Hidradenitis Suppurativa Sufferers?

I have hidradenitis suppurativa and have had it since I was about 16 years old.. so about 12 years. It was probably its' worst when I was my heaviest about 4 years ago. I still have it and it flares up sometimes. Anyone else deal with this? Any insight on if it went away or into remission after a lot of weight loss? Or worse issues with the extra skin? Just looking for feedback, if anyone has any at all. I know it isn't the most common condition. Thanks.

You might want to do a search on it at the upper right part of the page.

Ok, will do. Thanks.

Wow, I am so surprised to see this post! A good friend of mine has this condition -- I could not have told you what it was called if you had asked, but I recognized it when i saw it -- but other than her, I have never heard of it elsewhere! Based on what I know from her, the affected areas (for her it is mostly in her armpits and around the tops of her legs (uh... all the way around where her legs join the rest of her body...)) are areas where the oil glands and/or hair follicles can easily become blocked just because of the proximity of the body areas and where sweat can accumulate (which contributes to infection of the bumps), so it would make perfect sense to me that being overweight would make it worse and losing weight would help it, since all of those areas now have less pressure on them and can "breathe" more.

My friend uses a prescription powder and takes some kind of a pill for it (I don't remember what the pill does), but she also had surgery to have the hair follicles amd sweat glands removed from her armpits because the outbreaks there were getting infected repeatedly. That is why I found out she had the condition.... I mentioned that the plastic surgeon doing my arm lift would be removing the hair and sweat glands from my armpits during surgery!

I don't know how it would affect excess skin after losing weight (or if it would impact having PS to remove the skin). Apparently this condition can be very troublesome so I am glad yours has improved since surgery.

Lora

 Hi - I also have hidradenitis suppurativa.  Mine has been in remission for a couple of years.  It was at it's worse several years ago when I was pregnant and for a couple years after that.  I had to have several surgeries to remove the sweat glands from my underarms and groin areas, because they were chronically infected and wouldn't heal.  I'm pre-op, so I can't comment on how the condition is affected post-op, but I'm assuming it would benefit from weight loss.  My case seems to flare up when I'm under severe stress.  

 I have very mild case of this, stress usually causes more flair ups.  My surgeon said that sometimes this can get worse, because once you start shrinking, the skin will lay on itself which may cause more irritation.  For me it's not related to sweat because i'm always freezing and not much of a sweating person. 

He did say with me, it will probably make my plastics covered because of the issue if it develops worse with weight loss (I'm in canada and some plastics are covered, pann and batwing, but thighs and breasts are not, some of my spots are in those areas)

Gypsy

 Hi there,
   I have this condition in underarms and groin.  About 6months after RNY I finally had to have my arms operated on to remove the diseased tissue.  My biggest regret is that I didn't talk to the surgeon about removing the excess skin while he was at it :(  
The condition was worsened for me by the weight loss, 100-150lbs at the time of the Hidradenitis surgery.  I'm a teacher and it got to the point I couldn't raise my arm above the point of my chest/shoulders to write on the board.  It is also worsened in my groin, but the surgery was uncomfortable enough that I am just dealing with the groin flair ups for now.  
Good luck!

I'm at 2 year mark and mine is in remission right now.  The times that is really flares up is when I'm losing and when the weather gets really hot and humid. It also depends on if there are any other issues along with HS. 

I also have had hidradenitis since about age 14...16 years. While I remember it being bad when I was heavier, it seems now, with so much extra skin, that new areas are becoming breeding grounds for new abcesses, specifically my buttocks and thighs (and the crease where they meet), while areas such as my underarms and under my breasts have improved quite a bit.
On a positive note, I have met with a plastic surgeon, and they believe that removing the excess skin will most likely be covered by insurance for medical necessity, as I have a long documented history of the problem. Granted, the scarring will be bad, and frankly I don't care, they actually believe that the extra skin will make getting "rid" of the problem skin easier. I have read various HS surgery testimonials, some agree it works, others say it returns, however, I am optimistic that without the skin folds I may see some relief. This disease really impacts my quality of life negatively, and I am hopeful this will help.

Hi there -

I've been dealing with this for about 12 years or so as well.  I've always been heavy and mine started in the groin area after shaving "down there" with a razor.  At times I had several "channels" (as my doctor referred to them" active at one time.  I don't know about them improving with weightloss because from what I understand this isn't something only large people can aquire. 

This is what WEBMD says: Hidradenitis suppurativa is a chronic, pus-producing (suppurative), scarring (cicatricial) disease process that occurs due to obstruction of hair follicles and secondary infection and inflammation of certain sweat glands (apocrine glands), particularly those under the arms (axillae) or within the anal/genital (anogenital) region. The disease is characterized by the development of recurrent, boil-like nodular lesions and deep pus-containing pockets of infection (abscesses) that may eventually rupture through the skin. Healing of affected areas is typically associated with progressive scarring (fibrosis).

The specific underlying cause of hidradenitis suppurativa is unknown.

I was instructed by my dermatologist to stop using all deodorant and powder products in the areas effected (which at the time was only my groin area) and to use a surgical wash called "Hibiclens" that you can get over the counter at your local pharmacy.  It's really runny, I think it contains iodine because it's really red too, but smells so nice.  I would wash with this every day and then stand in front of a fan to make sure I was really dry before getting dressed.  In a few weeks time after the last one broke and was pretty much cleared up, I finished the Hibiclens and to this day will ONLY buy antibacterial body washes or bar soaps, nothing with moisturizers or lotions and I still don't use any deodorants or powders, just make sure I'm completely dry.  I haven't had any problems (knock on wood) in the last few years.  I believe if you have ones that are bad enough a doctor can prescribe a strong antibiotic to help kill the bacteria but I would say to speak to a dermatologist about how to handle them going forward.

Good luck to you!!