Just sent this off to the Ombudsman at the Cleveland Clinic.
I’m writing not to complain about services at the Cleveland Clinic but to express concern about inaccurate and misleading statistics published on the Cleveland Clinic’s website about the risks of vasectomy.
I have been treated off-and-on since 2005 at the Cleveland Clinic for Post-Vasectomy Pain. I have nothing but glowing comments to offer about the treatment by numerous physicians since then. In 2005-06, I was treated by Dr. Anthony Thomas and Dr. Negy Mehkail. After the Pain Management injections failed to provide relief, Dr. Thomas provided vasectomy reversal surgery in mid-2006, and I became pain-free within a few months.
I suffered a short relapse in 2008-09 and received the same, wonderful care from Dr. Sabanegh (who had replaced the retired Dr. Thomas). After 6 months of treatment by Dr. Sabanegh, I became pain free again which lasted until April, 2016, when the same scrotal nerves became re-sensitized and painful. Once again, after 10 years of remission, I was back at the Cleveland Clinic. This third, most stubborn bout with PVP lasted 2-1/2 years 'til late 2018, but again, the great inter-disciplinary group of Dr. Shoskes at Glickman, Dr. Grimm in Pain Management, and Dr. Krpata in general surgery were able to get my pain knocked down to virtually nothing. I am so grateful for the continued help from the Cleveland Clinic for treatment for nerves that were damaged during my 2005 vasectomy (not done at the Cleveland Clinic).
I provide this background because I am also an original member of a men’s support group called postvasectomypain.org where we provide support and referrals to thousands of men injured by vasectomy. Several members noticed that the Cleveland Clinic’s website regarding was recently updated, and it now states that “a very small percentage of men (approximately 1 in 1,000,000) might develop post-vasectomy pain syndrome, which means pain that lasts past three months.”
We know that statement is inaccurate, and I’d be happy to meet with personnel at the Cleveland Clinic to provide researched evidence but, candidly, I don’t think that’s necessary. The physicians I’ve seen at the Cleveland Clinic have all told me directly or, at least anecdotally hinted, that the numbers of men with PVP are far greater than 1 in 1,000,000. Dr. Thomas, for example, specifically told me in 2005-06 that he was seeing 2 new PVP patients PER MONTH, or ~24 per year. If he saw every PVP patient in the US, where 500,000 vasectomies are performed per year, the risk would be 24/500,000 or 1/20,000, and that absurdly assumes no other doctor in the US was treating PVP patients. If just 20 doctors were treating the same number of PVP patients, we could easily estimate the risks at 1/1,000.
While that’s just anecdotal evidence, Dr. Sabanegh himself was co-author of a study that affirms that balpark estimate of 1/1,000 men developing post-vasectomy pain. He’s a link to Dr. Sabanegh’s co-authored research. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1464-410X.2008.07602.x.
I don’t want to speak for Drs. Mekhail, Grimm, or Shoskes, but based on their treatment of me and my discussions with them, I think they’d also agree that the risks of men developing post-vasectomy pain are more like 1-2/100 or 1-2/1,000 and far more than 1/1,000,000.
Lastly, a very recent 2016 study revealed that the incidence of PVP could be as high as 6-15%! Note this line from the publication: The exact incidence of PVPS is unknown but was estimated to be very low (<1%) in the past.4,5,6,7 However surveys in recent years have found that almost 15% of men suffer from PVPS, with 2% of men experiencing pain intense enough to impact their quality of life.8,9 One review reported that 1 in 1000 men who undergo a vasectomy will sustain long-term pain requiring surgical intervention.10. The full publication can be found here. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4854072/
Yet another medically-researched publication also puts the risks well above 1/1,000,000 for the development of post-vasectomy pain. https://pdfs.semanticscholar.org/651e/15408724a1c001c1b94c213d51b85fc56f2b.pdf
Please know that I am not writing to complain about the Cleveland Clinic physicians. The pain I suffered in following my vasectomy in 2005 was so excruciating that I don’t think I’m exaggerating when I say the Cleveland Clinic, specifically Drs. Thomas and Mekhail, saved my life. My relapses of pain, albeit a bit less painful, were life-altering, and I received equally wonderful treatment of many Cleveland Clinic physicians. I will be eternally grateful to all of them.
I’m simply writing to help the Cleveland Clinic align its website with the opinions and research, in some cases research done by its own physicians, so that men have a clear and accurate understanding of the risks of vasectomy.
Scott A. Holter