Skin Condition that may affect Cysters

I have PCOS. I was also just diagnosed with Hidradenitis Suppurativa (inverse acne). Since a high percentage of people diagnosed with this condition also suffer from obesity and PCOS, I thought I should pass this info on to you Cysters in case some of you were suffering from this painful and embarassing affliction undiagnosed or misdiagnosed as regular acne. The condition is relatively rare, but may be more common than documented because many people do not seek treatment to due its personal nature. This condition is NOT contagious - it's causes are unknown, but you CANNOT communicate it to others!! I have been misdiagnosed several times: regular acne, genital warts, yeast and even herpes -- even though HS lesions look and act completely different!!  Hidradenitis Suppurativa, HS, is a chronic and incurable skin condition, affecting the sweat glands and hair follicles, and is identified by recurrent lesions and boils, most commonly found in the armpit and groin and under the breasts. These lesions may appear as blackheads that progress into deep, painful boils which often rupture and seep, leaving crater-like pits and tunneling scar tissue (look similar to mole/gopher trails). The lesions normally take several weeks to heal, and often return in the same general area multiple times. More information is available from the Mayo Clinic and other online sources. It is normally not life threatening, but can lead to infection and cellulitis (which can be). If you think you may have this condition, you should consult your PCP or Dermatologist to discuss it. The condition is somewhat rare, so your doctors may not be aware of it or its symptoms. Have them research it - this condition is painful and can be debilitating if it progresses to later stages. There is no cure, and conventional acne treatments are only marginally effective - education and monitoring is your best choice. I hope this info helps someone who might be suffering alone. You are not the only one! -Jennine

Hi jennine,             I also have Hidradenitis Suppurativa. I have had it since childhood. I cant even figure out where to start.  So~oooo here goes.                                    It all started when I was a child so my mother tells me. She thought that the red boils I was getting was from playing in the sandbox and from diapers. I started seeing the best dermatologists that were around in Pittsburgh. They all said it was severe acne. My moms questions was on a 3 year old????? anyways, it progressed into my later childhood years and into my early teens. I got my period early when I was 10. Soon after this everything started going haywire. I was getting my periods for 1 month at a time and then not again for 5 months and then 1 month at a time and so on. That's when they did a study for PCOS. Keep in mind I am still getting these terrible bumps on my butt, armpits, stomach, thighs and breasts. It was so severe that to sit comfortalbly in school I had to use a special chair.  After being on what seemed like hundreds of different antibiotics (including Acutane) they finally diagnosed me when I was 20 years old. I started seeing another specialist in pittsburgh because the bumps in my armpits were getting so bad. He said diet and exercise will cure this. Well, Yes, I think diet has something to do with it but I was convinced that diet wasnt the answer to everything. I wasnt overweight when I started to get these outbreaks when I was 3 so I knew there has to be another link. Oh, and I did loose about 45 pounds on my own when I was told to change my diet and it didnt work. MY HS got so bad about 1 year ago that I had to have both armpits packed with gauze each day. It hurt so~oo bad.  I went to see another specialist a wound care doctor and she told me that I could keep on packing these huge boils everyday or I could go ahead and get a surgery. Now, the surgery was a very rough road. They took a skin graft from my leg and then excised my whole armpit area and put the skin graft in my armpit. I had many months of physical therapy and it was not an easy road. My armpit looks like something chewed it and spit it out. But, I dont have anymore hs outbreaks in my armpit. No more pain from these killer bumps at least in this one spot.

               Since I have had my RNY the outbreaks have really lessend. I still get them but they are less. I wouldnt do the skin graft surgery anywhere else on my body unless it got to the point that my armpit was at. HS is not fun, it hurts, it scars, it made me feel like crap and embarassed. There has been numerous times that I couldnt wear clothes or I had to put bandaides  everywhere on my body just so I wouldnt have an accident and have a boil break. It has been a long and terrible road for me. I have read that there is a link between obesity, PCOS and HS. I can only hope that there will be a cure one day in our futures.                                                      Jenn

Jenn, You have my sympathies. I cannot imagine having to go through what you have all your life. I guess I'm lucky because I'm only mildly in stage 2. I had the first boil in my groin around 14 - I was on the swom team at the time and waxing pretty aggressively for the racing suit. I figured it was just an ingrown hair and didn't worry much about it. Through my teens and 20's I would get one somewhere every couple of months. But for the last 5 years, at least, I always have at least one somewhere - usually the new crops up about the same time the old one stops seeping. And the boils have gotten worse, once or twice a year I get two or three that tunnel together.  I've had lesions explode in my bra during meetings. I've had them seep through my pants. I've had to buy a new dress for special occasions at the last minute because a boil raised in my armpit so Icouldn't go strappy. I've been caught outside the house and had to pack/cover my boils with sanitary napkins because that was the only available. I've had my glasses get glued to seeping lesions behind my ears. I had to stand through an entire awards ceremony because I had a huge lesion under my butt cheek that was just about ready to blow. It's a painful way to live. I have heard that losing weight helps with HS both hormonally and by reducing the areas where skin rubs and gets sweaty. Of coures, there's a Catch 22 -- since it's a problem with sweat glands and hair follicles, anything that makes you hot and sweaty (umm, like exercising to lose weight) tends to make your outbreaks worse. Shaving and waxing is evil for coarse hair, like your pubes, because ingrowns make your outbreaks worse. And "the cure" - the excisions and skin graphs for stage 3 lesions - helps for awhile, but there are no guarantees they won't come back in that area.  I hope the medical community spends some more time researching the effectiveness of laser treatments for HS. Logically, you'd think that laser hair removal would help, and so would laser or med treatments that deactivate the sweat glands. I can only pray that when I do lose weight, if I get skin flaps, that my boils don't get worse and that my INS will pay for "lift" plastics before I have serious complications from this condition. Jennine

I have a good friend that had this severe. Her doc ended up taking her into surgery and taking off layers of skin where hair growth is 'down yonder' as a preventative measure....hers was that bad.

I've had a few breakouts as well, but nothing that major and nothing in a few months (knock on wood!)

WOW !  Thank you so much for this information and sharing your stories. I dont think i have this but im still glad to be aware of it .  This and my other symptoms of obesity is why im so glad and looking forward to having my RNY.  Thanks again for making your PCOS sisters aware.

ARG!! I asked my doc about this YEARS AGO when I was first trying to get a diagnosis YN as to why I was gaining so much weight. I was ashamed for him to do an exam because of the bumps, small and large. He told me that some people just have oily skin, and that was that.  Thanks for the info about this! Mine aren't *that* bad, but occasionally I do get them where I am pretty uncomfortable when sitting or walking. Now I know what to ask my doc about! THANKS!!! :)