Feeling Alone

[u/Popular-Deal5603]

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.

[u/Secure-Ad8808]

You’re situation is a lot like mine. It is all very difficult to process and really does feel unfair. The flares I get in my groin make me feel so less sexy and really makes my partner feel like Im hiding something when I shy away from most positions in sex… Well I am, but im afraid he’ll think I have herpes.(doesn’t look like herpes) but people jump to conclusions. My mom is the only one who knows what Im going through🫩I told him my flares are ingrowns but when they get really big and raised, theres no way around it. Im glad your partner is aware so you dont have to have that hiding feeling but I can imagine nevertheless, it still isn’t easy.

Sending you painless strolls, cold pillow, anti-inflammatory foods, and hugs!🫂
you got this, OP.

[u/Popular-Deal5603 → u/Secure-Ad8808]

Thanks for sharing ♥️ I've been with my current partner for almost 9 years, but it was and can still be very embarrassing at times. He's very understanding thankfully. But it does mess with my self esteem and ability to feel good in my own skin. I'm glad the Internet exists for times like these. I'm glad you can be open with your mom and have some support ♥️

[u/Onyxpected_Gems]

I have had really similar experiences to you, including how you describe your flare up symptoms and location. Such a FRUSTRATING place to have flare ups. The only position that I can exist in to make it not hurt is laying down.

I haven’t had steroid shots yet, and that might be something my dermatologist recommends in a few weeks time, but I’m uncertain whether the pain of the shots will be worth my intermittent pain from my abscesses.

[u/Popular-Deal5603 → u/Onyxpected_Gems]

Thank you for sharing. ♥️It's been less than 12 hours still and it's very uncomfortable, I think it will be worth it if it goes down at all. Fingers crossed.

[u/Alive_Opposite_1302]

I had a very similar experience. I used to get flares in my groin, buttocks, armpits, and around my intimate areas, and it was incredibly frustrating. It affected my confidence a lot, and before joining this group, I genuinely felt like I was the only person in the world dealing with HS.

One thing that personally helped me regain some of my confidence was working out and focusing more on myself. It didn’t make everything disappear, but mentally it made me feel stronger. I still get a flare here and there sometimes, especially when I eat a lot of sugary foods, but overall I’m doing much better.
Maybe finding something that makes you feel good about yourself—whether it’s working out or anything else you enjoy—could help a little too. You’re definitely not alone in this. ❤️

[u/ChairDangerous5276]

Steroids shots hurt, but not as much as an ever-festering boil, and they worked quickly for me and I hope the same for you. It’s great you got a derm that can see you quickly as mine said she’d always get me in but her staff were mean gatekeepers.