Thanks @atlanticcoast that’s exactly what I was looking for. Sorry to hear you’ve got a flare up. Are you still happy you got reversed? How much relief did you get?
Anyways, back on topic, I sent out the CUA and AUA guidelines, along with Tandon (2008) Leslie (2007) McMahon (1992) and Scherger to Uptodate, along with this letter:
"Thank you for responding to my inquiry.
I am enclosing herewith the American Urological Association’s vasectomy guidelines, along with the Canadian Urological Association’s vasectomy guidelines. In it, you will note the AUA states that 1-2% of men will experience chronic scrotal pain post-vasectomy that is severe enough to negatively impact quality of life. The CUA guidelines note 1-14% chronic scrotal pain.
I take great issue with the description of post-vasectomy pain syndrome by Uptodate. It reads as though it is a problem which will sort itself out and rarely requires treatment. This is patently untrue. The true cause of post-vasectomy pain syndrome has not been definitively determined, as you will note in the attached studies. Damage to or entrapment of the spermatic cord nerve structures in fibrosis is another suspected cause of post-vasectomy pain syndrome.
If nerve damage or entrapment were not possible with a vasectomy, and it were truly just backpressure, then a vasovasotomy would be 100% effective at relieving pain, which it is not.
You will note that the attached article of McMahon et al. (1992) lists chronic pain or discomfort after vasectomy at 33%. Most men are not bothered by the discomfort, although 15% describe it as troublesome, with 5% seeking medical help for testicular pain post-vasectomy.
In the attached article of Tandon and Sabanegh (2008) states “it has a risk of significant morbidity in ≈1% of patients.” and they also describe post-vasectomy pain syndrome as “disappointingly common and difficult to treat.” They go on to describe treatment methods and success rates, which are, unfortunately quite low (vasovasotomy 69% [Nangia], 76% for denervation of the spermatic cord, and 55-73% for orchiectomy).
Leslie et al. 2007 (attached) show 2-6% will have pain severe enough to impact quality of life.
Taking the AUA guidelines into account, 1 in 50 will have severe chronic pain, which is, in my respectful opinion, quite common as far as surgical complications go.
An overwhelming trend that I have noticed in these articles is the author notes how it is important that these findings regarding chronic pain be mentioned to the patient as part of informed consent. Unfortunately, in practice, this is rarely being done.
The Campbell Walsh Urology textbook’s 1 in 1,000 is still being used as a chronic pain statistic, however, that number is pure science fiction. It was a circular reference that they have recently removed.
You will also note that the National Health Service in the United Kingdom state:
“Long-term testicular pain affects around one in 10 men after vasectomy. The pain is usually the result of a pinched nerve or scarring that occurred during the operation. You may be advised to undergo further surgery to repair the damage and to help minimise further pain.”
That is 10%. A far cry from 1 in 1,000 and certainly not rare in any case.
As to my background, I am not a physician nor healthcare provider. I am a patient with severe post-vasectomy pain and have been for 11 months now. I was told there was “a 1 in 10,000 chance of a chronic ache for which a reversal is required.” I trusted what the doctor told me and it has cost me dearly. I can no longer play sports, ride a bike, or run and I am in pain 24/7. I have difficulties working and have suffered an economic loss because of this. Had I been told there was a 1 in 50 chance of severe pain, I would have never had the procedure done.
I am being treated by Dr. Keith Jarvi at Mt. Sinai Hospital in Toronto, and although I will be undergoing a reversal next week, there are no guarantees that it will fix me, especially considering the fact that my pain is also neuropathic in nature. It could also make my pain worse. Dr. Jarvi literally said ‘we have to roll the dice’ to see if this will fix me. That’s quite an alarming thing to hear from a doctor. Never in my wildest dreams did I imagine this ‘safe and simple’ procedure would cost me so dearly.
This complication is in fact so common, that when I visited my family doctor seeking treatment for the pain, he advised me that he also has another patient that’s been in pain for 3 years, and that 2% of men will experience this. For reference, I live in a small town in Ontario, Canada, and that came as quite a shock to me. I have since met several men locally who have had post-vasectomy pain for years.
In closing, I ask that you update your page to include the 15% troublesome post-vasectomy pain/discomfort, along with the 1-2% AUA guidelines regarding chronic pain that interferes with quality of life.
Furthermore, perhaps a separate page on your site, about post-vasectomy pain syndrome and its treatment would be a valuable tool to physicians and patients alike who are either considering vasectomy or are suffering from post-vasectomy pain syndrome.
This is an all too common condition with life-changing symptoms, and most of the men suffering from this condition were not given proper informed consent.
Uptodate is a valuable resource for patients and physicians alike, and the absence of post-vasectomy pain syndrome and how severe it can be and the last resort treatments (loss of testicle(s)) on the site is doing a disservice to patients everywhere.
Thank you for taking the time to read this and I sincerely hope you will give this your fullest attention and consideration. I may not be a healthcare provider, but I am one heck of a researcher."
I don’t wanna toot my own horn, but I think that looks pretty good. If they’d add this to Uptodate, it’ll go a long way towards raising awareness and proper informed consent for men considering vasectomies.
I’m sure most guys will still go ahead, but at least a family doctor or whomever can look it up and go, wow, holy crap, that’s pretty common.