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,...
Does anyone have their docs do wound cultures and how often?
Mine has yet to do any on me so am I suppose to tell her to or what?
Mine has yet to do any on me so am I suppose to tell her to or what?
I'm not even sure what the point of that excercise was, nor how I'm supposed to interpret it: "We found 3 bacteria that in our lab worker's opinions don't have anything to do with the horrible situation in which they were discovered, because they are normal skin bacteria that don't cause problems for other people who carry them" --?
But from what I gather, that may be somewhat typical for HS, even to the point where swabs coming back "sterile" in some case may mean that in the lab's opinion, there isn't anything commonly associated with observed symptoms. I don't see how any swab could come back "sterile" considering the parts that were just swabbed, but you get the dichotomy, right? One the one hand, contamination of samples with ordinary skin dwellers is considered so common that it ought to at least raise an eyebrow when no organisms are detected... or something like that?
Also I got from my doctor that I need to come rushing in at the first sign of trouble if I want good bacteriological results, as if he's going to actually be taking cultures if I rush into see him every week with a new boil, or I should race into the ER with a new wee boil because in reality he has no openings in his appointment book until long after the first sign of trouble. Arrggghhh...
I will give my doctor points over the last visit, where I'm been keeping after him about one of the more troublesome infections that I think I may have, and got it out of him finally that the local lab isn't even equipped to test for that organism - or he's just trying to wash his hands of the whole "incurable" mess. At least I'm at liberty now to start tracking down an infectious disease specialist, because he'd have given me a referral if I'd needed one with my new health coverage.
Also my head is still reeling a little from dealing with my last doctor, who I rather liked. I think if I'd brought in my suspicion to that doctor, they'd have been right on it. Unfortunately the same doctor never put some of the unusual symptoms into a search engine themselves... That was before the diagnosis of HS, though, when my old doctor was willing to try about anything.
I don't know, the diagonsis is starting to seem as much like a curse as a blessing. It's been wonderful just to know what I have so that I don't sit around catastrophizing about all the things that I might have, or... you know, when it's a mystery disease you don't know what it's capable of next, you think your head might explode or your arm might fall off any minute, so in that sense it's a huge relief just to know it's *only* HS...
On the other hand, I'm starting to feel like once I got that diagnosis, that someone just rubber-stamped "incurable" across my forehead and all the doctors suddenly just stopped trying except when things get potentially life-threatening. My last doctor visit ended with the doctor's declaration that he's not going to use antibiotics to treat HS. Not even doxy? I'm speechless.