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I just got diagnosed.

Posted , 3 users are following.

napoyheadedgirl
napoyheadedgirl

I have been living with HS since I was about 13-14 (I am now 23).

I never knew what was causing these painful boils under my belly and between my thighs, eventually spreading to my armpits. I've asked numerous doctors what was wrong with me. Am I not cleaning well enough? Is it caused from sweating? I was told by one doctor that it's just cystic acne and not to worry about it. Another said it's just clogged pores. (Technically sorry that they couldn't do anything about it.)

Other doctors just didn't know.

Until yesterday. while getting my annual, my doctor saw them on my under belly first and asked if I knew what it was. Not knowing anything about HS, I of course said no.

Then there it was, an answer.

I have seen others saying that they get remission periods, I have never had one. Unfortunately it has spread to the back of my neck and behind my ears.

I'm so happy to have an answer about what is going on in my body.

I've have done so much research in the last 12 hours.

Mine doesn't seem to be hormone, food or any other form that I have read, they're just there all the time. I do however have flare ups, where theyre all over the place and get to the size of golf balls at times.

I am almost in tears at the fact that I have an answer to what this is.

I am so glad I found a support group where others know what I am going through.

I'm looking forward to hearing from others about their journeys with this disease.

0 likes, 5 replies

5 Replies

  • hypercat
    hypercat napoyheadedgirl

    Posted

    Hi I am nearly in tears reading your post as I do really feel for you.  I have had a few the size of golfballs but not that many fortunately.  

    Unfortunately yours has already spread which is usually the case by the time we  are diagnosed,  mine have too.   What you need to do is demand to see a dermatologist as they are the experts in HS.  They can explain treatment options but there are not as many since it has spread.  

    My dermatologist told me they don't know the cause (it is a very underfunded and little known disease),  but a lot of sufferers are smokers and/or overweight.   Not all though.   One of my triggers is stress but how you avoid that I don't know.

    I take antibiotics as soon  as I have a flare up which does seem to help.  When I have recurring ones in the same place the only option is to have them incised by a surgeon.  This has stopped those ones coming back,  but not new ones I'm afraid.   

    It's often trail and error what works for you but the dermatologist did mention rouccatine which is strong but can help.   Get your appointment with the dermatologist asap as they are the experts.

    I understand completely how you feel about finding a group like this coz I felt the same sense of relief to meet others with this awful disease. 

    Bev x

    • napoyheadedgirl
      napoyheadedgirl hypercat

      Posted

      My doctor gave me a referral for a derm as soon as she saw them. I'm always in a flare up and always in constant pain from the ones under my belly. I've actually had to go to the hospital for one I had in the crease of my leg and outer labia. The doctor told me it was so deep that he had half of his pinky inside of it. I was bed bound and on vikodin for 4-5 days.

      I've had to almost go through this excurtiating procedure so many times. I'm terrified to go through to it again.

      it's shocking that this only effects 1-3% of the world population. But at the same time, it's not that shocking considering I know absolutely no body with this problem.

      I'm honestly afraid of taking the anti biotics because of the damages they can cause. I'm considering asking about a steroid cream. I'm almost to the point of going through the pain for a skin graft.

      I'm glad to have a support system and real people that understand exactly how it feels to be in the physical and emotional pain. The embarrassment is the second hardest part of this whole journey.

      What I'd give to wear a cute pair of shorts..

  • khloee
    khloee napoyheadedgirl

    Posted

    Hi, I feel so sorry for u! I've just literally posted 're surgery! I was meant to get big skin grafts done which would have been taken from my leg, when the surgeon was explaining how this was done, I wanted to run the hell out of that ward, trust me it not sounding good!

    Unfortunately I have no decent recommendations on how to cure this for you but I wish now that as soon as I was diagnosed, I had demanded more and better treatment than typical antibiotics which didn't work for me personally. If you are unhappy with any recommendations made, speak up before it gets worse!!!

    I think most of the problems are because there hasn't been enough research yet.

    I really hope u get well soon

    • napoyheadedgirl
      napoyheadedgirl khloee

      Posted

      I've taken anti biotics before for other reasons and I never noticed a change.

      I'm allergic to any type of penicillin anti b So it might be pretty difficult to find one.

      I'm really hoping a steroid cream will give me at least a little bit of relief.

      If not, I'm considering the surgery.

      I just want some type of relief..

      I appreciate the feedback and support I'm getting.

    • hypercat
      hypercat napoyheadedgirl

      Posted

      HI I am allergic to penicillin as well but find doxyclycine very effective.  Try that one.   x
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