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, culminating in drainage, often leaving open wounds that will not heal.

1 Online
1 Online

What to do??

So I just found out I had HS earlier today. I'm sure I've had it for a good 7 years but was too embarrassed to discuss it, even with my doctor. Anywho, now that I have a name for it, I've been researching it and I'm a little bummed that there isn't a cure. I was kind of hoping this morning that after today I would no longer have to deal with those pesky boils. Boy, was I wrong! My doctor recommended I use Hibiclens and I just ordered a tub of Emuaid. Does anyone use these products or have used? I'm so excited to know that this is COMMON and there's a support group full of people just like me. I'm so anxious to know more about everyone and their stories about battling with HS.

Replies

deleted_user
deleted_user

Hi and welcome! Hs is all about finding what works for you. Some ppl will swear that gluten/grains are the culprit but I have yet to find one person to say that they have gone into remission by going gluten free. Even the ppl who went grain free arnt completely without boils. I managed to slow the progression of things by quitting smoking cigarettes. I rarely get a boil now and if I do they are usually small. I do have two areas that swell and drain a little when I'm close to my period. (Hence why I think hormones plays a large role) my regimine is one turmeric capsule a day (two a day the week before my period) with food. Then I apply desitin to the areas that swell and drain, sometimes up to three times a day. I have never had a boil/cyst lanced all of mine have went away on their own leaving purple spots and sometimes little pitted scars. I have had hs for ten years. Been to many drs who didn't know what the hell was wrong with me and threw antibiotics at me and did little else...anyway I could go on all night. Lol. Welcome again!
tangerinebear
tangerinebear

Welcome, you have come to a fun group of people. All have strong opinions on what works for them and what does not work for them. I have been battling boils on my daughter with Downs since she was 7 years old. When she became 16 years old it turned into full blown HS...... Now she is on a low carb diet; NO, She is not boil free but for the most part we keep the disease under control most of the time with diet.....without her diet she would be a mess. this stuff has to be hormonal cause right before her period we always have breakouts.... sucks but that is the way it is..... again, Welcome and doctors just throw antibiotics at ya! hugs, Tangerinebear xo
ShannonA
ShannonA

I can't speak to the Eumaid, but Hibicleans I use religiously. It helps some. Hibicleans is the type of stuff surgeons use to clean up before surgery. It is supposed to keep skin bacteria free, thus helping with HS breakouts/flare ups.
I'm not one that diet helped, but it is a good idea to try it. I mean if it gives you even a little relief from the repeated flare ups, it's worth it.
Don't let doctors just pump you full of antibiotics, it can cause you to become allergic to them, like I am now to a lot of them, or when you need them for a really bad flare up, they will be ineffective. I learned that the hard way, having a full blown allergic reaction to Bactrim after having taken it for years with no problems.
I hope you can find things on here to help. This group is awesome and we are all here for each other. Don't hesitate to post and vent away if you are having a tough time of it, it's how some of us keep our sanity. HS is hard to deal with not only physically, but mentally as well.
Oh, I've had HS since I was 19 and I am 35 now and considering surgery. Stress is a big trigger for me. And right now the stress is kicking..lol
Hugs.
deleted_user
deleted_user

I am new too! I am sure I have had this condition for many years. I have been used to the blackheads and then also the large hard very painful cysts over the last few years. I just got my first open lesion a day ago and decided i needed to start getting more information because I have been unemployed/without health coverage for the last 2 years and besides not being able to take my anxiety meds just overall horrible things have happened this year so I know that the progression of my HS is definitely stress induced. I have other skin conditions too but this is the worst because the other stuff I can at least cover and it won't be painful. I am definitely going to check into the Hibiclean, is it OTC?
tangerinebear
tangerinebear

yes, hibiclens is over the counter; you can get it at Walmart, Walgreens, CVS....tangerinebear xo
deleted_user
deleted_user

I've been battling HS for 6 years now. I believe it is stress induced. I smoke, but I'm going to be switching to Blu electronic cigs so hopefully I'll notice a difference. I'm drinking a lot of kefir smoothies and culturing my own, hoping that will make a difference too. I have gotten some relief with turmeric but ran out and $$ situation is not so good right now so haven't bought more. I'm trying to soak 3 times a week in epsom salts which is supposed to draw out infection. It does make me feel better and epsom salts is very inexpensive. I just ran acoss the website for Emuaid and I'd like to know what you think of it. It's quite costly, but could be well worth it. I'm considering silver colloid as a liquid supplement, and I'm reordering some "Sangre de Drago" ointment from Natures Topicals online which has really helped in the past, $6.00 for 1 ounce. http://www.naturestopicals.com/index.php?pageControl=productdetails&prodid=182

Please let me know if Emuaid is helping. Welcome to the HS board. You'll find many, many wonderful people here.
Leslie
deleted_user
deleted_user

Emuaid is VERY expensive. I paid $70 for it, it including 2 day air shipping, it arrived at my door less than 24 hours later. I haven't been using it as often as I should (you're supposed to apply it at least 2x a day), but when I do use it, I am noticing a difference. I'm also using an antiseptic wash called Hibiclens and I think that really plays a part in it, as well. So I guess I would recommend both.
deleted_user
deleted_user

Thanks Ms. Carter for your prompt reply. Good luck with your treatment regimen.
Leslie