A year prior to the pandemic, I was struggling with painful recurring scrotal infections. Three different urologists suggested surgery, but no one wanted to do the complicated procedure. Then came the pandemic. My latest urologist treated me with medications. All went well enough. Then, at the beginning of 2023, the hospital urology clinic suddenly closed due to pandemic-related financial disaster. My favorite urologist — and others — disappeared. I haven’t seen or heard from him since. Two months later another scrotal infection came out of nowhere. Emergency surgery to remove a huge abscess took me down. The pain was unbearable. I was bedridden, in daily pain, for the next nine months.
Two more surgeons have told me I need surgery to correct the cause — a fistula that drains from my urethra to my scrotum — but both providers say it is a high risk, 6-hour procedure. Chances of failure are as much as 50%. A consulting vascular surgeon agreed, advising me not to take a chance on the surgery. My age (78), spinal cord injury, full-time wheelchair use and history of circulation problems made it too risky, he said. I had two options: agree to the high-risk surgery that could leave me worse off, or do nothing. “Sometimes,” said the vascular surgeon, “better is the enemy of good” — meaning since the latest infection had resolved, just accept it as “good.”
What is “good”? What does any doctor know of my everyday struggle with chronic pain and how it has severely damaged my quality of life?
I found a certified pain specialist who knows the mysterious world of chronic central neurological pain due to spinal cord injury. I spent a full hour consulting with her after a painful trip that resulted in even worse pain for the better part of that week. Now I have a plan of care, complete with suggested specialized pain meds and optional treatment options. Since she was the director of a major metropolitan pain care clinic, she referred me back to my primary care physician, so he could follow up.