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,...
Hello. I have suffered from HS since my early 20's, although I did not know what it was until two and a half years ago. I'm currently 36. I get cysts in my arm pits, under my breasts, on my stomach and abdomen, around my groin, on the inside of my legs, and on my butt. I get rashes under my breasts and around my groin. It has become painfully obvious (literally) that friction, heat and moisture are a few of the factors that encourage outbreaks.
So here is my first question - does anybody know of a type of bra that does not have a band that rubs and that does not rise too close to the armpits, but that is still supportive? I am a 44 F, so sleeping bras are unsupportive and sports bras are either unsupportive or they are too restrictive and rub. Underwires are absolutely out of the question. I need something badly to wear to work that does not cause cysts after a single day of use. It's killing me.
Second question - does anybody know of a type of women's underwear that is moisture wicking and that does not rub where the legs meet the body? I also have to be able to put daily pads on the inside, because the antibiotic that I am taking to so called "control" the HS causes frequent yeast infections. Sigh.
Personally, I'm not a believer in using antibiotics to suppress HS symptoms - in fact, antibiotics may be capable of making things worse if they're not used decisively (as in short but carefully selected courses - weeks, not months/years - based on our typical bacteriology or on individualized test results if a doctor is willing to do testing) but then a lot of doctors seem to get talked out of the idea that they're dealing with infections with HS in the first place, even when we have as much as 20-30 years of HS research trying to tell us that.
I hear you, though - I had terrible troubles with friction, out there trying to walk off 50 pounds because my doctor had read that obesity was a big contributor to HS and ended up making a big deal about it. I was almost in tears (often) because every time I would try to do something "healthy" it seemed to make things worse, and I'm sitting there "...But I don't understand, I'm doing more things right health-wise than ever before". My doctor would tell me I should "race home after a walk and shower off," but by the time the friction from walking caused irritation, showering wasn't going to help save me from a flare-up, and somehow I just couldn't get that through his head.
I'm sure it's no way to live, but it really and truly seems like the more I ignore doctor's orders, the less I've ended up bedridden because of HS.
About antibiotics (especially in the sense of actually trying to put a stop to at least one infection out of x number of infections that may be present in affected areas) they DO NOT seem to all be created equal. Doctors probably can't expect to lob just any old thing at you and get good results, and maybe they wouldn't if they realized what they may actually be dealing with.
Anyway, I hope you will get some good answers to your questions, and I really hope you will find a way to at least enjoy a better level of HS management as some of us have.
My derm also recommended cotton garments (I think because they are very breathable) so I always make sure underwear is cotton if that is an option instead of moisture wicking.
All the best!
These bra liners really help. I also love the Playtex 4745 bra. It gives good underboob support with no wires. It's weak on the sides, but you can't have everything! Being firmly in menopause (and living anywhere but sweltering Florida!) has severely slowed down my HS, but I vividly remember everything and I have the scars to prove it. Once I felt the friction, or "tingle", I covered the area with a bandage and that stopped it from fully forming and coming to a nasty head. Not every time, but it helped enough that it was worth the effort. You may also find a good bra on that website! Good luck.