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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Bath time

SummerIsComing
SummerIsComing

Can we get an eye roll for those doctors who prescribe “a hot bath” for a major hs flare up?

MadWife126
MadWife126
Sure doc!! If I can manage to get into the tub without pulling at the inflamed skin in my groin, and then manage to find a way to SIT comfortably because of the pissed off aliens invading the skin on my butt, MAYBE I'll try a hot bath........

If they had the disease they would understand how insane their "advice" sounds sometimes.......
chronic99
chronic99
I hear you, been there. What it worse is that a lot of seems to have infection as part of our HS (if not all of us) and a lot of infections like moisture and heat, I think that's part of how they get them to grow in a dish. I have terrible troubles if I wear pants that trap heat and moisture, had to quite wearing sweatpants and jeans years ago and wear thin baggy stretchy pants. I've had a few terrible outbreaks because the heater didn't turn itself off right when I was under the covers.

As always, ignorance about HS seems to be epidemic in the medical profession. I posted a lot of research if you can find some of my old posts. The Pasteur Institute in France seem to have made a marvelous amount of progress into understanding HS although still no clear solutions last I checked, although I'm a few months out of the loop now. Hopefully others will be following suit soon and offering better results and more practical solutions.

This is usually the first research I show anyone on HS, don't know it's getting harder to find in Google. I think if someone's doctor would read it they might be able to a better job helping.

I think a lot of people including some doctors have misread common statements about HS like "it's not caused by infection" or "it's not contagious" to mean that there isn't infection present, but research is constantly finding otherwise and has been for some time now.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4257786

It's interesting though that it sounds like I might have troubles with the same kinds of bacteria that were most commonly found in this study, and France is clear the other side of the world from me. Those are the only two bacteria I tested positive for in the last 20 years, a non-MRSA Staph and Prevotella bivia.