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,...
I'm not diagnosed with H.S. but I know it's what it is.
Six different doctors arguing over what is causing these horrendous and hideious cysts in my groin area and my inner thighs. I've had the staph treatments, the bleach baths, the witchhazel creams, the antibiotics, the steroids.
I am 25 and uninsured, so no dermatologists will even look at me, since I can't afford it.
My genitals look like I have stage 3 herpies and I haven't had sex in 4 years. It was January 4 years ago when the cysts got so bad I was afraid to even ask a doctor.
I'd had cysts in my region before. One, maybe two a year. To go so suddenly from one or two a year To nine or ten a week was horrible.
I don't know where to turn or what to do anymore. There is one that drains and then refills 3 or 4 times a day, it sucks. Today I discovered one right in the fold of my groin, and it's huge and painful.
Out of disgust, desperation, and out right distress I poured a slightly extra helping of bleach in my soak, washing with the antibacterial soap. Oh my god. I don't think my vaginal area ever burned so much. It was terrible.
I'm laying on the floor, sobbing, for a good 2 hours. My mother just says I need to lose weight and my problem will magically go away. I was so suddenly overcome with the depression I actually felt myself wanting to die.
She doesn't get it. She doesn't understand. No one will. Anyone I date with take one look and leave, or worse, stay out of pity and never touch me.
It's so awful I hate this so much. Why isn't there more research if it's such a common problem? Why isn't there more treatment?
I just feel so unbelievably hopeless
Six different doctors arguing over what is causing these horrendous and hideious cysts in my groin area and my inner thighs. I've had the staph treatments, the bleach baths, the witchhazel creams, the antibiotics, the steroids.
I am 25 and uninsured, so no dermatologists will even look at me, since I can't afford it.
My genitals look like I have stage 3 herpies and I haven't had sex in 4 years. It was January 4 years ago when the cysts got so bad I was afraid to even ask a doctor.
I'd had cysts in my region before. One, maybe two a year. To go so suddenly from one or two a year To nine or ten a week was horrible.
I don't know where to turn or what to do anymore. There is one that drains and then refills 3 or 4 times a day, it sucks. Today I discovered one right in the fold of my groin, and it's huge and painful.
Out of disgust, desperation, and out right distress I poured a slightly extra helping of bleach in my soak, washing with the antibacterial soap. Oh my god. I don't think my vaginal area ever burned so much. It was terrible.
I'm laying on the floor, sobbing, for a good 2 hours. My mother just says I need to lose weight and my problem will magically go away. I was so suddenly overcome with the depression I actually felt myself wanting to die.
She doesn't get it. She doesn't understand. No one will. Anyone I date with take one look and leave, or worse, stay out of pity and never touch me.
It's so awful I hate this so much. Why isn't there more research if it's such a common problem? Why isn't there more treatment?
I just feel so unbelievably hopeless
I think the most people like us can do is just keep trying new things and not ever get tired of trying. I've done long term antibiotics, creams, washes, soaps, remicade, humera and a ton of other stuff. I think the problem really does have everything to do with what we're putting in our bodies, so trying to treat the outside will never help.
Lately I had been trying the autoimmune protocol diet and there was a huge difference in the amount of drainage and how I felt, energy wise. So maybe you should try that. Problem is I was starving for the entire two and a half weeks that I was on it. So yes, I lost weight but I was kinda unhappy even though I felt better. Which resulted in me prematurely adding things back into my diet. I'm going to try the paleo diet this time for a long period of time (but this time be more prepared) and see if it helps. A lot of people say its the answer to their prayers. And at this point I'm in no position to write anything off until I try it first. Maybe you should try the holistic approach dealing with your diet for a while and see how that helps you? I'm sorry I can't give very good advice. I'm a trial and error, just like everyone else here. I really hope you feel better, though. The depression that comes along with this really sucks.