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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What is this really?

ariesgurl
ariesgurl
Ive been doing a lot of research on the potential causes of HS and I think all theories out there are BS. Unless this a condition you got as soon as you hit puberty it CANT be a disease/malfunction of the sweat glands, hair folicles, skin tissue etc. It doesnt make sense for those of us who got HS long after hitting puberty. Personally, I started puberty at age 12 and didnt experience HS until I was 24 or 25! So for TWELVE years my glands, hair folicles, and skin were all working fine and NORMAL so what happened? Some studies say that HS is caused by underdeveloped glands, if so, why wasnt I afflicted as soon as my glands were activated by puberty?? During my disease free 12 years I exercised, sweated, ate crap, drank, smoked, did all the things a normal teenage/young adult does and didnt experience a thing. The only thing that DID change at the age of 24/25 was that I put on a few pounds, started BCP's and became sexually active. The only thing that really makes sense in my case is hormones so if that is the case this disease should be easily reversed through hormone therapy no? but that also does NOT work. Ive been reading a lot about astrology lately and have found numerous posts/discussions on how skin conditions manifest because of buried emotions/anger/self hate/no outlet for energy. I wonder if this is true...Could liberating yourself of your inner conflicts that are festering really "cure" your disease? A question for those of you suffering from HS, do you have a lot of inner anger/frustration? Stuff that isnt related to your disease?
deleted_user
deleted_user
You hit the nail on the head. I too didn't have a problem during puberty, and it was a difficult puberty. I didn't get my first lesion until I was about 19 or 20. Around the time I was stressed out and angry, and we were having a lot of family problems. Life is stressful and I'm sure I have some buried emotions. It's pretty crazy what stress can do that you don't even realize. Maybe you're on to something? But first things first, take yourself to a dermatologist and demand a biopsy to rule out anything more serious. I went to about 3 doctors and they all said sweat glands without running one damn test!!! I finally went to a new doctor and I'm awaiting results of a biopsy. So if that doesn't show anything out of the ordinary then perhaps I should try getting all my stress out and maybe even doing the gluten free diet that people are talking about on here. But one thing is for sure, there is something not right when a problem just starts out of the blue with no medical explanation. It sucks!!!!!
deleted_user
deleted_user
In your research you may have come across the theory that HS is genetic. I believe that this is the case. Although I am the only person in my immediate family to have HS I do have a 2nd cousin who has been diagnosed with HS as well.
I believe that from conception HS is predisposed to us, although some do not manifest it while others do. I can not figure out why, and neither can anyone else from what I have read. I know that my brothers (2) and my sister and I ALL lived in the same home with the same parents, ate the same food, washed with the same type of soap, drank the same drinks, had our laundry washed together.. you name it and it was ALL exactly the same.. yet at age 11 I developed my first HS cyst.
With me developing HS at age 11, this sort of shoots down your hypothesis that HS is caused by stress, or pent up anger.. crap at age 11 I had the world by the tail and I was never mad at anyone. I did not drink or smoke, nor was I fat.. so those ideas that are floating around out there don't fit me either.
I don't know WHY we manifest HS.. and I am not so sure they will ever be able to tell us with absolute certainty.
I do know that stress is a HUGE factor in flares.. if I get stressed, or upset, I am essentially guaranteed a flare.
Hopefully some day a scientist will be able to provide us with a reliable treatment, if not a cure.
HS affects people differently too... some stay stage 1 forever, while others zoom straight to stage 3 lightning fast. This is truly a horrible disease.
deleted_user
deleted_user
i developed HS at age 12.. puberty(hormones)
my mom tells me my dad has it... (genes)
when i was pregnant it went away (hormones)
when im hot or stressed it flares up (stress)
when i lose/gain weight it clears/flares up (weight/diet)
... so idk.. its probably genetic with a twist of enviornmental and hormonal influences... i wish some doctor would get on it and give us some answers
respectful
respectful
This is going to sound stupid, but mine started at 10 years old AFTER I fell down the stairs with a bowl of apples in my hand. I thought I busted my tailbone, but it later turned into a draining cyst that doctor's didn't tell me was HS. While it healed over, (No surgery needed) It came back in my 20's and 30's. I now have it in my groin, and inner labia...
With 30 pages worht of food allergies, I don't have any Gluten/Dairy/or Eggs in me, so I have no idea why I still suffer. I thought about genetics as well but I am the only "Lucky" one in the family who has it. The only thing I do know is that my wounds hurt even more 1 to 2 weeks before my Menstral Cycle, I am in agony. It seems Hormonal to me. But not even my own gyneclogist can tell me. My periods have stopped due to Tamoxifen and I am in horrible pain because of it. Something's gotta give. It's back to the gynecologist I go.