Post Vasectomy Pain Forum

PVPS vs general chronic post surgical pain


#1

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.


#2

I think this is a really insightful post. Some people’s bodies just don’t handle surgery well, myself included, apparently. I’ve spent a lot of time trying to figure out if I have congestion or nerve damage and it could be neither. It’s probably just my body’s inflammatory response to the procedure and I just hope it eventually cools off. I think a lot of people here are in a similar boat. Thanks.


#3

Thanks Karl. Glad I could be of help. Sounds like we have similar cases, and like you said, probably lots of others too. Doing reverse kegels and internal pelvic floor therapy has helped me. I have previously tried to share a link to a helpful book on here, but it was taken down. I guess it violated a rule to suggest a book. If you are interested you can pm me and I will send you the link.

Searching on “chronic post operative pain” helped as well. I found lots of information about remaining active and in the right mindset to reduce pain over time. Your body’s/mind’s typical reaction of pain avoidance can actually lead to more pain, so you have to re-program your brain on how to react to it.

I’m coming up on one year and I still have bad cycles that recur for a couple weeks at a time but I feel like they are getting less severe over time. It’s just taking so long. And even in between episodes I always have sensitive epis. But it’s interesting how the pelvic floor therapy can help that type of pain, which you wouldn’t think would be connected.


#4

@SPR, Very interesting post, thanks for sharing. I read similar numbers, about 20%. And I was anxious before and have skin problems, too. I’m not sure about the whole congestion yes or no discussion.
Did you have pain straight away after the surgery, or has it developed over time?


#5

I had no pain during the procedure due to the lidocaine. Once I got home I had significant “kicked in the balls” pain all that evening and the next day, but if I laid still I was pretty good. That pain wore off over a few days, but then I got major soft tissue swelling of testicles and scrotum. Way more than normal. Icing didn’t seem to do much for it. The swelling took a couple months to totally go away. All during that time I had all kinds of off and on nerve type stinging shooting pain and hot, swollen feeling all over. Couldn’t touch epis at all. Mostly nothing triggered by sex, though. Totally independent of that. Over the past year, I have had very slow progress with ups and downs. Many “types” of pain have gone away but I’m still left with sensitivity and occasional aching.


#6

Good insights. Thanks for posting. After having been at this for 14 years off-and-on, I’ve changed my own thoughts on this matter.

I tend to align with Dr. Boyle in that I believe congestion is real but less common than most members here think. I think there are fewer with congestion and more with nerve issues. And, I agree that it’s simply due to surgical damage to the nerves as are the risks with other surgeries but, as with the scrotum, it’s external, moving, and innervated with many nerves for obvious reasons.

I believe reversal works in some cases because of the clean up done, not the restoration of flow and fertility. I believe that occurred in my case, but I also think I benefited from reversal in other ways. It restored normal PSA and T-levels.

I think a lot of doctors probably think these things in their minds, and I think many think vasectomy is dangerous, but there’s no “club” or venue for them whereas the AUA and many feminist groups actively promote vasectomy as safe. This is how small minority groups can enact their policies against an unmotivated or dispersed majority. It’s how entire countries or religions get hijacked by motivated minorities, but I digress.

I think we’re doing important work here by getting our stories out in the public domain.


#7

@raising4girls,

Yes, I agree with what you are saying. I will add, though, that my wife has had similar experiences with her doctors and midwives. She tried a Mirena iud and we both had problems with it. I kept getting poked by the “strings” (which are really like pokey fishing line) and she had pelvic floor issues and breast pain. Her concerns were not taken seriously even though she returned several times to complain. She kept being told that her problems were not from the device, even though a quick search online will unveil plenty of others with similar issues. I just think the medical establishment doesn’t want to deal with the minority of patients that react badly to their “safe and effective” procedures.