Let me warn you ahead of time. Hidradenitis Suppurativa is pretty gross- it's basically chronic boils. Here is the Wikipedia entry about it. If this sort of stuff grosses you out, you might want to go read elsewhere, because I'm going to talk pretty frankly about it.
I have had hidradenitis suppuritiva, or HS for short, since I was 20 years old. I was just diagnosed with HS, however, last year. This is partly due to the fact that I was embarrassed to talk to anyone about it, and then when I finally started talking to doctors about it, I was brushed off and told it wasn't a big deal.
The first time I got a boil, I freaked out. I was working in a mailroom for a large book distributor here in Nashville. We had 4 stations- 2 of them stations where you could sit down and 2 stations that kept you standing up all day. This, of course, happened on a week where I was at a sit down station. I developed a boil on my hiney and it made sitting horribly painful. I finally broke down and asked my mom to look at it. Let me tell you, dropping trou in front of your mother when you're 20 years old is pretty embarrassing, but not as embarrassing as it would have been in front of a stranger. My mom just said, "Yeah, that's a boil. I used to get them a lot when I was your age, and your grandpa had them pretty badly, too. I think it's hereditary."
It wasn't that bad for many years, but after the birth of my daughter, it started getting worse and migrating from my butt and groin area to under my breasts, my armpits, and around my belly button. It went from a minor occasional annoyance to a full blown problem that sometimes causes me to be able to normally function.
I went to several different doctors about this over the years. One doctor lanced a boil for me with no pain relief. He told me that it wouldn't hurt that much and putting the lidocaine in would hurt more than the lancing. Well, now that I've had a boil lanced and drained both ways, I can say this doctor was a terrible liar. It hurt horribly without pain meds. Injecting lidocaine is uncomfortable, to be sure, but cutting me open with a scalpel with no pain meds is agony.
Doctors tend to do that kind of stuff not to be deliberately cruel, but because they are ignorant of this disease. Like I said before- I was brushed off for years as "having a little problem with boils" before my current doctor took me seriously, did some research, and is working with me to provide the best and most painless treatment options.
If you are suffering from chronic boils, don't be embarrassed. Go to a doctor about it. There are treatment options although there is no known cure. If your doctor doesn't know about this, or doesn't have a satisfactory treatment plan for you, ask for a referral to a dermatologist. This is not something to be embarrassed about- this is something that is treatable.
As for me, I'm combining diet and lifestyle changes (losing weight, restricting caffeine, avoiding fried foods) with antibiotic therapy and pain control. Yesterday I had a flareup so bad that I had to have the boil cut open and drained. Now we're going to me using the antibiotic constantly to hopefully prevent flareups. Eventually, I may have to have surgery. But at least we're on the right track.
There's no need to continue to suffer. No need for embarrassment. The more of us that "come out of the closet", the more awareness and hopefully more research will be done and a cure may be found.