Question:
Does anyone else have Hidradenitis Suppurativa?

Hi Everyone I have a underrecognized skin condition called Hidradenitis Suppurativa, a very painful condition in which lesions appear in several areas of my body, often making it too painful to do day to day activities. I was wondering if anyone else has this diagnosis, and if so if they have received support in labeling it as a comorbid condition. Becuase there isn't all that much research on HS, I am concerned it will get in the way of my insurance company approving my surgery. Any feedback is greatly appreciated. Take Care! Meagan    — CelestialMeg (posted on September 23, 2003)

September 23, 2003
I was diagnosed with this when I was 10 years old. My endocrinologist says it is associated with insulin resistance/Polycystic Ovary Syndrome (PCOS). Since losing weight I really don't think I have had anymore outbreaks. I couldn't even tell you the last time I had a lump. I remember how painful they were, even as a child.
   — Tammy W.

February 6, 2004
I first had hidradenitis when I was 27 following a 32lb weight loss using the Diet Center in 1985. I was not obese at the time but a good 40lbs above my ideal weight. I had several serious bouts with HS in the coming years and my doctors just called it "boils". They were under my arms and in my groin areas. The Doc would put me on antibiotics and they would go down and when I would go off the meds they would come back. Of course I kept telling the doc they would be back and he needed to do somehting more but...oh well, who am I? I've only lived in this body for 27 years, right? In desperation I went to a health food doc and just quit all meds and I had boils everywhere! One day I almost collapsed at work and my parents rushed me to the doc's office who scolded me and sent me straight to the hospital. My doc asked me which surgeon I preferred to excise all the boils. Thank God my best friend's husband is an excellent surgeon and he did the work. They put me to sleep and excised more than 14 boils from different areas of my body. It had grown into a full blown resistant strain of staph, (thanks to the doc putting me on insufficient antibiotics one after the other), and it took 4 days to find an antibiotic that was sensitive to it. I ended up on 10 days IV Primaxin in the hospital. My excisions were left open to heal from the inside out and each morning they would wheel me down to the basement of the hospital to this huge whirlpool vat full of hot water and betadine. Strapped to a flat board, they would lower me into it and let the water cleanse my wounds for about 20 mins. It felt great. I didn't mean to go on so long but the reason I posted is because I associate my break outs with rapid weight loss. It has been many years since I have had a breakout of HS but even now when I diet, I have acne and small boils. I am concerned that I may have a more serious outbreak of HS following WLS, which is scheduled for 3/16/04. Any feedback is appreciated.
   — Maryan Y.