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HS and finally despair

Posted , 11 users are following.

Bee81
Bee81

So, I’ve had HS for over 20 years.  I’m in my late 30’s.

I have tried EVERYTHING now and nothing works.  Antibiotics, surgery, immune suppressants, diet etc etc 

I was always slim and never smoked.

Basically, I want to give up.  This last year it is worse than ever.  And I hate it.  Really really hate it.  The pain, the continual humiliation, the constant degeneration.

Endless counselling, CBT, even pills do not work.  Why?  Because it is objectively disgusting.  There is no other way to look at it:  It looks terrible, and smells putrid and it will only get worse and worse.  I know the coping techniques, ‘mindfulness’, being kind to yourself... but all that is undone when i look in the mirror and see the rankness of my HS riddled body.

I don’t know why I’m posting.  Perhaps i’m tired of the upbeat clap trap i’m fed from professionals.  Perhaps to make people realise the abject pain of it.  Perhaps because I want to give an explanation about why, sometimes, I just want to not go on any more.  Perhaps because I desperately need help.

I hate that I have become so weak but I don’t know what to do.

0 likes, 22 replies

22 Replies

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  • myra8401
    myra8401 Bee81

    Posted

    I have felt like you before but you have to keep going. I can barely walk sometimes because my boils gets big as a golf ball on my growin and between my bottom. There is no cure just keep trying to you find what works for you.
    • christine60829
      christine60829 myra8401

      Posted

      I have them on my breast and bottom and the groin I have tried everything and nuttin is working on me I can barley walk and nuttin I can do. So done with all these
    • myra8401
      myra8401 christine60829

      Posted

      Yea recently they have been coming in my face. I've been dealing with this b.s. since I was 21 and I'm 32 now still haven't found anything that works. I tried the diet the antibiotics to me they made it flare up more. The only thing that kept them from coming so much was a bleach bath every other day and washing with hibiscus. The one under my breast always leaking and the one on my behind. I hate going threw this crap. I have lost so many jobs behind this crap cause I can barely move because mine gets so big.

    • christine60829
      christine60829 myra8401

      Posted

      I feel the same way I have them on my breast and they just seem to come more now nutting is working for me I have been on so many antibiotics and tried the bleach bath and the hibsisus and that burns I'm about to give up I'm so done with it I tell my husband I didn't ask for this. And I don't want it it's hard to do anything with these I have 3 on breast one under each arm and 2 on groin and bottom really done

    • c02819
      c02819 christine60829

      Posted

      Have you tried a Tumeric or Sulfur soap. I was able to use the sulfur soap for a long while. It dried everything up. I then switched to a Tumeric soap to help with the inflammation. It may be worth a try. The key is to make sure they do not have fragrances added. I ordered mine from Amazon.
  • anotherkat
    anotherkat Bee81

    Posted

    Hi Bee, this is my first post here as I just found this group. My heart goes out to you. There's no way around it - HS is horrible, incurable to date, and it's hard to find doctors who are experienced and give quality care for it. I feel so lucky to have found a great dermatologist. I've never had surgery for it, but have had a consult with a local plastic surgeon who is very knowledgeable about HS and very experienced with it. He was honest that the surgeries, to really help, would require deep tissue excision to get the deep channels out, and that odds were it would come back, tho hopefully less severely. I opted not to try it - so far.

    I happened to this forum because I'm going thru a bad spot with it myself the past few weeks. I was diagnosed over 20 years ago, and as my bumps have never cultured pos for bacteria, I'm off the antibiotics.

    In 2008 I was in my docs clinical study for use of Humira as HS treatment, and I had complete remission and even healing of long-scarred and discolored skin around my groin, underarms, and under breasts. It worked great for me! No doubt i was in the "real drug" study group (as opposed to those getting a placebo).

    It was by weekly self injection. I had zero side effects. I'd still be on it, but I came down with a little case of stage 2A colon cancer in 2011. Though the drug company and most of my docs said it was "probably" unrelated to Humira, I'm not willing to risk going back on it, or any biologic/anti-TNF meds.

    It wasn't until the past year that I started back having occurrences that got super painful and sometimes debilitating. I went in yesterday for a second kenalog (steroid) injection to a lump under my arm, and it decided to open up. My doc flew into a robe and mask, and the nurses held their noses as she drained and packed it.

    I felt so embarrassed, and I was in tears from the pain (next time I'll know to request local anesthetic before all that!). What I thought would be 1 hour away from work turned into 2, and I was in no shape to go back to the office after. Thankfully I have the option to telework.

    I had to put off traveling today so I can sit around on pain pills. I just unpacked it and put on a fresh dressing, and was relieved it is far enough to the front of my armpit that I could reach it all & didn't have to ask my husband for help.

    Honestly, pain pills don't come anywhere near close to controlling the pain, but they relax me and I try to sleep thru the worst of it.

    Hope you're feeling better today. It's a long, rough road, but I find it comforting to share with others in the same mess, and to read about their experiences and ideas. I hope you find something that works for you!

    And thanks to everybody for being here!

  • barbara91275
    barbara91275 Bee81

    Posted

    Had this for 24 years now, I hate it, it hurts soooo much!! Could barely walk the other day. I only have it on my inner thighs and sometimes buttocks.

    I have been in remission for a while only minor zits that won't really hurt.

    I only recently found out L-Carnitine works for me.

    I'm using it for hyperthyrodism/ Graves disease and I stopped taking the L-Carnitine and after a week or 2 there I had a huge outbreak. And chocolate gives me breakouts.

    I usually use zinc cream on the smaller ones and it makes them disappear.

    Now I used iodine cream, but it's bad for the thyroid.

    And back on the L-Carnitine now!

    I get mine for about 15 euros, 60 pills. $ should be around that price range, maybe 20 don't really know.

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