several of my joints were inflamed and my range of motion was reduced. When he was done, he told me something that changed my life. He said “I don’t think you have Fibromyalgia. I don’t know what the heck you have, but I’m not going to quit trying to find out!”
He started sending me for tests and I have since heard him tell many medical students what happened next. “The more I looked, the more I found. He had osteophytes [bone spurs] pinching nerves and herniated discs throughout his spine along with multiple problems in bones or joints in the rest of his body.”
He truly wanted to help me, and never have I encountered a doctor as an adult that I felt took me seriously until I met him. I was petrified that I would do or say the wrong thing and he’d stop seeing me. So, I told myself that I could handle the boils on my own and that maybe when I knew him better, I would mention them if they were still bothering me.
That plan worked… until it no longer did.
I had one lesion that was the size of a golf ball in my groin. The pain was almost unbearable, so when it burst I assumed the pain would start to get better. Instead, it continued to drain every day and never really got any smaller. Around 2-3 weeks later, I started to panic when the bump started growing again. Between the severe pain and major anxiety about what was happening, I finally knew that I had to tell my doctor about it.
Although I didn’t know it at the time, I was very lucky to have a doctor who was able to give me an educated, professional diagnosis. After making my call to him, he squeezed me in for an appointment later that afternoon. In tears, I explained to him what was going on and when he saw for himself, he commented with some surprise at the number of scars I had.
He then explained that he was going to send me to a Dermatologist for confirmation, but he was quite confident I had a skin condition called Hidradenitis Suppurativa. What I learned much later was that the average HS patient sees ten different doctors and usually waits up to seven years to get a proper diagnosis.
There are three stages of HS and at my worst, I was a severe stage 2. I am happy to say I am now in stage 1. My HS diagnosis was the final piece in the puzzle that eventually led my doctor and I to put a name to what was going on with me. My full diagnosis is Sapho Syndrome with associated HS Disease. Sapho is an acronym standing for Synovitis, Acne, Pustulosis, Hyperostosis, and Osteitis.