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Looking for experience with HS

Posted , 6 users are following.

Nurseonthego
Nurseonthego

So, since I was at least 14 (now 27), I can recall getting these pea sized bumps near the crease of my thigh, between my butt cheeks, not on my vulva but close to- purple/blue in color, that would drain then leave these ugly purple scars that are soft and indent into the skin. At 14, I was scared to talk to anyone about it, so I just dealt with it.

They seemed to slack off for a while, and I would only get one or two. I would have flare ups and then none for a while. Some were so painful that it hurt to walk or sit on them. I found that as I've gotten older they don't drain anymore unless they are small. If they are large, it's like they are deeper in the skin and so painful. Ones that I've tried to pop myself, will just bleed, or occasionally release a small amount of pus/blood mix. I've also noticed they will go away, then reoccur months later. I've seen multiple Mds who say, an abscess, folliculitis, cysts, that aren't candidate for drainage or lancing. Just gave me oral antibiotics and sent me away. One gave me topical mupirocin for one that had opened up. Told me to stop shaving with razors in the area.

I was finally referred to a surgeon. In July, I had a place excised with local anesthetic and closed with two sutures. They sent it to pathology and it came back as a chronic abscess. The site healed fine. I didn't have another one until a couple days ago. It's so painful and just tender and is about 0.5 inches from my labia, right in the crease of my thigh. There aren't any HS specialty clinics in my area and I looked on the Hs website but no dermatologist listed for my area that specialize in Hs.

My peri area is scared with all sorts of purple scars. This whole thing makes me feel like I'm nasty (even though I know I'm not) & embarrassed. I'm paranoid that I'll pass them to my husband or that I need to bleach the tub after soaking in Epsom salt to prevent my children from catching it. I just don't know what to do. I have an appointment with the surgeon who excised the last place on January 9th, & I plan to to bring up HS to her.

0 likes, 24 replies

24 Replies

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  • Voidrunner
    Voidrunner Nurseonthego

    Posted

    Hi there, HS is not contagious, try over the counter zinc pills (the cheap stuff), and try to find out your trigger food, mine was nightshade veggies, and I think smoking triggers it as well with me.
    • pagal_4200
      pagal_4200 Voidrunner

      Posted

      How can pateint finds this food triggers I mean which symptoms?
    • Nurseonthego
      Nurseonthego Voidrunner

      Posted

      I know it's not contagious, I just feel gross. I'm going to check out the zinc tablets tomorrow and give those a try. I don't smoke, and I haven't really noticed a correlation with food, but I will start a food diary to assess. Thank you for your advice.

    • Voidrunner
      Voidrunner pagal_4200

      Posted

      Basically you need to follow the Paleo diet and exclude nightshades, then when you are clear (no HS) add a food item, if you do not flare up in a few days you are safe to eat that item, it can be a long road but imagine you're rid of HS just because you do not eat nuts...it would be well worth it.

    • pagal_4200
      pagal_4200 Voidrunner

      Posted

      And about zinc pills. Are they useful? And it's side-effects. ?

    • Voidrunner
      Voidrunner pagal_4200

      Posted

      I used them for the past year and a half, no side effects that I can notice, if I use them everyday I get a bit constipated, but every 2 days, nothing. I do tend to take them twice daily if I spot a boil early, that normally helps it come out in 2 days and take 2 days to heal, then I'll fall back to 1 every 2 days, the only drawback is that it's not a cure, I skipped it for a week and had a full HS flare up. busy getting that under control now, after 4 days the lesions ar almost healed up again. I only used zinc pills, no antibiotics or anything else, I also only uses clean bandages with no salves or anything, the lesions need to finish bleeding and heal dry.

    • Voidrunner
      Voidrunner pagal_4200

      Posted

      Oh yes, almost forgot to mention, I only got boils when I forgot to take the zinc pills, when I keep my regiment up I am totally clear, and the good news is that the dark blue marks that HS leaves also goes away after a while if you keep up the regime.
    • pagal_4200
      pagal_4200 Voidrunner

      Posted

      Hmm when you took zinc pills I mean in the morning or night, if we use turmeric or other antibiotics with zinc? Is this good for patients
    • Voidrunner
      Voidrunner pagal_4200

      Posted

      If I take them every second day I take them in the morning before breakfast. If I need to play catch up I will take one in the morning and one before bed time. I have no clue as to your second question, I never tried turmeric, and antibiotics doesnt work for me.
    • Nurseonthego
      Nurseonthego Voidrunner

      Posted

      On the Zinc. What milligram are you taking? I actually got some daily vitamins yesterday and they contain zinc
    • Voidrunner
      Voidrunner Nurseonthego

      Posted

      Hi, I'm taking 70mg , I dont think multi-vitamins is going to cut it, the zinc pills I buy cost between 3$ and 5$ for a 100

    • Muskoka_Canada
      Muskoka_Canada pagal_4200

      Posted

      Pagal, I would like to recommend you talk with your doctor before taking any supplements, just because it is natural doesn't mean it is right for you... Some supplements can be just as dangerous as pharmaceuticals, please use caution.

    • pagal_4200
      pagal_4200 Muskoka_Canada

      Posted

      Mrs houdini, I went to different doctors except 1 or 2. Others said that there is no treatment for this disease. medicines are expensives not in insurance. I am facing this disease since 2015. And now I am jobless. So I am trying to get more n more information about treatment so that new patient's in this page, not face this disease just like I did

    • Voidrunner
      Voidrunner Muskoka_Canada

      Posted

      Mrs Houdini, most doctors and pharmaceutical companies nowadays treat symptoms and do not cure, it makes more money. Taking 70mg zinc a day for 3 months to see if it helps should not be dangerous at all. Taking expensive antibiotics with many more side effects is more dangerous, and is sadly what most doctors would prescribe.
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