I began to develop what I initially called "acne" and now know to be HS quite a number of years ago, probably when I was in my late 20s (I'll be 35 tomorrow). It began as very small cysts or pimples in my groin area or on my buttocks that initially would go away in a few days. I mentioned it briefly to a few doctors and was simply told I had ingrown hairs or folliculitis or it was from wearing jeans most of the time. Over the years, the frequency, size, and duration of them increased to the point where they became so painful and tender that all I could do after trying to sit all day at work, or even just walk, was to go home, sit in the bathtub, and cry, and sometimes just drink a lot to try to forget the pain. I again talked to my doctor, who responded in the usual fashion and told me I just needed to make sure to wash more often. The worst part was I couldn't even talk to anyone about it because it was so personal and embarrassing. If I had to take time off at work because I just couldn't sit any longer, I always had to come up with another excuse like having a migraine, etc.
Last week I had to see a dermatologist for another reason and happened to tell her about this problem. She knew right off what it was. I was so relieved to finally have a name for this problem. I was even half expecting for her to be able to just give me some antibiotics and it would go away, so, of course, I was shocked to hear that I would have to deal with this problem for the rest of my life. Although she was able to diagnose it, she wasn't very forthcoming about providing any information about the disease (other than it may be related to hormones) and I should consider taking estrogen. I was so dumbfounded by having a "lifetime" illness, and that I would have to deal with this pain, that I couldn't even think of questions to ask her. I went home and did some research and was really happy to come across this list and what it could mean for anyone that suffers from this illness.
At this point, I'm still at the angry and confused stage. This illness has not only affected my ability to work at times, but it also has (and is) affecting social and intimate relationships. But, I also know that half the battle is won now that I know what is it; I think the other half of the battle is being able to talk about it and get advice and support from others that suffer the same thing.
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