What is Hidradenitis Suppurativa
Hidradenitis suppurativa or HS is a skin disease that affects areas bearing apocrine sweat glands and hair follicles; such as the underarms, groin and buttocks, and under the breas...
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Well I still going through getting a diagnosis. I had my first major abscess two years ago and had to have an excision surgery. It ended up being the size of a grapefruit. After a major fall of a horse, a pilonidal abscess showed up which has ended my riding. I've had abscesses since I was 12. Lately I get 1 to 3 a month. Every once in a while I get none. I have Kaiser and they haven't been to helpful in finally a reason to why I get these so I went to a dermatologist who didn't know but referred me to the Tri-County Dermatological Society and after 40 doctors looked at me and my history, they have narrowed it down to 4 things:
Diabetes- tested negative Polycystic Ovarian Syndrome- tested negative Crohn's- haven't undergone testing HS- Haven't undergone testing So it's back to Kaiser and now it's a waiting game to see if they will get the testing I need. HS fits more than Crohn's but since it's so rare they want to leave the Crohn's option open. Luckily, I don't seem to have that much pain. There may be a slight discomfort every once in a while but for the most part it hasn't inhibited my life. Except I cannot ride horses anymore, the pilonidal stopped that. My surgeon was surprised to learn I took zero pain meds after my surgery (I also ate KFC an hour after surgery- LOL! I was starving!) The one un-fun thing is that all my abscesses have happened below the bellybutton... Never had them under the arms or breasts. I did have a major one rupture in my torso and leaked through the bellybutton. I was super sick for a week. I'll keep everyone updated on the diagnosis. Diana Posted on 12/13/07, 05:12 pm |
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I am sorry you don't have an answer as to what you are suffering with yet. I sincerely hope that you do not have HS! Not that any of the other diseases your doctors have suggested are any better, but having HS is not easy. For me, it only gets worse as the years go by. I used to only get it in the groin areas. Then it became a problem under both arms in addition to the groin. Then on the breasts. I currently have active, draining lesions on my lower abdomen, above the pubic area. This is in addition to the underarms, buttocks, groin, and breasts. Lesions also occur on my neck, head and behind my ears. I used to get them frequently on the labia, those ones hurt! I also had a pilondial cyst that is now healed.
I am not aware of any specific test for HS. I believe an experienced doctor can diagnose HS from your history, symptoms, and looking at your lesions and scars. They can use blood work and tests to rule out other medical problems. The bad thing about HS is that there is not a treatment, medication, or other solution that fixes it or makes it go away. They don't know what causes it or how to make it go away. The doctors will surely try many different drugs and even surgery. Don't let anyone convince you to try anything without researching it yourself. I don't have a lot pain unless the lesions become infected. Recently some doctors at Cleveland Clinic had me try smooth beam laser treatments. This is the same type of laser they use to remove tattoos. I felt no pain. They were amazed. They kept asking me if I was OK, and I kept telling them it didn't hurt at all. Before I went in for my treatment, I heard other patients yelling and pleading to stop! Please note: the laser treatments didn't do anything to the lesions, I still have them and they are still draining. Maybe I just have a high tolerance for pain. I never used any pain medications giving birth to my children either. I also have leakage into the bellybutton. Can you tell me more about that? 
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Yeah, I've had leakage from my bellybutton for a while. It happens when I get sick or stressed. The one bad time, and we believe it was an abscess in the abdomin (sp?) that had ruptured and since it was in the torso, there is no where for the pus to go, the immune system had to do "clean up", by using the usual immune system responses (fevers, etc). Only a small amount made it through the belly button but did it stink! I told my doctors who just said, "yeah it was probably an abscess but it's popped, what do you want us to do about it?" So that was dropped. It's been two years so, they may have been right.
I too wish it's not HS. I'd told some friends that I hope it's Crohn's since if it's Crohn's I've got a very mild case. If it's HS, it would be a very normal case. Oh abscesses in the labia area are the worst, only ones I have pain with. But since I've stopped shaving, I haven't had one. I think those were more bacteria based for me. I guess I too have a high tolerance for pain. My surgeon could not believe I didn't use pain killers after my surgery. However, it seems to only work with my abscesses, otherwise I get pain quite easily. Maybe I just skip the pain part, cuz if I cut/burn myself (accident prone), I just faint! It's just T-I-M-B-E-R!!!! I laugh about it but it's not fun... Honestly, I've learned to take everything docs say with a grain of salt, unless they are the #1 doctor for that disease. I hid my abscess from my nurse mom for years since I thought it was "normal", that I just had bad "butt-acne". I've learned how to keep the abscesses down, stress, periods, and sadly, horse-back riding seem to make the abscesses pop up. The dermatologist said that there is a blood test for a certain anti-body that can be used to diagnose HS. Personally, my family has a lot of auto-immune diseases so I have a feeling prednisone will probably help me. We'll see...
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