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,...

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rituals 09/06/2013

I'm currently typinh this with one hand as I'm in far too much pain to use the other. This shitty disease has ruined my life. I want to go to sleep right now, but chances are I'm just going to lie there writhing in bed, unable to find a position to rest my left arm without causing immense pain, even though I'm on painkillers. I'm 20 years old male and have been living with HS for about 4 years now, and it seems like the boils are just getting worse. They appear quicker and bigger and cause much more pain. I can't even lift my arm to see what must surely be a huge cyst/boil in my armpit. because moving the arm causes so much pain.

I remember reading somewhere that HS is at its worst about 10 years after onset of symptoms. I can't fucking imagine how horrible that must be, considering the pain I'm in right now, and the fact that I've already had a pilodinal cyst for that lasted about 3 years. After lots of antibiotics and two times surgery, the second one leaving my upper buttocks scarred and disfigured, the fucker finally disappeared. I don't have to worry about pus and blood staining my under wear every single day anymore, but the increase in pain makes up for that.

I just needed to vent really badly. I don't really have anybody to talk about this shitty disease, so I'm spilling my anger into this post, which took a ton of time to write with 1 hand.

HSchich 09/06/2013

rituals I am sorry you're going through this pain. I remember those dreadful ridiculous painful boils I'd get in my armpits. Like you, I used to stay up unable to sleep due to the pain. I'd get them lanced only to be have a huge hole twice as big and boil returning a few months later. HS is a sad and depressing disease. I had surgery on my armpits and no longer suffer with it. I do have pilodinal cyst which leaks from time to time but it's as bad. But I know how you feel. I wish you fast recovery. HS sucks so bad!

HSchich 09/06/2013

it's not as bad** (typo)

RonFetty 09/06/2013

I am sorry you too, have this terrible disease. It does make one want to give up. I go with quite a lot little sleep nights as well. Venting is healthy, and great for the stress level. Most painkiller (as I've said), don't work at all, or very well for me. The bad thing is hard to get much sympathy from employers, friends, or relatives. I feel once in awhile coming here does help. We know what we're dealing with on a daily basis. A doctor told me exercise is outta the question. He doesn't want to have me sweating. Now I am overweight, and going to go on a stricter diet. At 55 this'll be hard.

rituals 09/07/2013

Thanks for the words guys. It feels great to be able to talk to this with others who have gone through the same, or maybe (probably) even worse.
HShich I'm curious as to what kind of surgery you've had in your armpits, did they leave an open wound to heal from the bottom up? That's what they did to my pilodinal cyst, and even though scar tissue aftermath looks horrible, it's the only thing that actually helped.

"Venting is healthy, and great for the stress level." Indeed, it seems. I felt emotionally relieved after writing that post.

"The bad thing is hard to get much sympathy from employers, friends, or relatives." Yeah. How are you supposed to tell people that you sometimes look a bit like a plague victim without freaking them out?

deleted_user 09/08/2013

Don't lose hope mate..

rituals 09/08/2013

I got surgery for it earlier today, and I'm already very relieved. I still have pain, because there's an open wound in my armpit, but it's definitely not as bad as it was only yesterday.
Something interesting though: before I went home, a doctor came to me and told I should get my regular doctor to take a sample from my nose, because apparently some bacteria hiding in the nose can cause boils like this in the armpits and groin.

respectful 09/08/2013

I understand completely....it's been 35 years for me....plagued on both sides of my groin, buttocks and inner/outer Labia, I wonder where it will go next....I as well am on Painkillers(Hydrocodone) which is getting harder and harder to get due to longterm backorder...Vent away...sometimes I walk down the hall of my house screaming at my HS to Leave me the hell alone...don't get me started...

HSchich 09/09/2013

rituals,

the doctor did not leave an open wound. He removed the HS and stitched it in one straight line. After 3 weeks the stitches were removed.

deleted_user 09/12/2013

I have hs and I had both arm pits removed its a very painful surgery it took awhile for the healing I had the surgery about a year ago and I haven't had any more outbreaks under my arms and I have the bad case of hs I have surgeries every month sometimes 3-4 Times a month I'm 22 and its sad I already am getting put on disability for it in May they did surgery in 9 different places on my body for hs in the same day. But I hope you get better soon maybe you can talk to your Dr. About that surgery

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