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 friends,
I would like to share my experience with this horrible condition. I have HS on both armpits and a little on my groin area. So now that some abscess have ruptured, I notice that now I have holes left behind. I'm not going to lie, I really got freaked out when I seen them bcuz I know once you have an open "wound" I automatically thought of infections. My dermatologist told me "unfortunately is part of this condition, you just have to learn how to cope and deal with it". I cant believe how this holes remain open and there constantly draining, at times i have lots of blood coming out and it scares me. I also have a lot of itching on this areas and I always have gauze to protect the holes.
Currently my dermatologist has me on a infusion treatment, I'm also taking lots of vitamins & herbal supplements, drinking lots of water, staying active in the gym, GLUTEN free as well.
And since I have open wounds, my dermatologist also prescribe me Silver Sulfadiazine cream and I love it, please share your experience... I would love to hear from you! God Bless : )
I would like to share my experience with this horrible condition. I have HS on both armpits and a little on my groin area. So now that some abscess have ruptured, I notice that now I have holes left behind. I'm not going to lie, I really got freaked out when I seen them bcuz I know once you have an open "wound" I automatically thought of infections. My dermatologist told me "unfortunately is part of this condition, you just have to learn how to cope and deal with it". I cant believe how this holes remain open and there constantly draining, at times i have lots of blood coming out and it scares me. I also have a lot of itching on this areas and I always have gauze to protect the holes.
Currently my dermatologist has me on a infusion treatment, I'm also taking lots of vitamins & herbal supplements, drinking lots of water, staying active in the gym, GLUTEN free as well.
And since I have open wounds, my dermatologist also prescribe me Silver Sulfadiazine cream and I love it, please share your experience... I would love to hear from you! God Bless : )
Yes...I too...as the one on my a** is just inches from my rectum, so I am SO Scared to be constipated! Sometimes it bleeds as though I was being murdered! I always protect my open wounds with gauze/tape. But sometimes it doesn't work. And the ones in my labia, I can't even pee without holding a towel up to it, and I always feel like it throbs, and burns and leaks. Me, too all that and nothing. Gluten free doesn't do it for me, and I have been drinking a ton of water too...Yes...Silver Sulfadiazine was my "go to" cream for nearly 10 years....I applied it every day, Unfortunately, it takes a long time for them to close. I only had success in my groin.
Good Luck to you...it may work for your armpits too.
Thanks for posting your experience and pray to God that your doing much better... I cant believe it, holes for 35 years... how do you manage.. why do you think its takes for ever to close? Are you taking any medications?
Sometimes I have my good and bad days with this debilitating condition, i have had my bad days at work cuz people just don't understand. There so inconsiderate!
I don't know why they take forever to close but no, I am not on any medication as I find that it just doesn't help. I was once put on Hydrocodone for pain, but he stopped giving it to me. Thanks Doc. Pain is better than pain meds....NOT.
I am just grateful that I have a husband who dresses my wounds as I can't reach them myself. I hope that the Silver cream continues to work for you...Yes. People can truly be inconsiderate. It's hard to make people understand.
Hope you feel better T !!!
This horrible condition happen to me when I turn 30, I'm 33 now.. I notice the first abscess on my right armpit from there it just went back and forth from the right to the left. And like you I just started getting the holes after an abscess popped. I have never had this happen. But yeah, this sucks... when my dermatologist told me there's nothing or no medicine that can help me with the holes i got discourage cuz it just seems impossible that were able to walk around with holes on our body, its crazy!! I highly recommend Silver Sulfadiazine, its a like a layer of protection, for some reason i feels better when i put in on.
I salute you for your strength and endurance... I've only had this condition a couple of years. And yes, now i have boxes of gauze and tape as well... we have made J&J richer.lol.. I just wish they made gauze with an adhesive strip.. like a big band aid. When i went to go see the plastic surgeon that's what they use to protect both armpits, it felt good and secured.lol. I'm so happy you have a wonderful husband that's there for you, his a blessing!! But why did the Dr stop giving you pain meds? That's so stupid, especially with this condition bcuz its constant pain.
Fistulas... I will bring that up to my dermatologist on my next appointment. Its crazy how Doctors don't know or haven't heard of this condition and how there's no cure or don't know why it happens. I have found myself doing lots of research trying to figure out WHY. Seeing holes on your body is a scary thing especially when lots of blood starts coming out. I've also been taking Lysine, im willing to try anything.lol. How do you deal with the holes?
I was told I need surgery to make sure they haven't opened into my bladder and other parts of my body. I had a huge one once on my hysterectomy scar and I had to have outpatient surgery to repair it. SO far I have seen 3 drs and no one wants to do the procedure so I am still looking for a new surgeon but in the meantime I am exhausted from being poked and prodded and taking a break lol. They don't SEEM to be harming me now and I have my fingers crossed but it still is scary have 9 holes on my body ...most very very close to my very private spots. I just wash extremely well and if oozing or bleeding put triple antibiotic cream on them. It seems this is quite common with HS. Hopefully yours and mine are BLIND fistulas (you can look it up..there are diff types of fistulas) and will eventually close but I would def make sure if possible and talk to your dr. Best of luck and please keep me updated!
For the one in my groin area, the only way I got it to heal was exposing it to as much air as possible and keeping it as dry as possible. So I would blow dry it on cool after a shower, to make sure it is completely dry. And then do the same thing when I got home from work. The itchy feeling is actually skin irritation and a secondary yeast infection from being damp all the time (at least mine was).
Also I had to take zinc and Tumeric for months and months and stop eating gluten and dairy. That's what I'm doing with the one under my arm now. It is taking longer though because I didn't realize they had changed my deoderant's formula and it was causing a reaction.
Also I take minocyclene every day, and use topical clindimyacin on it.
I will start doing that every time i get home from work, and it makes sense as well... let it dry so it will close. But I'm also taking zinc and was taking turmeric but I stop with the turmeric bcuz after about 1 month of taking it I notice both of my armpits started getting somewhat worse, like they started draining more and didn't seem right.. Did you have any reaction to Turmeric at all?