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Very depressed. Severe hidradenitis. Waiting for possible surgery.

Posted , 10 users are following.

BethGA
BethGA

I was diagnosed a couple of years ago with HS, though I know I've had it since I was in my 20s.  (I'm 52 now.)  I've had once successful surgery on my left armpit with a flap closure.  Scar doesn't look great, but no HS there anymore.  Saw my plastic surgeon last week who seems hesitant to do more surgery until I see a wound care specialist and an infectious disease specialist.  He thinks the ID specialist can maybe suggest a better antibiotic to calm down the inflammation before surgery, and since he's not going to do a flap closure this time (long story), we wants me to see the WC specialist as a consultation prior to surgery to talk about the open wound healing processs.  To complicate things, I have type-II diabetes, which makes healing more difficult, apparently even when it's under control, like mine is.  I'm just so frustrated, tired of waiting, in pain.  Oh yeah, pain.  The last time I saw my dermatologist who diagnosed the HS and referred me to the plastic surgeon, I asked her about pain control.  She simply smiled at me and said, "I don't prescribe pain medication.  See your internist."  I've got active advanced HS in my right underarm now, in my right groin, both perianal clefts, and a small but weeping spot on my upper right thigh.  I'm just so over all this, but I know there are no quick fixes.  I feel like I've lost my life.  The only time I'm moderately comfortable is when I'm in my reclining chair or in bed.  Not a way to live a life.  I currently take the oral antibiotic minocycline and topical clindamycin and wash with a benzole peroxide cleanser.  None of which seem to give me any relief.  I guess I'm just reaching out because I'm hoping someone else out there understands my anger and frustration...and fear.  My husband is very sympathetic, but he really doesn't understand.  How can he when he doesn't have HS?  I'm just not in a very good place right now.

3 likes, 8 replies

8 Replies

  • fred_11743
    fred_11743 BethGA

    Posted

    Ayo, I started Humira 2 months ago. I had major breakouts, 2 3 4 , a week. Under my armpits and inner thigh. I'm a delivery man. Imagine me in and out of my truck front to back 30 40 times a day. I've taken antibiotics galore, doesn't help. Humira, Humira, HUMIRA has worked wonders for me. I've been taking it for 3 months now. Most of the swelling under my arms is down by 60 to 70 percent. No new break outs. I've had 2 small pimples that usually grow to golf balls, but at B B size they just go away. Give a try.

  • ashley090309
    ashley090309 BethGA

    Edited

    I can assure you that you're not alone. I was diagnosed with HS when I was 19. I have had multiple surgeries and the only thing that it seemed to do was make me afraid to wear a bathingsuit ever again. I have leopard spots all over my thighs. I don't think that doctors realize how much pain that HS causes. I asked a doctor a few years ago for a REFILL on a 10 day perscription (30 pills) that I had filled 8, yes EIGHT, months prior and I still had 3 pills left... he informed me that I was a drug addict and he wouldn't give me a refill. I have found that tea tree oil helps bring down the swelling and pain... and as a bonus it smells good so no eeewyy stench from the ooze. I hadn't seen a doctor (until today) in almost 2 years because I feel disgusiting and ashamed to ask for assistance. I can't get comfortable and I'm ALWAYS in pain. If you figure out a trick to comfort, please let me know.

    • WoundGoddess
      WoundGoddess ashley090309

      Edited

      Emuaid has tea tree oil in it. As well as many other natural ingredients that our wounds can benefit from. I've had HS for 10 years now and this is the only relief for me and smoking tons of pot lol good luck and do your research on the emuaid

    • paige11595
      paige11595 ashley090309

      Posted

      Ashley, I tried the Tea tree oil too! I figured at this point what's the harm since mine is so bad. 

  • WoundGoddess
    WoundGoddess BethGA

    Posted

    try giving emuaid a try. it's worked so well for me. It's healing my smaller wounds sooooo good and my much bigger ones are draining Better and reducing in size. It's a homeopathic medicine 100% natural which is a blessing and break from those toxic antibiotics. If you try it please let me know how it works outfor you.

  • Voidrunner
    Voidrunner BethGA

    Edited

    Hi there, cheap 70mg over the counter zinc gluconate pills works for me, I'm in total remission and no new boils, I took 3 every morning when I had a flare up, then after 2 weeks went down to 2 and are again now on one a day, its not a cure, but a friend of mine recently showed me his HS and found it funny that I was not horrified , we've been friends for 32 years and we both had HS for more than 20 and we never spoke....this is truly the secret disease. I told him to start taking zinc pills, that was 2 months ago and he is in total remission, even the dark blue marks are going away. The zinc is not an immediate fix, but it seems it will hold the HS at bay.

    • Dreamer34
      Dreamer34 Voidrunner

      Posted

      where did you get the zinc pills? cant find any zinc glutonate - will any zinc be ok?

    • kay346
      kay346 Voidrunner

      Posted

      hey ! i have a question do you diet while taking the zinc pills ?

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