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,...
Hello! I'm Alex and I am new to this forum. I actually just found it tonight and though I might as well join to see how other people were managing their HS. As you can see from the title I am 16 and was just diagnosed last November. I'm not too sure what stage i'm at currently though I would estimate stage 3. I have sores literally all over my body, underneath my breasts, on my tailbone/buttox, under my belly and on my sides.
I just needed to know that I was not alone out here in the world with some un-known disease... It really frightens me and I know my family doesn't like it either and i'm not sure what to do. Right now i'm on an antibiotic (Doxycycline?) And am applying a topical ointment with silver in it I believe.
This disease has literally crippled me to the point where I can't even go to school and need to take my classes online. My posture has been completely destroyed and its tough to do literally anything physical. I am trying my best to do what I can in an effort to put it in remission. I have given up red meats and white meat chicken in an effort to prevent inflammation.
But to be honest, i'm not sure if my treatments are working as I have been doing them since November. This probably hasn't been enough time though so who knows right? What I really want to know is what do you guys do for treatments? I'm trying to find some Hibiclens right now and also tumaric capsules to take so hopefully I can start on that soon.
Well, that's about it really and thank you for reading my thread.
-Cheers!,
Alex
I just needed to know that I was not alone out here in the world with some un-known disease... It really frightens me and I know my family doesn't like it either and i'm not sure what to do. Right now i'm on an antibiotic (Doxycycline?) And am applying a topical ointment with silver in it I believe.
This disease has literally crippled me to the point where I can't even go to school and need to take my classes online. My posture has been completely destroyed and its tough to do literally anything physical. I am trying my best to do what I can in an effort to put it in remission. I have given up red meats and white meat chicken in an effort to prevent inflammation.
But to be honest, i'm not sure if my treatments are working as I have been doing them since November. This probably hasn't been enough time though so who knows right? What I really want to know is what do you guys do for treatments? I'm trying to find some Hibiclens right now and also tumaric capsules to take so hopefully I can start on that soon.
Well, that's about it really and thank you for reading my thread.
-Cheers!,
Alex
I had surgery on 5/2 and I'm glad I did. Unfortunately, there is really nothing you can do to make HS go away when you've reached stage 3. These wounds are hard to close up and they only get larger. I've tried Hibiclens and it does help keep the area clean I guess, but it wasn't worth continuing in my opinion. I was put on Doxycycline but stopped using it the next day since I felt this ridiculous chest pain. It's been 6 days post-surgery and I am going to get my stitches removed this afternoon. I am now on Bactrim for 14 days.
I would suggest you see a few surgeons and get their opinions on your HS areas and ask them what stage you're on. I saw a few surgeons and one of my questions to them was "do you think there is something besides surgery that can heal these wounds?" and when they said surgery was pretty much my only option, then that's what I did...I honestly feel better after the surgery. My doctor did not remove my sweat glands; he removed the scars leaving a nice clean one long stitch. I am very happy with the outcome...I know it's too soon to know what will happen or if it'll return in the future but what I do know is that this is the first time in 3 years I am pain free.
Speak to a few doctors, know your options and of course, feel free to email me with any questions. HS is a very painful and frustrating disease and speaking to others def helps. I wish you the best.
I'm so happy I don't have it under my arms, or at least I haven't gotten it there yet. I am obese and I have one right smack dab in the middle of my chest and it HURTS when I sneeze which really sucks this time of year to to allergies. But thank you again for your kind words and advice! :).
I'm 18 and have had HS since my freshman year. I have it in my groin area and its gotten so bad that I have had many mental breakdowns but HS can be controlled, you just have to find what remedy suits you. My dermatoligist recommended Hibiclens and an acne cleasing wash. I also take hot baths every morning and put loose bandages on any flare-ups. I have been doing this for about nine months now and I get one flare-up every month or so that goes down without lancing in a couple of days. See some dermatologists and see what they have to say. Stay hopeful!