How do you cope with alopecia on a daily basis?

[mimosa]

I'm going through a rough patch with this. I've been shedding more, or at least, I've been noticing more hairs falling (probably because my hair is longer nowm I don't know, but I noticed less shedding when it was shorter). Or maybe it's seasonal (it's fall down here). Who knows. All I know is my alopecia is probably genetic. I haven't been diagnosed, but it's only logical, since there's a history of alopecia from both sides of my family, my dad has hair loss (though not severe) and my mom has really thin hair. My sister also has alopecia, but hers is a bit more severe than mine, probably 'cause she's a bit older than me and also because she has PCOS. I don't have PCOS, but I do have insulin resistance, and I recently learned that it can also cause hair loss, but I doubt it's that. My thyroid is fine, too, no anemia, nothing. It's probably genetic. I know many women with PCOS + insulin resistance + hypothhyroidism who have full heads of hair... actually I think aside from my sister, mom and some older women, I don't know any other women with alopecia, especially not my age (I'm 23).

It's not too bad that you can see bald spots (I have one small bald spot, but that's due to scarring), but my part is wide and I have little volume, my hair is also very fine (if it's longer than shoulder lenght it tangles just by looking at it, it's awful, I get mini dreadlocks everyday when I wake up!). Anyway, it's not THAT bad, but it still gets to me... especially finding stray hairs all day! I hate showering, I hate combing... I can't style it or anything 'cause then some scalp shows. And even though I get compliments often because it's shiny, soft and generally healthy looking, sometimes, some people make stupid comments like: "Wow, your hair is so thin!! Your ponytail is thinner than my thumb!" or "You must save a lot of money on shampoo", "Your part is very wide", "You have very little hair", etc. Why do people think it's ok to make such comments? I find it's akin to making fun of a fat person, or someone with glasses... it's rude and insensitive, and it's not something they can control, it's genetic! My hair oss is genetic, I'm not a freak.

But that's the thing, since people think only men lose their hair, they make me feel like a freak. I feel so ashamed, that's why I avoid getting haircuts. I went to a dermatologist, and he was so insensitive, he just looked at my hair and said "Yep, you're balding" and that was it... of course for a man in his 60s with a full head of hair I guess it's not a serious issue. He couldn't even cure my seborrheic dandruff (by the way, so far neither coal tar nor ketoconazole have solved the problem, any other ideas? Head and Shoulders did nothing either). And there are no other derms in my area, and that was such a discouraging visit... I was almost in tears and that was all he could say, he didn't even recommend minox.

I'm not on any treatment... I'm afraid minox won't work, and I'm also afraid the initial shed will leave me with nothing. I'm too young for spiro I guess... and well, doctors here are so incompetent, they're worse than American doctors (from what I've read). Wigs are too expensive and I want my real hair... at least I don't ever remember having thick hair, so I'm used to not having much... but looking at pictures from when I was younger (just starting puberty, for example) while my hair didn't seem that much thicker, I had a normal, tight part. When I was a kid, I seemed to have normal hair, not much, but normal (my sister on the other hand did seem to have a lot of hair, though maybe it's because she's curly). My mom has constantly told me I've always had thin hair, but I guess it looked normal.

I don't know what to do, this is so stressful... right now, I'm sad about it. Until a while ago, I was fine and didn't stress about it. Now I'm constantly worrying, I wish I could just shave it all off, but then I'd be immediately labeled an outcast. It also terrifies me that guys won't want me... not even bald guys who could be more understanding. My ex had a full head of hair so he didn't get why it was such a problem for me, he said I looked fine and that I was practically imagining it, but I don't know. I have an ok face and an ok body, I just worry that my lack of hair trumps all.

So how can I cope with all these emotions? Sorry this was so long, I just feel too many things and I also feel hopeless because doctors here don't even know much about MPB, so female alopecia is something they practically dont know exists.

[Tracy C]

So how can I cope with all these emotions? Sorry this was so long, I just feel too many things and I also feel hopeless because doctors here don't even know much about MPB, so female alopecia is something they practically dont know exists.

Hi Mimosa,

The best you can do for yourself is to start doing something about it - however small or what little you can do, just start doing something about it.

If your current shampoo and conditioner has sulfates in them, switch to sulfate free shampoo and conditioner. Even though you feel Ketoconazole shampoo wasn't helping you, use it once a week anyway - but not more than once a week.

When I first started treating my androgentic alopecia, I started with the laser comb. Nothing more, just my laser comb. After that first six months, my hair did improve noticably. After that I started using Minoxidil along with my laser comb. Six months later I saw even more improvement and hair was definitely growing back. After 18 months of treating my hair loss on my own, I went to see a specialist and he added another medication. Other medications may not be right for you. If you cannot find a doctor who will take your problem seriously, I don't know what to say accept to keep looking till you do find one.

If I had to start it all over again knowing what I know now but did not have access to a specialist, I would definitely start using Ketoconazole shampoo once a week right away. I would definitely start using sulfate free shampoo and conditioner for my regular washing right away. I would start being extraordinarily careful with my hair when I am washing, drying, detangeling and styling. I would definitely get a laser comb and use it every other day. I would definitely use Rogaine every day - but I would taper up to the full twice a day dose slowly over time.

I want to explain what I mean by "taper up". Start with women's 2% generic liquid Minoxidil once a day every other day about two hours before your bed time. After a few weeks of that, start using it once a day every day for a few weeks. After that, start alternating between once a day and twice a day for a few weeks. After that, use it twice a day every day. After a few weeks of that, consider using men's Rogaine foam for your morning dose - but continue using the women's 2% strength for your evening dose. If you decide to stop using Minoxdiil, tapper off of it the same way in reverse. The purpose of tapering on and off the medicine is to try to reduce the shedding as much as possible.

You need to be aware that treating androgenetic alopecia is a painfully slow process - but it can be treated, it just takes a long time. There is nothing quick about it at all - and if your problem truly is hereditary, you need to continue treating the problem for the rest of your life. There is no getting away from that commitment. At least for now. That may change in the future. But for now that is the way it is.

There is something you can do - and this is something you can do. I would suggest that you continue searching for a doctor who will take your problem seriously as well. He or she may be very difficult to find though.

I am sorry for the long post. I honestly feel this will help you.

Take care,

Tracy

[mimosa]

Thank you, Tracy. That was very helpful, and it gives me the much needed hope.