ok so I'm confused... HS or not?

tukeetukee · 05-19-2008, 10:29 PM

I started getting BIG, DEEP bumps on my underarms and groin area that feel like marbles under the skin and look like HUGE zits on the outside. So I went to the dermatologist for it (this was before I was dxed with PCOS but I suspected it) and he said it was folliculitis and gave me some topical acne medications. They DIDN'T work. Then I was dxed with PCOS and found out that HS is a skin disease associated with PCOS that affects the underarms, groin and sometimes the breasts, and acne medication doesn't usually work for it... so I thought maybe this was it.. so I went back to the dermatologist and asked him if this COULD BE HS and he gave me a topical corticosteriod that he said "would knock out whatever it was" and it worked so I just kind of assumed it was HS since he never said "Oh definately not" and the meds worked when the boils appeared. But now I'm looking up HS on google images and it doesn't look quite like what I have.. mine isn't as bad. The scars on the pics look REALLY deep like moon craters and mine are quite flat... So i wonder.. do I really have HS? or are the scars just not very bad because I use that corticosteriod cream to "knock out" the boils as soon as I see Im starting to get one? Should I discuss it with my gyno tomorrow?

tukeetukee · 05-20-2008, 02:52 AM

oh, i also wanted to ask.. assuming this IS HS... does shaving exacerbate the problem or does it maybe help a little? or does it just not matter?

mahjab · 05-20-2008, 03:27 AM

It sounds like it could be HS. I haven't officially been diagnosed with it but I think I have this too, except i get this on my thighs and calves and not usually in the groin and none in the armpits. My derm also said it was folliclulitis or whatever it's called. My big ones get to be about the size of peas and the small ones look like blackheads.

I also looked at the pics online and I think those are very severe cases. Milder cases are more common probably. Mine also do not look near as bad and I pray that it won't get worse.

If I'm not mistakes, HS is an ingrown hair that gets inflamed? That's what mine always are. When it heals I usually pick the hair out of it.

tukeetukee · 05-20-2008, 03:34 AM

information on HS is severely lacking.. but from what i can tell, it's quite like an inflamed hair follicle... i dont know for sure though.

Eva37 · 05-20-2008, 10:20 AM

ive had hs sibce i was about 12-13. Most of mine are under the skin - so you can see a raised 'lump' but nothing else.
eva

Jess1216 · 05-20-2008, 12:48 PM

I sounds like you very well could have HS to me, but maybe not as severe a case as some of the others you've been looking at.

I do have HS. Sometimes I'll get flare ups and get a bunch at the same time, other times there will be months where I won't really have anything. Basically my understanding of what it is, is that people start to get them around puberty. Apocrine glands function as sweat glands & they are anywhere you have hair but are concentrated mainly in the armpits & groin area. People with HS have a problem with sweat/oils backing up in the glands & they don't get released like they do in "normal" people (not meaning to be offensive, just didn't know how else to word it! ). Because it's not released it backs up into surrounding tissue & causes issues.

Some treatments may work for it but it doesn't necessarily make the condition go away. Like I said, there have been months on end where I didn't have anything...and then they eventually come back. If the topical cream helped you & there weren't horrific side effects to your health or anything, then I'd use it to help with a flare up when I needed to.

For me, shaving doesn't help or make it worse. The only thing that really bothers them is if it's an open one (sorry--gross) and I shave over it...that doesn't feel too good. Or if the area is really inflamed or hurts to even touch it I won't shave over it.

My scars sounds like yours mostly. I have some very small moon crater looking ones but mine mostly cause browish-purple-ish scars.

tukeetukee · 05-21-2008, 12:34 AM

I went to my gyno today and decided to let him have a look at my "spots" to see if he thought they were HS. I said "I have some spots that are really lartge and painful and they get to be huge lumps under my skin.. dermatologist told me a year ago that it was folliculitis and.." and he cuts me off and says "yes, it's folliculitis". I was kind of stunned that he cut me off so rudely, but also that he wouldn't even let me show him the things on my breasts. I told him I thought it might be mild HS and he says "HS is a whole diferent animal.. if you had HS, you would be horribly disfigured and unable to function." He says this all without even LOOKING at the huge abcesses on my boobs. wth?? anyway.. he said to use antibacterial soap (which i have used FOREVER) and it'll resolve itself.... I think doctors that think they know everything are jerks. ugh

mahjab · 05-21-2008, 01:11 AM

Hmmm....you know I don't think you can do much about HS unless you get your hormones under control. Have you tried birth control? I was also told by a doc to use antibacterial soap. Useless.

tukeetukee · 05-21-2008, 01:12 AM

I'm on the pill, spiro, and metformin, which from what i read, is what you need to be on to control HS... but it's not helping a whole heck of a lot.

mahjab · 05-21-2008, 02:16 AM

It could be folliculits then...what about antibiotics?

tukeetukee · 05-21-2008, 02:26 AM

oral or topical?

Sally888 · 10-04-2008, 05:43 PM

Hi there, Ive had pcos for about 6 years and now have a 2 year old, shortly after I had him I started to get the bumps on my arms and in my groin, under my breasts underarms etc. Sometimes they get infected and are very painful. I also get a lot under my jaw line, sometimes in my hair.. basically wherever.
Sometimes its white stuff, sometimes its a hard white thing.
I've asked about 4 different dr's and none really seem to care, on intern said it was folliculitis and it will eventually go away. I've tried everything and the really sad part is now my husband gets them because it is contagious if you share bed sheets or towels.
I've been having a really hard time dealing with depression and this skin stuff doesnt make it any better. It really whithers my self image and I feel horrible my husband has it and the dr's wont help. Not only do I have to trim my facial hair I have to deal with this too. Sigh.
Ive tried cortisones
nizoral
using a pouf
anti pimple lotions
and about 10 others things.
Ive heard stuff with retinol a may help anyone have any luck with that?
Sorry if I'm replying to an old thread. Looking for advice or words of wisdom.