Welcome to the support group! I actually just started on this site a couple weeks ago. I have had HS since I was very young, probably 7 or so. My mom passed away when I was 14 and I never wanted to discuss it with my dad so I pretty much kept it hidden from everyone until I had my own insurance. I have been to many different doctors in my life and most had no idea what it was. This past year was the first time that I actually had a name for what I had. Which honestly made it hard because I could actually research it. It is terrifying to see pictures, ect. The hardest part is that no one knows how to cure it. The doctor I have now actually told me that they don't know much about it, which I find crazy since all of us know so much. You will find a lot of good information on this group and honestly the best part is that you can reach out and talk to people that know 100% what you are going through. I wish you nothing but the best. Good luck and keep your head up high!! I am 34 and lived with this my whole life, I don't know what it is like not to have this. Maybe one day.

Hello all. I have had hs for 17 years. I am in stage 4 and my doctor had also recommended humira. I am very least about anything that compromises the immune system but at this point it's worth it. I have none areas of my body affected. My doctor says he has never seen it on somebodies face. Does anyone else have on the face? This is my first post. Any feedback would be awesome

Thanks for the kind words. SarahKellog I watched an episode of Mystery Diagnosis on Youtube where a guy had HS and it was on his scalp and face. If you do a search on youtube you will probably find the video. It was split into three parts on youtube.

Sarah Yes I do get some small spots on my face. If I catch them right away I use complete polysporin and they usually go away. I have had this disease for 40 yrs. Misdiagnosed until 6 months ago believe it or not. But it was always in my groin and vag area. I only had a boil now and then. But recently I started getting tunnels so I finally got to see a derm and he put me on spiro. So far it has only got worse. Only been on it 7 weeks. This is the worse I have ever had. Still hopeful this will help

I have a couple of small spots of HS on my face now, same as on my rear - thick, wavy, waxy, inflamed, irritated, and riddled with tiny cysts, and can't quite seem to decide if it's going to form a scab and heal over. Been going on for weeks now.

I've been trying coconut oil in my diet - since I don't have any known dairy issues, I'm doing about 1 teaspoon plus a little chocolate gently warmed and stirred to make hard shell ice cream topping for desert). Certainly the most pleasant HS treatment I've tried to date, and I think it might be starting to help - but it's a little too soon to tell as I've only been at it four days now.

What's odd is that so far I don't think it's helping the lesions on my rear one bit, although they are remarkably similar... Maybe it's just that the ones on my face aren't anywhere near as bad yet? Although it's also odd that when I dabbed a little on the facial lesions directly, it almost seemed to be making it worse. As usual, I guess the behavior of a weird disease wants to be weird that way?

Sorry to hear how badly this has interfered with your life, ksp2463. It's cost me just about everything except my partner, thank Heaven.

Dunno what to do but keep learning and keep trying to figure this thing out. At the rate things have been moving, not at all surprised if it will be some of us who get it figured out before the doctors do.