Hidradenitis Suppurativa

I have a question for everyone. Have you ever heard of this condition?

And FYI, it's gross.

Since I started puberty, I began developing these "pimples", welps, cysts, super tender areas of skin mostly between my thighs and my private area. These places, they hurt like hell, and when they finally burst, it stinks...it has blood and puss. Sometimes it scars. And when they are gone, they leave pitted skin...like you can tell something was there and stretched the skin and now it's gone. And if you were to feel it, it's like the places are kind of running together...I don't know how to describe it.

It's not just pinched skin...these things come up in weird places down there, like on my labia, inside and out, where the skin wouldn't be pinched. For a really long time I thought I had STDs, even though I wasn't having sex.

Anyhow, so I was looking at a conversation someone was having online and the mentioned the topic name. They said they were really embarrassed about it so I looked it up...and it completely matches what I've experienced.

I guess my question is, have you ever had it, do you know how to make it easier to deal with, who should I go talk to? I asked my GYN, and she had no idea what I was talking about. She looked at it and she had never seen it before. I have no idea what to do. But it's embarrassing for me to be with my SO, not to mention the fact that it hurts and it always flair up at the wrong times....

If you look it up online, they show some very EXTREME cases...mine is not that bad compared to others apparently.

Any ideas?

Please don't be mean, I'm trying trying to seek advice.