Post Vasectomy Pain Forum

Misinformation from medical authorities

Just sent this off to Dr. Shoskes at the Cleveland Clinic. Hope others join me. @mklamut79, with your more recent connections to Sabanegh, I think we need to get access to him. He’s got to know that the 1/1MM number is BS. I’ve been impressed with Sabanegh and think he’d have the website edited if he’s made aware of the error.

Dear Dr. Shoskes and Team - It’s been a while since I last saw Dr. Shoskes, and I wanted to report that my scrotal pain finally went away a little over a year ago following nerve blocks and the amitryptline prescribed by Dr. Shoskes. This was my 3rd and most stubborn bout with post-vasectomy pain since 2005, and I’m SO grateful for the great, inter-disciplinary care provided by the Cleveland Clinic each time. From Dr. Thomas in 2005-06 to Dr. Sabanegh in 2008-09, and Drs. Shoskes and Grimm 2016-2018, I’ve had great caregivers.

The other reason I’m writing is that I’m concerned about a publication on the Cleveland Clinic website and wondered if Dr. Shoskes’ office could point me to the proper channels to discuss. The website cites that approximately 1 in 1,000,000 men develop post-vasectomy pain syndrome. Based on my treatment and anecdotal discussions with Glickman professionals, I believe that number is being understated. Further, my review of various medical publications over the past 20 years cite measured statistics in the 1-2/100 to 6-15/100 range, much higher than 1/1MM.

I’m hoping your office can point me to the source at the Cleveland Clinic to speak with on behalf of the thousands of members of postvasectomypain.org to offer statistically-based proof that the Cleveland Clinic’s website is understating the risks of vasectomy.

Thanks for any direction you can provide and, more importantly, thanks for helping me personally in my battle with PVP.

Scott Holter

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It would be great to see the CC correct the 1 in one million statistic, but in all honesty, I found a slew of things about the OP article to be complete brainwashing nonsense.

Agreed, but it’s easier to fight data with data.

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You’re right, and even if every one of them showed up on this forum, we’d only see one new American member every 2 years, but just watching this forum, I’d guess it’s closer to 1 every week or at least 1 every month.

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Just sent this off to the Ombudsman at the Cleveland Clinic.

Dear Ombudsman

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.

Sincerely,

Scott A. Holter

216-403-6735

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Very well worded @raising4girls.

When I went into the urology office for my first urgent visit due to debilitating spasms of pain on day 35 after my original surgery, I remember the doctor telling me there was a 1 in 10,000 chance I was that one guy who would live with chronic pain for the remainder of my life. Where did he get that statistic? He said he had done 4,000 of them and no one had never not recovered. Unfortunately, I took confidence in his words and then was wracked with further spasms of pain in the months to follow until I finally had the surgery reversed 12 days ago.

I met with three different urologists from that office and spoke to one other over the phone at various stages in my journey. Two of the four gave me the same story as the first: “Don’t lose hope; Everyone gets better eventually; We’ve never not had one of our patients recover.“

The fourth never saw me in person. He reviewed my charts prior to taking my call on the weekend and told me I was a “prime candidate for a reversal.” I plan on writing him a letter one day and thanking him for getting my diagnosis right if this all pans out for me in the near future.

I’d be willing to wager my entire 401k balance those first three doctors are still telling folks who suffer pain after their vasectomies, “None of our patients have never not gotten better. Don’t lose hope.” How would they know my story ended with an $8500 bill out of pocket for a reversal surgery? They certainly never called to check in on me after I stopped calling them to complain of my terrible pain. I think they saw me as nothing more than a liability. They certainly did not get into the health care business because they are generally sympathetic people because they, other than the one fine doctor I mentioned, never empathized with me one iota.

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I can try and reach out to him, no guarantees. but I will do my best.

mike

Bad timing…they’re a bit pre-occupied now preparing for the shitstorm on the horizon.

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agreed, we won’t be attacking our problem anytime soon. busy here at the clinic.

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My data from doctors in the Austin area:

Dr. Kavousy: “…1-2% develop pain and complications. Considering the number of vasectomies done per year in the US this is still a lot of men”. … “…Overall 6% of men who do vasectomy want a reversal for different reasons…”

Dr. Sandeep Mistry (N Austin): “I do hundreds of vasectomies every year and get 3-4 / year who end up like you”.

These are live doctor :man_health_worker: statements to me. I don’t want to go to a court and put these guys on the spot but definitely CC has a thing or two to fix in their statements.

