Living with HS: Tips and Support

I’ve got this little lump under my arm—maybe about 1.5 to 2 cm in diameter. It’s painful, though not excruciatingly so, and there isn't any noticeable redness on the skin surface yet. My diagnosis is Hidradenitis Suppurativa—I can never quite remember if it's called Hidradenitis or Hidrozadenitis, but I know what it is. This is actually the third time this has flared up on me. The first two times, antibiotics did the trick and cleared it right up... but I have a nagging feeling they aren't going to work this time.🤣
Now, it looks like I might need surgery to deal with it, and honestly? I am absolutely terrified. It’s not even the procedure itself that has me shaking—it’s the idea that this could be a chronic thing. I’ve heard stories about how it just keeps coming back over and over again.

Has anyone here actually managed to get rid of this for good????
What worked for you—was it more antibiotics or did you have to go the surgical route???

Has anyone here had any actual success treating this condition?😢

Maria Martinez6 said:I've got this little lump under my arm, maybe 1.5 to 2 cm wide. It hurts, but just a bit, and there isn't any redness on the skin yet. The diagnosis was either Hidradenitis Suppurativa or hidrozadenitis—I'm honestly not even sure which one is the right name. This is actually the third time this has happened to me. The first two times, antibiotics did the trick and cleared it up... but I have a feeling they might not be working this time. 🤣
I guess surgery is probably the next step, and I am honestly terrified... not really about the procedure itself, but more because I've heard this thing is chronic and just keeps coming back.

Has anyone here actually managed to get rid of this for good????
And how did you do it (antibiotics or surgery)???

I noticed nobody has replied to you yet.
My boyfriend has been dealing with this for a few years now. Unfortunately, he mostly has to fight it on his own.
We actually just started a blog dedicated to Hidradenitis Suppurativa yesterday. We really want to encourage people to stop hiding and come out of the shadows because of this condition.

http://hidradenitissuppurativa.blog..../11/index.html

If you know anyone else, please send them our way. To be honest, we haven't had great experiences with the US healthcare system; most treatments end up being based on talking to people online through forums or just whatever the patient figures out themselves by doing their own research.

Best,

Andrew Richardson10 said:Has anyone actually had any luck treating this thing?😢

My boyfriend deals with it too, but honestly, nothing has really worked for him yet.
We’ve tried reaching out on here—not just to you, but to pretty much everyone posting about this topic. But it feels like a total ghost town... nobody ever responds.
I really feel like people stay way too quiet about HS, and we probably need to be making more noise.
We actually started a blog a couple of days ago—I might have sent you the link already, I can't quite remember, but here it is again just in case:
http://hidradenitissuppurativa.blog..../11/index.html

As you can see, only one person, Mara, has reached out so far. That's it. But we aren't giving up. I mean, there are definitely way more people suffering from this than anyone realizes. If we don't raise awareness, nobody else is going to do it. I mean, when was the last time you even heard someone mention HS in the news? I know I haven't.
I think I mentioned this before, but since my boyfriend has HS, watching him go through it makes me feel like we really have to step up and be active about this!!!

Take care! Reach out whenever!!!

Hi 🙂

Couldn't find an existing thread about this rare condition on Healthline. It seems like there's more talk about it lately, so I figured it’d be good to have a spot where we can swap stories and maybe offer some support.

After years of bouncing between doctors trying to figure out what was going on, I finally got diagnosed back in December 2016—mild HS.
My dermatologist's advice was pretty basic: quit smoking, watch the weight, use some prescribed creams, and if things get bad, head to surgery for an incision. That was basically it.

I stumbled upon some research suggesting that cutting out flour, sugar, and dairy might help. I've been on a LCHF diet for six months now, and I guess things are looking a lot better.

What has your experience been like, or what about your family?