I’m coming up on my one-year anniversary next month and at that time I plan to run down my full experience so far. But in the meantime I wanted to share some information about two urologists’ opinions that I have gotten.
My vasectomist was a very capable urologist at Johns Hopkins. I actually specifically went to him because I was worried about PVPS and wasn’t sure if I should have a vasectomy. I had pre-existing pelvic floor dysfunction (tight muscles with urinary symptoms for 18 years). He definitely didn’t promise I wouldn’t have issues and he did acknowledge PVPS is real, but I came away from the conversation convinced that the risk was relatively low, most cases were mild, and there was no known mechanism that would make me at higher risk for PVPS.
After the vasectomy, when I had LOTS of swelling and ongoing discomfort, he THEN explained that I probably had over sensitive nerves and it may take months for the signals to die down. This was somewhat different than what I got from him beforehand, but I do not think he was purposefully deceiving me just to make one “sale.” I did feel like he left some important information out though.
His take on my issue is that my nerves became hyper sensitive, causing inflammation, which in turn causes more irritation, etc. he said the cycle usually slooowly dies down, but he acknowledged there is a chance it may not totally go away. He discounts the congestion theory altogether and insists that all cases he has seen are due to nerves not settling down, which he says can cause all sorts of sensations, including pressure type pain, and pelvic tightening. Make of that what you will.
I went to see Dr. Karen Boyle at Chesapeake urology, who I think was recommended by someone here at some point. She had some interesting thoughts. First, she said she believes PVPS (due to congestion) is real. But that is not what she thinks I have. She said congestion-PVPS usually causes pain with erection and/or ejaculation. I generally do not have those symptoms. My discomfort is all over the place and is a general post surgical soreness, sensitivity, etc. She separates out these cases as the same as general chronic post operative pain common to any surgery (some more than others). She said the medical profession in general fails to warn of this outcome of ALL surgical procedures and it is basically the most likely complication of any surgery. She said she theorizes the testicles are particularly vulnerable because they are external and move constantly. She agreed with my other urologist’s theory of nerve irritation and inflammation. She also said it usually improves over time but not guaranteed to go back 100 percent. I went home and googled “chronic post operative pain” and “chronic post surgical pain” and found lots of information about how common it is, how poorly understood, and the failure of the medical profession to acknowledge it and warn of it.
One article had rates of chronic pain listed for common procedures and vasectomy was 20 percent rate based on that report. Post-mastectomy pain syndrome following breast cancer treatment also is common and sounds very much like Post vasectomy pain. And here is the big thing: there are KNOWN RISK FACTORS for chronic post surgical pain. They include pre-existing anxiety, irritable bowel, and irritable bladder conditions and sensitive skin. I have all four of these and this all really makes sense now!
Both urologists strongly cautioned against any invasive interventions since they are likely to cause their own pain. My vasectomist urologist flat out said that reversals don’t work. Again, he doesn’t believe in the congestion theory. He says if a reversal works it’s because of an unrelated reason, like scar tissue removal or placebo. Again, make of that what you will. Dr. Boyle disagreed with that. She said in a few cases there does seem to be congestion and a reversal can work, but only those relatively few cases. If I remember correctly, I think she said she NEVER does nerve blocks. She has seen too many horror stories. She does conservative treatment only, then will possibly do a minimally invasive procedure to remove scar tissue, or she will go straight to reversal if there is major congestion.
My big revelation from all this is how common chronic post surgical pain is from any surgery and how little awareness there is of it. I’m convinced that, at least in my case, that’s what I’m dealing with and I have to exercise, stretch, do pelvic floor trigger point release, and reduce stress.