@Ethan_Scruples great work on your hobby. It helps clarify things to the community. Eventually this collection will be very valuable as you collect more data.

Ali

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Today i visited a uro dr. in a high class private hospital. We discussed about orchiectomy. İ asked about the pain in the lefty ball. He said " its nerves are different and no pain is possible". İ said “it started to enlarge and it creates pain”. He said it does not enlarge…wow…
İf i do a quick search it is not the case…the remaning started to enlarge and its outer envelope May create pain.
Also he said during ejaculation no pain is possible in spermatic cord…
So he is a uro dr and i am not. But he doesnt know results of orchiectomy.

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Wow that’s some tough resistance. Looks like he is either not listening to you or thinks you are on drugs or something. This is crazy!!

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I am still completely blown away by the OP article and by the one I posted. The more I think about it the more upset I get about it. It’s not the one in one million pvps statistic that really gets me - it’s all of it.

There are way to many memes and inaccurate statements in both articles - especially in the OP. Perhaps some idiot that has an agenda wrote both articles, but the one I posted has quotes from a supposed leading authority within the CC.

Quote-

“Over time, too much pressure in a purposely plugged epididymis can cause a rupture, forming a secondary — albeit non-painful — blockage, Sabanegh.”

What a misleading and disturbing statement. I can only hope his words were twisted out of context, or a good portion of his statement was ommited prior to publishing the article I posted. Such statements simply do not allign with the data within the Wikipedia article below.

A couple of relevant contradictory studies in regard to the statements in the OP (thank you OP where relevant).

No change in semen volume?

We have contradictory data at our fingertips that suggest 10% less semen volume post vasectomy.

More data with relevant contradictory findings below…

I could go on and on picking the CC’s literature and statements apart with fact based data, but I simply don’t have the time at the moment.

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Looks like they have removed the offending text from the webpage.

The text now reads:

Pain: Any procedure can affect nerves and, rarely, there can be residual pain. The testicles are sensitive organs, so pain can occur in men whether they have had vasectomy or not. It is not clear whether vasectomy increases this risk of testicular pain. 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. Some of these men decide to have the vasectomy reversed.

So I’m not actually sure that this is an improvement, now that I think about it. We’ve gone from having a reference to “post-vasectomy pain syndrome” with an incorrect incidence (1: 1,000,000) to deleting any mention of PVPS and telling readers that “It is not clear whether vasectomy increases this risk of testicular pain.” So they have left it by saying that the incidence could be (0:1,000,000) for all they know.

I’ll give them the benefit of the doubt here and assume that they just took down the false statement while they are figuring out what to say instead. Meanwhile, here some suggested text:

Pain: Any procedure can affect nerves and there can be residual pain. The testicles are sensitive organs, so pain can occur in men whether they have had vasectomy or not. Chronic scrotal pain associated with negative impact on quality of life occurs after vasectomy in about 1-2% of men. (From AUA)

Of if they want to do even better, they could say:

Pain: Any procedure can affect nerves and there can be residual pain. The testicles are sensitive organs, so pain can occur in men whether they have had vasectomy or not. Post-vasectomy scrotal pain syndrome is a scrotal pain syndrome that follows vasectomy. Post-vasectomy scrotal pain syndrome is often associated with negative cognitive, behavioural, sexual or emotional consequences, as well as with symptoms suggestive of lower urinary tract and sexual dysfunction. Post-vasectomy pain may be as frequent as 1% following vasectomy, possibly more frequent. The mechanisms are poorly understood and for that reason it is considered a special form of scrotal pain syndrome. (From EAU)

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That’s a whole lot more accurate than the majority of the leading medical institutions and solo practitioners worldwide would want anyone to know about beforehand. Disclosing all that would be bad for business, bad for the agenda, etc.

The outcomes of related studies, validated data, and so on, have been known about for decades, yet vasectomies are still being perpetuated with unicorns, rainbows, pictures of smiling happy couples, misleading statements, manipulative factoids, and so on.

IMO, it’s definitely not an improvement. How can one of the leading medical institutions in the US be having so much trouble deciding (correcting) what is going to be disclosed as “truth” on their website? I can only imagine what people are being told in person at their pre vas consultations at the CC. What’s so hard about simply siting the AUA’s definition of pvps and their statistics? Do they disagree with the AUA’s definition, statistics, and guidelines? FFS, what’s the problem here?

