Feeling Alone

Hey all,

Just wanted to say if you have posted on this subreddit, I appreciate your vulnerability.

I was initially told my HS was possibly folliculitis/cystic acne/staff infection etc. The diagnosis was mentioned often, but danced around.

I finally had a doctor two years ago see me who said "oh this is definitely HS and if we don't do something, you could have significant scarring. We don't want it to get any worse. " This was incredibly validating after years of feeling dismissed.

Most of my symptoms are in my groin. I have some tracts that leak when I press on them. I had to get one lanced before as well. It's been manageable with minimal meds, thankfully. Recently I got a new lump closer to my vagina, about the size of a marble. Incredibly painful and deep. I went in today to see my dermatologist, thankfully I found one who specializes in HS and has PA's who can make time so I don't have to wait months. I got a steroid shot near/on the flare up - and it HURTS. It hurts to walk, it hurts to sit. It hasn't been draining and the doctor said wait 12-24 hours to see any improvement. My usual go to is a salt bath with warm compress but I can't do that for 48 hours.

Just venting because I don't know anyone who struggles with this in real life. I feel like my small patches are small in comparison to what some others deal with (I don't take it for granted) but they're still big enough to affect my self esteem and daily life, especially during a flare like now.

I'm grateful for this group because it's the first time I've read stories where I can relate or understand what it's like. It's the first time I've shared I am diagnosed with HS, only my partner and my mom know.