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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/ Hidradenitis Suppurativa Support Group

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SirLimpsalot
SirLimpsalot
So I've had a whole bunch of surgeries (30 gnarly scars to prove it) and went to a Plastic Surgeon today. She removed 3 of the little bastards from my face (one behind my ear). Anyone else get them on the face? The Surgeon was great- she cut just where I showed her but was convinced that it was primarily a disease of the "apocrine sweat glands". I'm convinced that the sores occur more due to location (damp tender skin in high friction areas) than anything else. She indicated that the majority of the surgeries were in "hairy" areas. Almost all of mine are in areas where there is virtually NO hair- just skin to skin contact or under clothing seams.
I'm convinced that the root cause is viral infection that our autoimmune system mishandles.


Adding to the scar collection regards

Bubba
HSchich
HSchich
I've only had them on my armpits... My doctor told me that HS is misunderstood, that it is not caused by sweat glands and that hormones is what causes HS. I have no clue what HS really is but I must say, I got my first breakout when I gained weight 3 years ago ...35lbs (lost the lbs! Yay!). HS seems to be a diseases that is not fully understood by many doctors.
Leonessa
Leonessa
Your statements resound with me. i get them on my head, hip, back of knee, as well as groin, buttocks, and armpits. Dampness and friction are absolutley triggers!
deleted_user
deleted_user
They are common in "hairy areas" but, if that was the main criteria, most people would get outbreaks on their butts. Not everyone has a hairy butt! It's more rare to get it in places other than armpit, groin, buttocks, and under your breasts. Rare doesn't mean impossible.

The sweat gland theory is the "old standard" when it comes to diagnosis and treatment. But it seems like more and more doctors are saying it's a hormonal and skin disorder, not a gland problem.
ShannonA
ShannonA
I dunno about the viral part, but I am all with ya on the autoimmune side. There are a few folks here who get them on their face and other non "normal" areas. Not many doctors really have a clue and most are just doing a "best guess" kinda thing. Some care and are doing the best with what little info they have, others don't give two shits and don't bother to look deeper and are happy to keep spouting the same old ignorant junk cause it's just so easy to do and easier than actually looking further into HS.
It seem like the doctor you have cares, but don't know much other than what little bit she has been told/read ect.
Wow..30..I'm halfway there..I have 15 scars (not all from HS surgery, but surgical scars none the less). I do hope you are able to find some lasting relief. In the areas where you had surgery did the HS come back there or just move to a new spot? I had surgery on my left armpit back in October of last year and so far so good no new spots...although the HS has gone apeshit in other areas..kinda like a "Oh so you think you gonna cut me out huh? Well lets just put you a new spot RIGHT HERE! HAHAHAHA" so..lol
HSchich
HSchich
ShannonA,

"Oh so you think you gonna cut me out huh? Well lets just put you a new spot RIGHT HERE!"

That was hilarious! :)
ShannonA
ShannonA
Thank you HSchich, I try like hell to keep some humor about me, especially when dealing with my HS, and it makes me feel a bunch better to know I gave at least one other person a chuckle or two.
^._^