After that, you have to ask yourself, why do the accepted pvps statistics in the UK, Canada, the US, and elsewhere vary so much? How is that even possible? Do these countries medical analytical systems vary that widely? I doubt it. I’d guess there is some other sleight of the hand going on within such discrepancies.

For the time being, that’s all we can do. I don’t expect much to change myself. Whatever they are going to do, it will likely align with other leading medical institutions in the US such as the Mayo clinic, and so on.

Here is the relevant section from UpToDate:

Post-vasectomy pain syndrome — Post-vasectomy pain syndrome is distinct from postprocedure pain; however, there is some controversy regarding its definition and therefore prevalence 54. Historically, rates for post-vasectomy pain syndrome have been reported as very low (<1 percent). However, surveys have found that the incidence of “troublesome” post-vasectomy pain is reported by approximately 15 percent of men, with pain severe enough to impact quality of life in 2 percent; survey respondents, however, may not have been representative of all post-vasectomy men. 55,56,57,58

You can see that here, too, they seem to be having clarity problems, to put it generously. Or alternatively, granting the minimum credence in PVPS that they can get away with without printing things that are demonstrably false. I think it was Victor that got them to revise their numbers in 2013

But what is this?

Historically, rates for post-vasectomy pain syndrome have been reported as very low (<1 percent).

Reported by whom? Reported based on what? What studies are these reports anchored to? Why is UpToDate citing what amounts to nothing more than a rumor here as interesting or relevant? Or if this is UpToDate correcting the record, again thanks to Victor why don’t they state that plainly?

Historically, rates for post-vasectomy pain syndrome have been erroneously reported as very low (<1 percent), a number which cannot be found in any reputable studies of the incidence of PVPS.

Instead, they dignify the false rumor and anchor to it as the venerable traditional wisdom, rather than as the proven bullshit that mainly provides evidence that urologists trusting their recollection of how many men phoned back and said their balls still hurt years later and they hold the urologist personally responsible cannot be relied upon to deliver accurate incidence statistics.

Then they take a half-hearted stab at answering the question before basically throwing their hands up like Clevland Clinic and saying “But we haven’t really bothered doing the science properly so who knows? Can we stop talking about this yet?”

survey respondents, however, may not have been representative of all post-vasectomy men

Well golly guys, I guess science is too hard to do and we just can’t know anything then. Especially when we don’t want to know.

Meanwhile, Austin Auyeung at Royal College of Surgeons in Ireland is showing UpToDate how science is done and coming up with an incidence of 5%

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More like, especially when we don’t want you to know. They definitely know.

There are to many politics within modern medicine, including vasectomies, and the majority of people in this world seem completely unaware of any of it. There isn’t anything random or accidental about any of this political vasectomy stuff.

Campbell and Walsh, UpToDate, Wikipedia, this entity, that entity, the other entity, and so on. What a mess. Please get it together people.

Don’t forget that it’s far more profitable to treat pain patients indefinitely rather than telling them about the cure. The most inexpensive cure for vasectomy related complications is not having a vasectomy in the first place. Countless entities profit directly and indirectly from vasectomy pain, pvps, side effects, psychological, and so on.

I am completely up to speed with Victor’s contributions many years ago, but I am not sure how it really effected things in the big picture. I know what was supposed to take place, but did it? Have the textbooks really changed? Did it have a positive effect regarding awareness? Did it have a positive effect on society? I’m going to guess it amounted to a stalemate within the big picture, but IDK for sure.

Others have reached out to entities such as UpToDate and tauted some sort of victory afterwards. I’m still waiting.

The AUA’s guidelines on vasectomy are weak and their last update was in 2015. They aren’t in a hurry to do anything.

https://www.auanet.org/guidelines/vasectomy-guideline

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I know, I’m hemorrhaging money cause of this.

Here’s another medical authority that is shy about bringing up the whole “chronic daily scrotal pain” topic:

Complications of vasectomy include

  • Hematoma (≤ 5%)

  • Sperm granulomas (inflammatory responses to sperm leakage)

  • Spontaneous reanastomosis, which usually occurs shortly after the procedure

https://www.merckmanuals.com/en-pr/professional/gynecology-and-obstetrics/family-planning/permanent-contraception

This is from the Merck Manual.

Note that PVPS occurs at least as often as hematoma. Both are called out in the AUA guidelines as items that should be communicated to men considering a vasectomy. One made the list, one didn’t. What is the difference between hematoma and PVPS that can account for how they are treated differently here? :thinking:

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