. I also found Dr. Roberts, a renowned hair specialist, online and made an appointment with her. The endo, who was highly recommended, looked at the general blood panel and basically told me that it was not my thyroid, so it must be Androgenetic Alopecia. Nicest man in the world, but he basically dismissed me after a brief meeting in his office (not even a clinical visit). So I waited for 5 months to see Dr. Roberts, and when I finally got in with her she was wonderful. She was extremely sympathetic, her office was cozy and her staff wonderful. Her diagnosis, however, was less positive. She looked at my hair under a microscope of some sort with different combs and white paper and promptly told me that I had Androgenetic Alopecia. She told me to try Rogain 5% and come back in 3 months.

I tried the Rogaine, but it made me shed so heavily that I got freaked out and stopped, which ultimately made the thinning even worse. In addition, it made my scalp so irritated that it looked like I had psoriosis. I tried the 2% with the same results. At this point, I had lost over 60% of my hair. I went in for my 3 month appointment and she gave me a prescription for spironolactone and recommended that I try Propecia if the spironolactone didn't work. She said that although there had not been any official trials of Propecia in women that didn't mean it would not work. I tried the spironolactone, but the side effects were awful. I could barely stay awake at work, and had to take naps when I got home each day. It also upset my stomach.

So now I'm 24 (1 1/2 into the post-BCP hairloss ordeal) and trying to decide whether or not I should try the Propecia. If any of you women have any person experience in using this drug, I would love to hear about it. I have been putting it off because I'm a little bit freaked out of using it since I havn't had kids yet (not that I'm planning any in the next year or two, but still...it's a lil scary when faced with the potential side effects of an untested drug!).

In the mean time, I have purchased a cute pony tail clip that makes my hair look pretty good when it's back, although you can still see some of my scalp when you look down on my head. It also makes it very easy to do my hair in the morning, since all I have to do is put it in a pony tail loop and clip the hairpiece over it!

I'm hoping for the day when I can afford to do Sequence hair blending because it looks and sounds like an amazing way to deal with thin hair. However, until they come to the west coast (or I win the lottery!) the cost is simply not in the cards. I also stress because I teach high school and therefore have a fairly unforgiving audience when it comes to my place of work. Luckily, my boyfriend is super understanding and supportive and wonderful and so are my close friends. But it still royally sucks.

I think that in the back of my mind I still have some little iota of hope that it will grow back on its own, which I know is totally unrealistic. *sigh* I go through stages of 'it's just hair' followed by stages of 'I look hideous.' Thanks to everyone here, it's truly great to hear what everyone has to say, and thanks for listening.

--Sessa
 
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HI, I have a dumb question. Can women use men's rogaine, I can't find 5% sold for women. Is there a difference?.

Thanks
Also did your derm mention if generic was O.K. to use?
 
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Hi Sessa!

Thanks for posting your story, and welcome aboard! :)

Your story is very similar to mine, hair loss with birth control, Androgenetic Alopecia diagnosis, etc.

As for the Rogaine, how long did you take it for? During the first couple of weeks/months, it is common for people to experience shedding.

I hated spironolactone too! I was bedridden from stomach pain while taking it. I too am looking for an alternative.

Where is this Dr. Roberts located in the West Coast?

As for Propecia, I know of one awesome gal who has taken it along with 5% Rogaine and gained a significant amount of hair back. She will be sending me her photos and story pretty soon, so stay tuned!

This is quite a frustrating thing to deal with, but you are doing the right thing by gathering as much information as you can and educating yourself.

Laura
 

Rozzy252

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Sessa,
my heart goes out to you...it seems like sooo many of us have to go through a long period of figuring out what is causing this hairloss?? For a while my derm thought for sure it was T.E...but low and behold it was Androgenetic Alopecia....its great that your B.F is very supportive...Lord knows...support goes a long way. I haven't heared of any females at my end that have tried Propecia...my suggestion is do your research carefully before making the decision. I hope somewhere there are trials of this drug going on with females. I don't know if I agree with your Dr. or not about the official trials. I tend to hope that she's basing the decision to suggest Propecia because she "heared or read that it worked" and not using your experience as a test subject. I tend to find a little relief when taking a medication in knowing the risks and benifits from research on the drug. Especially if its going to play with hormones. Endocrinology is soooo intricate and we all react differently when hormones are tampered with. If your Dr. is suggesting the Propecia with a good list of side effects and long term effects and it sounds good to you then go for it. I'll keep my fingers crossed for you and you'll have to keep us all posted on your progress.
 
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Dr. Roberts is in Portland, Oregon and she is wonderful. She has led many research studies on Androgenetic Alopecia in females, and is willing to try treatments that are off the beaten path. When she spoke with me about using propecia she told me that in her professional opinion there is no reason for it not to work on women as well as men and that the company that makes it markets it as 'for men only' to avoid any lawsuits over birth defects from women using the product. Apparently the makers of Accutane went through the same thing because of the extreme birth defects that go along with taking their drug. Soooooo...I'm seriously considering it right now. But she's worth the trip. It takes quite a while to get a new patient appointment with her, but once you're established with her it's easy to get appointments. And she actually cares and is sympathetic and spends time with her patients. She hasn't pressured me to try propecia...she has just put it out as an option that if I am willing to try it than she will prescribe it for me. I have heard of women in the UK that have had success with it.

*sigh* This all just sucks royally!

--Sess
 
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Don't risk your life with sth unproved- my personal recommen

Dear Sessa and all here,

Well, having read so many research articles and talking to many doctors here in my country, I found out that there is nothing else for AHA diagnosis only minoxidil (Regaine) and Nizoral shampoo 3X a week. Why don't you think about hair transplant surgery as that is considered the last resort and the result comes out pretty good. I'm the one who was going for that but my doctor said that I got AHA type all my whole head not only some part eg. frontal line but also at the back. The conclusion is I can't do anyhting, just waiting for the new technology to come out (sth like cloning hair follicles) but it does not seem to be happen in the near future.

Regarding all those drugs that you have to take internally, I don't want to recommend you to try as it is not worth if there is a side effect later. Think about it.

I really want all the scientists and doctors to pay more attention to our problems (hair fallen problems). It seems so unfair for me that every disease is cureable and there is always a way out. How about "Hair fallen" problems? Well, just keep us updated your conversation and suggestions from the doctor and could you please tell her that we really need help.

Most of us who is suffered from AHA or Telogen Effluvium or whatever are genius and we are much better in every way comparing to those with perfect hair. We should do something to make us feel better. I still don't have the right and positive answer for that as I'm in the state of making my mind up on what happened to me as well. Give me some times and I will be more strong and I will cheer you guys up! Hang on there with me!

Hope you all have a nice day :)
Happy Nappy
 
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