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My Story
I will start from the first time I noticed HS (of course I didn't know it was HS at the time).
I was a truck driver for a furniture company when I was 20. I noticed a rather large zit on my left butt cheek that hurt pretty bad. It didn't help that I sat down driving a truck all day. The lump went away after a while without ever draining. Sometime later, I had two lumps on my butt that hurt. The swelling went down, but they didn't completely go away.
I had a similar lump under my arm when I was 21. It hurt pretty bad, but the swelling went down on it's own after a while. It seemed to go away completely.
When I was 22 I was playing bass guitar in a rock band. The lumps on my butt swelled and subsided for a while. I was sure it was cancer and that I was going to die. Then it started draining. I would use medium sized adhesive pads (from Band-aid) to cover them and soak up the drainage. One night while I was drunk, I went to the hospital emergency room because the swelling was very bad. The doctor told me I had a staph infection, prescribed an antibiotic and sent me home. I took the antibiotics. They seemed to help for a while, but the lumps came back and the draining got worse.
I had a case of genital warts later that year. I went to a dermatologist to have them removed. I showed him the lumps and draining on my butt. He said I had a bad staph infection and that it would require surgery to correct it. I was not up for surgery.
When I was 23 the lumps had spread to a larger area of my left butt cheek and I had to start using larger adhesive pads. I was still playing in the band, and we were touring 5 days a week, so I spent a lot of time sitting in our van as we drove all over the country. This was very painful, especially when it was my turn to drive. I went to another doctor who prescribed the same antibiotic I had received before and suggested soaking in the tub twice a day. I was in a band on the road, so soaking in the tub really wasn't an option. The antibiotics didn't really help.
By the time I was 24, the pain was getting really bad. I was having really bad pains in my leg, also. I quit the band and traveled the country for a while. While in Boulder, Colorado, I visited a clinic. The doctor there said I had a staph infection and gave me antibiotics. They didn't help at all. The doctor also said that the pain in my leg was from a swollen lymph gland that was overworked because it was fighting the staph infection.
I returned to my mother's house shortly before I turned 25. My mother died soon after, from diabetic complications. She had been sick for a long time. My HS got steadily worse. My genital warts came back. I went to another dermatologist for that, and I showed him the draining lumps and sinus tracts on my butt. He said I had a staph infection and told me to go to the hospital and get some surgery. I still wasn't up for any surgery. So I just lived with HS.
I had a massive lump under my arm. It grew as big as a baseball. It finally drained and went away. I missed two days of work.
When I was 28 I left to travel the country again. I ended-up in New Mexico for a few years. My HS was much better while I was there. I had become a little bit of a religious person then, and I was attributing my remission to God for a while. But the swelling returned, along with the draining. Other problems I'd had for a while got worse. It was my last year in New Mexico that I really started having bad problems with my stomach and bowels. That's when I started to see blood in my stool. Many nights I went to bed wondering if I would wake-up the next day.
When I was 32 I moved to California. My HS got worse while I was working a night security job. I sat in a golf cart and drove around all night. The nice thing was that I could use the bathroom and clean up my drainage any time I needed to, but the smell had gotten much worse. Two lumps had formed in the crease of my leg, right behind my testicles. Then they began to drain. I had nightmares about going to a doctor and being told I would have to have my testicles removed.
Since then, I moved from the resort/campground/marina where I had lived and worked into town and took a job at the Home Depot. That was a physically demanding job requiring close interactions with customers. My HS hurt a lot, and I had to constantly change the dressings on my HS because of the smell.
It was around this time that I learned that my problem had a name: Hidradenitis Suppurativa.
The Home Depot did not give me enough hours over the holiday months and I couldn't find a second job, so I couldn't afford insurance on my van. I had to ride my bike about 8 miles each way to get to work and back, and that did not help the pain and draining. I finally quit my job.
I qualified for unemployment, and though it doesn't pay much, I can live on it for now. I was considering going on disability, but I really don't want to do that. That's when I became really active in HS research and came up with my theory and treatment plan. Despite my recent incident (see my treatment diary entries for 8/4 and today, 8/5) I think I am really getting much, much better.
Obligatory Disclaimer:
The information contained throughout this website is intended for educational purposes only. It is not meant to either directly or indirectly give medical advice or prescribe treatment. The information has not been scientifically validated or approved by any government or regulatory agency. Please consult with your physician or other licensed health care professional for medical diagnosis, prescription, and treatment.