Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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HS Struggle

Cindylouwho45
Cindylouwho45

Hello new here. Ive have had HS since I was 16 but was just diagnosted about 7 years ago and I'm in my late 40s.  I've have had flairs off and on all my life but have been able to get them under control fairly quick. Well back in Jan. I got a really bad flair in the soft flesh of my under arm with multi boils. They broke open, drained and did not get better so I went on short term antibiotics (10days) to get rid of the infection. I took the meds but 3 weeks later I ended up at the Drs as it still looked and felt really bad. The Dr looked at it said it "does not look infected...use hot compresses, Hibaclens (which you can't use on an open wound) keep it covered and it should be fine and if you get insurance you would be a good canadate for surgury...no antibiotic needed. After two weeks I ended up back at the Dr's today as my arm is now breaking open in multi places, is awefull back and blue, hurts like crazy and it takes a 5x9 pad to cover the area. I saw a differnt Dr today and WOW!!! He knew about HS and has had lots of previous experience with it and he listened to me. We talked about some different treatment plans and options to try to end this out break. I am going to do a 30 day antibiotic run, try metformin once a day (he said some people have had luck useing this to prevent and help clear up out breaks), use an antibotic cream on the area and he wants me to see the wound care nurse to help monitor arm. He said my other arm looks really good right now and I am NOT a good canadate for surgery (I didn't think I was and it's good to hear that) He also said next time we can drain the boils or try steroid shots in the area. He also said there are also other things to try but to start with the least and go from there. I agreed with him. It was wonderful to talk to a DR who listened and knew what was going on and did not talk down to me. Thank you for listening to me and remember keep going as people out there do understand but sometimes it takes going to more than one Dr to find the right help. Remember you are worth it. Hugs 

LJorja
LJorja
Cindy, I was diagnosed years ago, even though I got my 1st one at 14 (I am in my early 40s now) It was always rough trying to explain to different doctors that this disease had nothing to do with my weight, or cleanliness but everyone I found suggested they were the doctor and I was the patient. I am so glad that you found a Dr that actually knows what they are talking about. It took me a long time to find mine. The Dr I have now, actually didn't know about it, but took the time to listen to me & after the first lancing; he actually did his own research on it. He actually has others in his office learn all they can about this stupid illness to help me (as well as another patient that comes in) whenever I come in. I am a stage 3 survivor and fight them all the time.
It was suggested to me to use a Tea tree oil type soap, (it smells a lot better than the Hibiclens ) & whenever you can, use paper adhesive around your wounds or else it will begin to tear your skin, Epsom salt baths usually help too, just some things I thought I would pass on. Good luck & just keep fighting.
Cindylouwho45
Cindylouwho45
LJorja, Thank you so much for the suggestions and I understand in the past I've heard it's the weight, cleanliness or you don't shave enough (for me shaving makes it much worse.) I am glad to hear you finally found a Dr who listens and is willing to learn about HS and how to try to treat it. My Dr yesterday also said they are thinking HS is an autoimmune disease. I was up late last nite and found a site that has some good info on it. http://www.hs-foundation.org/
Do you know can you use Tea tree oil type soap on open skin? I have been using a zinc based tape but it is causing problems so I will try the paper adhesive tape. Thank you so much for the info and responding. :)
MegsMaaMa
MegsMaaMa
My grand daughter has HS and had a recent surgery on her left arm pit. She is also a Downs child so any medical stuff is extremely difficult on her and her parents. After the first bandage change after the surgery, which left the room and everyone involved looking like a war zone, we started looking for other things than the tape. If you look on line for arm pit wound dressing you will see the ones using an ace bandage that you can wrap without any tape at all. My daughter in law uses it. She also has my grand daughter on a no=potato, no-tomato, low sugar diet. She is also using the organic coconut oil that I have combined with fresh aloe gel in my magic bullet. We are hoping this works. But there is someone on here that is talking about laser hair removal and I am going to talk to my daughter in law about that as well. Good luck to you.