Hi...I've been suffering with this since late teens, I'm now 52. Until recently I didn't even know this was an actual medical condition even though I been to the gp numerous times. I'm so glad to be able to share as I found unless you are living with it people don't understand, it's not something you speak about in general conversation. 'Hey Bob, I've got this massive boil in my groin that's oozing' and walking like a cowboy during flare ups.
I tend to make jokes about it because if I didn't...well, I can't be the only one who has wanted to hid from the world due to it.