hidradenitis suppurativa

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Is there a HS specialist? I have been dealing with this between my legs and it goes up into my butt crack. I was diagnosed in 1997 with hidradenitis suppurativa . From 1997- 2000 I would periodically go to a surgeon for outpatient surgery, for removal of one or two at a time. I was also placed on antibiotics that did not seem to help. I regularly take Epson salt baths, use pimple cream, and wipe the area down with alcohol. This gives very little relief at this point. It use to prove much more affective. I had surgery in 2005 and couldn¿t walk for 3 weeks. It seemed to be better for about 1 year. After a year it got much worse. I¿m at a point where the scarring is as bad as it was before the surgery. At any given time I have 2 to 3 swollen up around my v area and 2 to 3 around my anis. It is hard to sit, walk, or even stand at times. I have an appointment with a dermatologist May 25 and we¿ll see what happens. I just feel like I have tried everything. Any suggestions would be helpful.

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    Sorry to hear you're in so much pain. Unfortunately, HS specialists are few and far between. Talk to your dermatologist when you see him/her and see if they know of anyone close by. The chances of that are pretty slim, though. The closest one to me is about 14 hours away by car. Dermatologists do know more than most, but you're much better off finding one that has experience with HS. Even then, there's only so much they can do.

    I can see that you've tried most of the standby treatments for HS, antibiotics and surgery etc. And I'm very sorry that none of them really helped at all. There are a few more options available to you. One I would personally recommend is trying to identify if you have a trigger. The most common would be diet, hormones, stress etc. So, for me it was mostly diet and a little bit of stress. Nightshades were a huge trigger and as long as I stay away from them, and keep my stress level under control, I'm in remission. Have been for almost two years now. Gluten, sugar and nuts seem to be a pretty common trigger as well. An elimination diet would be the easiest way to determine if you have a dietary trigger.

    I'm not sure if you've ever tried birth control, but if your HS is triggered by hormones, hormone replacement therapy can definitely help with the breakouts. If your breakouts get worse during your period, then you likely do have a hormonal trigger.

    Stress is also a huge culprit. Especially since the breakouts themselves cause a lot of stress. I was stage 3 before I was able to put myself into remission, and I had it under my arms, in my groin and all the way up my butt. So I totally understand your pain. I multiple surgical procedures, and I don't know how many times I had to have the cysts drained, and I honestly have to wonder how many of those cysts were the result of being so stressed out from my other cysts. Yoga does wonders for my stress level though. I'd recommend it to anyone who needs help managing stress.

    If you would rather go the medical route, or if you've already tried the diet and hormone thing, then you might try talking to your doctor about taking a biologic, which is basically a drug that suppresses the immune system. Since HS is an autoimmune disease, biologics would be an appropriate step and a recent drug trial using biolgoics to treat HS showed some pretty remarkable success. I wouldn't recommend it unless you've exhausted all your other options though. Not only does it make it harder for your body to fight off infections, biologics are so new, that doctor's don't really know what the long-term side-effects of these drugs are and even some of the short-term side effects are pretty severe. Think chemotherapy but on a smaller scale. But there comes a point when it may be better to take the chance. This should be something you discuss with your doctor in detail. Get all the information before you make a decision. And don't let the doctor pressure you into anything. It's your body and you are the one who has to live with that decision, not the doctor.

    I would seriously consider taking a hard look at your diet and hormones before going down that road though. Good luck!!

     

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  • Posted

    Hi Jessica, you poor thing. I too am a sufferer and my groin areas etc are horrendous.. I've done the surgery antibiotics washes and spent hours crying in pain as I am sure you have. I have been taking some really good things lately that have really helped and soothed and made me feel better. Please message if you think I can help. The products are natural and have so many benefits .. I've always been conventional medication taker but that dosnt work and researched other alternatives and what I've taken has had surprising results.
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  • Posted

    I'd definitely second looking at your diet and lifestyle. My 

    HS wasn't that advanced thankfully but since I realised that potatoes were and instant trigger and wheat and processed foods contributed too, I've hardly had any flares. 

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  • Posted

    Hi

    I am venkat from India. Age 27. I had HS when i was 25 . It started with Under arms, later groin and at the end on the buttock. I had used all medicines including high dosage of antibiotics. but they were of no use. I visited all the top dermatologists in india . One doctor told that HS is not curable by medicines, it needs to be removed by operation by a plastic surgoen. I later visisted the top plastic surgeon and got operated 3 times, initially groin, later under arms and last buttock. Now i am free from HS. Thanks to my surgeon. The HS needs to be removed from the roots , else it would come up later after few months. So u need to consult a good surgeon and get it operated. Thats the only solution HS has. Hope you recover quickly.

    Thanks

    Venkat

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  • Posted

    look into your diet. i have it in the same area. two surgeries in 2016. i only found relief after realizing this was the physical manifestation of a gluten allergy. surgical wounds never healed until i cut gluten out completely.

    go on a strict elimination diet - your entire body will thank you. avoid dairy, gluten, nightshades, and anything you know you're allergic to for three months. and once you've got equilibrium, add a food group back in maybe once a week. i can tell if i broke my diet within hours. (the reason why i'm checking into this place today is because yesterday i accidentally had a non gluten free Starbucks drink and a couple hours after, definitely 12-18 hours after, i felt the reaction occurring, when it hasn't in over six weeks - the last time i slipped!)

    i know how difficult it is. you are not alone. be strict. be kind to your body. take deep breaths. and you'll be ok. just clean up the diet and take it from there. exercise will also help. yoga is good for me and i have it in that same area.

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