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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feeek 10/17/2017

hi all - I'm 25 and was recently diagnosed with HS. I've had a small pea-sized lump under my armpit for 10- 12 years, never inflamed or irritated, to the point where I always forget I have it. A few days ago, it became inflamed and doubled in size for the first time, and I went straight to a general surgeon for the pain. He took one look at it and automatically diagnosed me with HS. Didn't really explain the disease or his thought process and gave me Clindamycin for 8 days as well as Dalacin T liquid. Well five days later, and the lump was still inflamed and quite painful. I decided to see another general surgeon for a second opinion, and from the get go, she said it definitely wasn't HS and that it was a sebaceous cyst that needed to be drained and then surgically removed. I asked her if it could possibly be a very mild case of H S (which is why she feels it isn't HS) but she said she's seen so many cases and it usually looks pretty bad and distinct.

My queation is - if HS is so "rare" or usually confused for something else, how could the surgeon immediately decide it was HS? What could possibly lead him to jumping to that conclusion when it's just a cyst?

I've had this lump for as long as I can remember, it's never bothered me. Can HS stage 1 just start as a lump and stay dormant for years before it gets inflamed? I've read online that it can start as a lump; but mine has been there for so many years. It didn't just pop up and then get inflamed.

Im confused and stressed out and can't seem to get an answer from anyone. If it's HS, then at least it's confirmed and i can move on and think about treatment. But if it isn't, then I also just need to get it drained asap.

Im sorry for the lengthy post, but I've just exhausted all my options in terms of figuring out what this is. I have a third appointment with a dermatologist next week but my GS wants to drain it before that.

Thank you so much for anyone who responds!

feeek 10/17/2017

I'd also like to mention that the pain isn't severe. It hurts, yes, but it's mostly uncomfortable. From what I've read, even mild HS is very painful, messy and has an odour. None of that applies to me. All I've got is an inflamed lump that hurts occasionally, and there's a random groove in my skin that appeared under it.

tbase 10/18/2017

Hi there ! I will tell you this I use to have lumps as a child it will go and come but never anything up on till this summer it became bigger and bigger and I started having boils! Then I found out it was HS my lumps hurt too sometimes but as a kid they didn't hurt! I will tell you this I don't think surgery is a good opinion. Doctors don't really know what they are dealing with and I have seen some cases after surgery that it comes back

SammBamm327 10/19/2017

Hello! I also have HS under both of my arms. I deal with it on a daily basis and it sucks! My first flare up was when I was about 19, and I am now 25. I was diagnosed when I was 22 or 23, and it took moving to another state to get that diagnosis. When It first, I would get cysts that were the size of golf balls under my arms and it was so incredibly painful. I would have to have them lanced in the ER and then packed to drain. I have so many ugly scars under my arms that I no longer wear sleeveless shirts. I am not a doctor at all, but it sounds like yours is just a normal cyst. (Especially if it’s been there for 10+ years.) I would go to the dermatologist though. I’ve seen 2 and they know a lot more than doctors do, being that it’s specifically to do with a skin disease. I would maybe contact your dermatologist and ask them if they recommend the GS to drain it or if they would be able to get a better diagnosis with it not drained.

As for surgery, I would not completely rule it out. I’ve read so many posts saying that the results were amazing and the pain was nothing near what a flare up was. I would say that a GS would know more than a regular doctor would, there is a reason they are able to preform surgery on people.

SammBamm327 10/19/2017

I am actually considering having surgery on my left underarm. I’ve been dealing with a flare up that consists of 3 separate wounds. They’ve been there since the beginning of July and will not heal. I’m on 2 antibiotics that I take twice daily. I hate being dependent on them, and I think taking the tracks out will help me tremendously.

If you’re sure it is HS, have them take a culture of the cyst. It could possibly be mrsa. That’s what they originally thought I had. But get multiple opinions. My doctor in California told me it was due to stress, almost like an ulser, and boy was she wrong!!!!

I’ve been suffering from this for 6 years, and I really hope that you do not have it. HS is a nasty, crippling, and horrible disease. I would not wish this upon my worst enemy. Good luck!! ❤️

pcar 10/20/2017

HS diagnosis is far from an exact science, especially if you have other conditions or aren't severe. Specialists see what they expect to see. I'm not sure what your previous dermatology appointments resulted in but I didn't know I had hs. I had "bad skin", cystic acne, folliculisis all "normal crap" at one point I developed HS- open sores that wouldn't heal, horrid odor, no pain but where the HS was (started in armpits) my skin was so eaten away it looked like a horror movie zombie/ corpse. Every case of HS is unique some people are in terrible pain, others not. Long story- but anyway the incompetent PCP I was seeing knew it was HS, which I had never heard of (assumed it was cystic acne, which I also had) but never referred me to a derm.

By the time I saw the nurse practitioner (no surprise she was more competent than the dr I was so darn bad a surgeon said I was too severe for him to help and referred me to another surgeon who was ready to slice and dice/ skin grafts and the whole thing. Horrified, I insisted on going back to my derm first who got the staph under control and the HS. With antitiotics, specifically amoxicillin. She also informed me surgery is often a fail because the HS simply grows around where it was "removed". Years later as I went into remission for other reasons I had the skin removed, years later when I developed an outbreak it did exactly what she said. It also can "move" from one area, like the armpits to the groin, anus etc. It's more of a systemic condition if you ask me.

Either way I would not jump the gun to get surgery, not for 1 cyst that may be just that. See another dermatologist if the one you saw you weren't satisfied with.

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