Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hi, I'm 15 and I'm from nz, I have had hs for about 2 years now, it's started to get worse and I've tried antibiotics but none of that works, I'm to scared to get surgery because I've read online and a lot of people have had it and it hasn't worked for them. I also read someone's story about how they had it for a long time then they tried a diet and found out what her body is allergic to and for her nightshade veggies were what she was allergic to so she stopped having them and then she stopping getting hs, she said it's the bodies reaction to a food or something. It's affecting me a lot because I love playing football but I can hardly do that anymore and even just going out to the shops with a sore, it'll hurt. Anyways I've come and joined this group mainly for support and if anybody has had anything they've done that has actually worked, I know that you can't exactly permanently get rid of it but apparently there are things that help ALOT.
Id love to hear from anyone, thanks
I hope this helps a bit. It's a daily struggle but please know you are not alone.
In terms of seeking out medical help, your best bet would be to try to find a doctor that either specializes in, or at least knows something about HS specifically. I realize that being in NZ, that might not be very easy to find, but HS is a pretty widely misunderstood condition, even by medical professionals, so it helps to have a doctor that you don't have to educate.
In terms of managing your HS on your own, (which is what most of us end up doing after our doctors turn out to be pretty useless), there are a lot of different things that people talk about, here and elsewhere that might help you deal with flare ups. The thing to keep in mind though is that HS is nefarious for not responding consistently to treatment. What works for me might not work for you, and you're probably in for some experimentation to find the thing or combination of things that really gives you some relief.
Unfortunately, you're not wrong -- HS is an incurable condition, so it's not possible to cure it or get rid of it. The best you can hope for is to manage it well. That means limiting the number of "flare ups" you get and limiting the pain and duration of the flare ups you do get. I know that doesn't sound very encouraging, but I've been living with HS for over 10 years now, and while life is by no means perfect, I've figured things out well enough that I'm able to live with it with a minimum of disruption to my life, and I'm sure with some research and help, you'll be able to as well.
Cheers!