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Just got diagnosed, is my life doomed?

Hi, everyone. I'm a 22 year old woman from India. My inner thighs have been dark ever since I can remember. I got facial acne when I was 11, which gradually spread to my chest, upper arm and back.

Recently, the acne has gotten better, mostly on its own. About a year ago, I started feeling bumps and lesions arising in my underarms, but due to the whole covid ordeal, I couldn't go to a doctor. Finally went to one today and she's scared the shit out of me. She kept telling me if it was her, she'd be afraid of wearing backless or sleeveless clothes and said I have hidradenitis. (She didn't mention the disease more than once and wrote a long ass prescription but said I should get laser hair removal ASAP in my underarms or they'll turn into sinus ducts) I came home and googled the condition and now I'm just so extremely scared. Is my life doomed now? For reference, this is what my underarms look like right now

  1. Hi, Jade! If you are interested in reading about my experience, an article I wrote about getting laser treatments was just published (in two parts). I really have tried nearly every treatment with the exception of very few like IV Remicade. My experience is that the earlier you get the right treatment, the better your chances. Here is the link to the first part of the article, and you'll be able to get to the second part of the article as well from there: https://hsdisease.com/living/unicorn-doctor

    1. thank you! Definitely thinking about exploring laser hair removal or IPL hair removal as a treatment... Thank you so much

  2. hello Jade. Welcome to the community & thanks so much for reaching out. 💜 My name is Rebecca & I also have HS. I was diagnosed much like yourself. I was given no information and I had to research the condition myself. It can be very scary & daunting. It’s totally normal to feel this way. I know it can be scary knowing there is no “cure”. As Cooper said, there’s lots of known treatments now that can help symptoms! Always lean on this community for support & I wish you all the best on your journey!!💜💜

    1. Thank you, Rebecca! After writing this post, I really fell into a hole and it's taken a while to dig out of it... I've tried anti biotics and Vitamin A, hasn't helped much... In my head, I keep thinking I can somehow still "clean" or "scrub" the boils and marks away and thinking about it still makes me cry... But I hope to find some strength in the community, thank you

  3. Hey Jade, firstly welcome to the community! I know you might be scared right now but you've found the best place to be. We have tons of friendly community members that can offer advice and great articles to check out to help quell your concerns.

    It may feel like a life sentence because there is no known cure, but there are an abundance of treatment options and lifestyle management strategies to try that can soothe your discomfort. I've personally never tried laser hair removal but there are some people who have to great success! I can't say whether it will stop the forming of the sinus tracts as that can just be the natural progression of the disease but it also doesn't happen to everyone so you might be in the clear! I'm sorry your doctor scared you.

    What prescription did you write for you? There may be people who have taken it here and can offer some insight on how it worked for them, how to avoid side effects, etc.

    We see you and we hear you. You're not alone here <3

    1. After writing this post, I really fell into a hole and it's taken a while to dig out of it... The doctor who I initially diagnosed me was affiliated to an expensive skin clinics which primarily deal in cosmetic procedures, so we decided to talk to a dermatologist we felt would be less 'profit' or 'cosmetic' oriented. Apart from the laser hair removal, he recommended more or less the same treatment, antibiotics followed by Vitamin A... I've not really seen much results, the boils come and go with atleast one bump being there consistently... I'm considering visiting a few more clinics and if hair removal is going to help at all, I think I will get the treatment... Chest and back I can still deal with, but the underarms boils can get quite painful
      I keep thinking I can somehow still "clean" or "scrub" the boils and marks away and thinking about it still makes me cry... But I hope to find some strength in the community, thank you

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