Mira

I do realize that this disease is a painful and very embarrassing one, as it has been that way for me also for many years. I am a 41 year old woman and have been suffering with this for 19 years. I first noticed this disease (although I didn't have any idea it was a chronic disease or that it had a name) when I was pregnant with my first child in 1977. I started getting what looked like "boils" that would come up and then go down on my buttocks. When one got big enough or painful enough to make me want to see a doctor, I was usually told it was a "boil" and that I should go home and put hot compresses on it until it came to a head, then come back to see him. Well they never came to a "head", but just eventually went back down.

In 1985, I was in the military and seen by a doctor there who said they were not "boils" but "cysts" and that I should let him "cut them out". Well I was afraid of the scarring and said "no". In 1987, those "boils" "cysts" abscessed and I had to have emergency surgery as they became one big gray mass on my right buttock and didn't look like it would go down by itself as usual. They found approx. 10 cystic like masses when they operated. The scar was very small and I didn't think much about it. I still didn't have a diagnosis except of "inclusion cysts on right buttock". About 4 months after the surgery, an infected "mass" came up over the surgery site and I was put on various strong antibiotics and told it was some kind of infection and it was "tracking". The mass would come up and burst open eventually and drain a lot of blood and pus. Finally one doctor sent me to the hospital as he felt I probably had more "cysts" down deep that needed to be cut out. Well, they did find what they described as about 15 cysts and a lot of "strange" tissue, so much so that they removed a lot of tissue from my right buttock (but I didn't know that until I went home and the bandage fell off prematurely). I didn't realize how much they had to cut, and assumed it would be similar to the first surgery, but I was wrong. They had to remove so much tissue that I have three scars going in all directions and about 1/3 of my tissue removed and my right buttock has a "caved in" look. I have lived with this many years and am very ashamed and embarrassed to let anyone (even another doctor) see it. At the beginning, nurses who saw it used to ask me if I have had radiation to the area.

Well, finally in 1995, I was sent to a doctor because more of these "cysts" "boils" were coming up around the surgery site, but not on the scar tissue of the surgery - and small ones on my face in front of my ears that were different from the ones on my buttocks as they didn't hurt and never went away. She diagnosed me with having hidradenitis and I finally had a name to put on it. The ones on my face seem to be spreading towards my nose as the years go on and I am very afraid of what my face will look like a few years down the road. I was seen by a plastic surgeon attached to a teaching hospital and he refused to operate on the ones in front of

my ears as he said that it would be dangerous to try to remove them as they wouldn't have a way to "drain" and might become a large inflammation with more scarring due to the surgery. I am also getting them on my left buttock now and am afraid that one day I will have to have surgery on that side which will then leave me with both buttocks very deformed looking.

I have recently gotten remarried and will not let my husband see or feel my buttock, as it is very embarrassing to me, although he says that it "doesn't matter to him." Well it does matter to me as the first time my ex-husband had seen the area after surgery in 1988, his face dropped. For the last 8 years of our marriage, I never again let him see it if I could help it. I feel like a woman who has had a mastectomy. Between having a very deformed right buttock with more lesions coming out around the surgical site and now having the lesions coming out on my left buttock, I feel like I am totally disgusting and unattractive. The ones on my face so far I have been able to cover with makeup, but I pray that they don't spread or get bigger.

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