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,...
I'm sure you see tons of these posts, but I'm having a minor freakout about all of this and I wanted some...support? I just want to be able to talk about this without feeling totally weird about it.
So I have had these skin things between my legs and under my arms ever since puberty. And now I have one under my breast and one on my stomach for the first time ever. Which is weirding me completely out because I guess I always thought "well...at least they're staying put" but now they're spreading... I've seen doctors about them and I've always just been given Keflex or one of the antibiotics and told it's not anything to worry about. But it is! They never truly go away, and they hurt like heck and leak (sorry, gross) and I was frustrated.
I was put on a new medication for depression, and suddenly I went from having like 1-2 a month that would open up and then mostly heal to having 5 open sores right now that are not healing at all. I finally found something on Wikipedia that talks about this disease and all the symptoms match up. I even sometimes get the tunnel things it talks about, especially right now.
I can't get in to a dermatologist for a little bit, they're booked up. I was wondering if anyone has some advice? I saw the thread about the tumeric and zinc, what doses are people on? and any advice for talking to the doctor about it? I've never gone to a doctor before and said "here, this is what I have, now do something." Somehow I don't think they're going to like that.
Any advice in general? lifestyle changes? food triggers? at this point, I'm open to whatever. I've had these for years (sometimes err...even inside inside, you know?), but this time it is SOOO much worse. I have already spoken to the doctor about ending the new medication that triggered it (it was a very low dose of Lithium, to support my current anti-depressant. Not worth all of this, since there are other anti-depressant options out there.)
Also, I guess I would like some reassurance I'm not doing things wrong. I am overweight, but have been attempting to lose weight. But even when I was at a healthier weight it didn't matter, I still had these...things. Right now I am probably showering too much, 3 times a day. Plus Neosporin on the open ones. I had been using hydrogen peroxide as well but it seemed to make them worse, not better. I'm not sure how to bandaid them, given where they are so I have to leave them open. Unless someone has suggestions? My skin is really weird. Frankly even the glue on bandaids can cause a sort of swollen rash where it was. Goes away eventually but itches.
I am sorry I am going on and on. I have never spoken to anyone but a doctor about these. I always felt like I was dirty or something. I thought they were like some sort of acne on steroids or something.
Any thoughts would be appreciated. I am so glad I found this site. Thank you.
So I have had these skin things between my legs and under my arms ever since puberty. And now I have one under my breast and one on my stomach for the first time ever. Which is weirding me completely out because I guess I always thought "well...at least they're staying put" but now they're spreading... I've seen doctors about them and I've always just been given Keflex or one of the antibiotics and told it's not anything to worry about. But it is! They never truly go away, and they hurt like heck and leak (sorry, gross) and I was frustrated.
I was put on a new medication for depression, and suddenly I went from having like 1-2 a month that would open up and then mostly heal to having 5 open sores right now that are not healing at all. I finally found something on Wikipedia that talks about this disease and all the symptoms match up. I even sometimes get the tunnel things it talks about, especially right now.
I can't get in to a dermatologist for a little bit, they're booked up. I was wondering if anyone has some advice? I saw the thread about the tumeric and zinc, what doses are people on? and any advice for talking to the doctor about it? I've never gone to a doctor before and said "here, this is what I have, now do something." Somehow I don't think they're going to like that.
Any advice in general? lifestyle changes? food triggers? at this point, I'm open to whatever. I've had these for years (sometimes err...even inside inside, you know?), but this time it is SOOO much worse. I have already spoken to the doctor about ending the new medication that triggered it (it was a very low dose of Lithium, to support my current anti-depressant. Not worth all of this, since there are other anti-depressant options out there.)
Also, I guess I would like some reassurance I'm not doing things wrong. I am overweight, but have been attempting to lose weight. But even when I was at a healthier weight it didn't matter, I still had these...things. Right now I am probably showering too much, 3 times a day. Plus Neosporin on the open ones. I had been using hydrogen peroxide as well but it seemed to make them worse, not better. I'm not sure how to bandaid them, given where they are so I have to leave them open. Unless someone has suggestions? My skin is really weird. Frankly even the glue on bandaids can cause a sort of swollen rash where it was. Goes away eventually but itches.
I am sorry I am going on and on. I have never spoken to anyone but a doctor about these. I always felt like I was dirty or something. I thought they were like some sort of acne on steroids or something.
Any thoughts would be appreciated. I am so glad I found this site. Thank you.
I'm changing doctors and I'm not sure the one I'm going to Monday knows anything about HS so I'm printing off some information for him just in case. You might do the same. I can't tell you how many doctors I have been to over the years who misdiagnosed this stuff. The shame and stigma of being seen as dirty or worse makes me drag my feet on getting medical care like I should, but I hope changing doctors will take care of that.
Hugs to you. Having a name for this helped me in knowing that I wasn't the only one although I still struggle with blaming myself for it. Hang in there.
I even question the suggestion that it is due in part to being overweight. While down to 92 lbs for a year I had just as many lesions, so NO self-blame!
Since this is a new doc for you, you might want to print up some info & pictures from the internet to bring along to your appointment. Since most docs hate self-diagnosers, it helps to "play dumb". Say things like "This LOOKS like me, but YOU know best...what do you think?"
I've found that outside of North America, many researchers and doctors use the term "Acne Inversa" instead. I've found much more useful information Googling that rather than "HS". Print one of those up for your new doc, too, so he/she can see ALL the info from around the world.
We do feel your pain: both kinds! Let us know how it went, if you like.
HUGS!