Post Vasectomy Pain Forum

Up-to-date and vasectomy-information.com need an update

So my family doctor refers to up-to-date for medical info. Unfortunately it doesn’t list the AUA guidelines re pvps it says rarely. Lol.

Vasectomy information used to have a lot of pvps info, but it seems like some urologists must’ve pulled it from the site.

Let’s bombard these fuckers with emails containing the AUA guidelines

Sent my letter to uptodate.com today, cited the AUA and CUA pages as well as Victor’s blog about the Campbell Walsh circular reference.

Sending the guidelines out in mass mailings or notification letters of bad outcomes along with letters to the state boards is something we should do here. I think sending a complaint that includes the original poorly worded informed consent to the state board is a good idea too.

I would refrain from derisive language about providers on the board though. Its unnecessary to accomplish what we are trying to do and marginalized the community here.

We have a lot of good providers trying to help us. After my pain developed I started to see a really thoughtful nice man in the same group as my original urologist. He was a very methodical note taker, cautious and kind. He was genuinely surprised when I told him my reversal eliminated the worst of my pain. The point is although there may be some denial for selfish reasons out there that vasectomies can cause some men so much pain and disability, there is just a lot of ignorance and lack of awareness of not just the pain issue but of how to treat it too. By good men and competent caring providers I might add.

1 Like

Okay, so here’s the response I got from uptodate:

"Dear Sir,

UpToDate has two patient information topics on vasectomy.

The “Basic” version states the following:

What are the side effects of a vasectomy? — Side effects are uncommon, but can occur. They can include:

●Severe pain in the scrotum

The “Beyond the basic” version states the following:

PAIN CONTROL FOLLOWING VASECTOMY — After the vasectomy, there may be some cramping and discomfort of the scrotum. This can be relieved by ice pack application and with a pain medication such as acetaminophen (Tylenol). Ibuprofen and aspirin should be avoided for at least one week because these medications may increase the risk of bruising or bleeding around the incision. For more severe pain, a stronger pain medication may be prescribed. Most men find that they do not need the stronger medication.

and

●Post-vasectomy pain syndrome – A feeling of fullness from sperm congestion occurs in up to 6 percent of men after a vasectomy. This is due to stretching of the surface of the testicle (epididymis) from stored sperm cells. The full sensation usually resolves after a few weeks and requires no treatment, but a very small number of men may develop chronic pain that might require vasectomy reversal or other surgery.

I need to know to which topic you have objections, and also a bit more of your background (eg, are you a primary care provider, urologist, or pain specialist), so we can best respond to your inquiry.

Thank you."

I take issue with the ‘very small number of men’ - it completely leaves out the 1-2% severe chronic pain with negative impact on quality of life (AUA) and the milder chronic pain patients 14% (CUA).

The wording makes it sound as though it just ‘gets better’ which we all know, it really doesn’t.

Can someone here please help me compile a bunch of PVPS articles to send to these guys. Quite frankly, they should have a page dedicated to PVPS. It is common enough after all.

Thanks for the help guys.

This is very interesting, is there a bit of an “edit war” here.

Vic posted this in the past: https://blog.crankycoder.com/2013/03/11/you-can-call-me-the-doctor/

At which point 2% was to be used.

It’s certainly interesting that the UK NHS as a state healthcare system is explicitly using one in 10, for comparison to the AUA and Up To Date numbers.

I think these kinds of conversations are probably the ones which are drawing some of the “wrong sort” of attention to the board.

We are not advocating for or against vasectomy here, just making sure there is awareness of the complications, specifically chronic pain that can occur. We are pushing to have the existing numbers mentioned every time there is a discussion of vasectomy risk. That’s not too much to ask.

When guys come here that have not had vasectomies and are asking our opinion we should do the same thing. Don’t advocate, just point them in the direction of the established agreed upon numbers being used by the NHS, CUA and AUA.

This is not an “Anti-Vasectomy” site. It’s a self help site for chronic pain and a support group for pain sufferers primarily. I’m not militant against vasectomy, just the way they are pushed, marketed and sold. If vasectomy was a pill it would probably be illegal based on the just the AUA guidelines alone. We all know there are gender, and birth control politics involved. As long as we are clear we are not advocates one way or another then we should be fine.

That doesn’t mean we should not call out and condemn providers that are ignorant of the risks, are in denial about the mess they sometimes (unintentionally) create. The informed consent thing needs to happen. This place can also serve to help remind physicians that there is now an archive/artifact where their patients can document their bad outcomes. It’s harder to say you’ve never had a bad outcome when you have a patient talking about having his epis or testicles removed to control pain post vasectomy.

Absolutely.

Every man considering a vasectomy needs to be told the truth by their DOCTOR. Not by some guys on the internet suffering from chronic pain.

Most guys would still go through with a vas, even after being told the 1 in 50 chance of chronic pain that’s very difficult to fix, but a lot wouldn’t, and at least that’s informed consent.

The 14.7% number for mild pain/discomfort or troublesome pain needs to be mentioned as well, but 1 in 50 for severe, life changing pain is a damn good start to proper informed consent.

We can’t undo the damage that’s been done to ourselves, but we can educate people about the procedure.

Back on topic, can someone provide me with some links to various PVPS articles. I remember @victor had quite the collection going on, dating back 30 years or so.

Yes there are still plenty of guys that would go through with it. Pain is an abstract concept. If you are not in it you can’t comprehend how disrupting and dominating it can be over every aspect of your life. People can’t comprehend it, especially when it involves seemingly benign activities like sitting, bending over etc… and every man wants condom free worry free sex.

There are plenty of guys and wives that would not subject their partners to the risk though if those numbers were part of the sales pitch. And that’s exactly what those “consults” are. They are sales pitches.

I think this is probably the Vic post you are after:

I also very much agree that men should be given reflective quantified chronic pain risks. I had a pain flare 10 days ago in spite of a reversal and very much wished that I had been while it was going on

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.”

http://www.nhs.uk/Conditions/contraception-guide/pages/vasectomy-male-sterilisation.aspx

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.

1 Like

I think that is pretty good, I am still glad I had the reversal done. I suspect running a very severe 19m mountain trail race triggered my pain flare. So it was pretty much self inflicted. Long duration full intensity exercise does seem to trigger things unfortunately.

I have had similar flares through spending a week on a training course sitting in a very hard chair. And I usually get a small flare right before I take a cold or flu which seems to point to an immune privilege component.

Vs. pre reversal where I used pain relief every day I can live with that. The reversal was good success and is a 95% fix, but I still have a few probs now and then. Maybe 10 days per year where I take mild pain relief like ibuprofen, and about 2-4 where I use Naproxen or very very occasionally 8/500 Co-codamol.

Are you a lawyer because that was eloquently written?

LMAO no I’m not, but I guess it kind of sounds like a lawyer’s letter, doesn’t it?

But thanks for the compliment anyways :blush:

I kind of have a feeling the doc reviewing it will just slough it off, but I mean how could you really? It’s pretty compelling.

This might be useful to include, it has two groups, 10 years apart, with 15% pain in both, indicating non-surgical pain:

Early and late morbidity after vasectomy: a comparison of chronic scrotal pain at 1 and 10 years. Manikandan R, Srirangam SJ, Pearson E, Collins GN. British Journal of Urology Int. 2004

1 Like

How does denervation have the highest success?! Ummmm not sure about that. Great post though. If i ever sue im having my lawyer read that post

I think this man may be the originator of the the 1 in 1000 we hear a lot:

Marc Goldstein.

He was one of the authors of the chapters in Cambell Walsh Urology
“Surgery of the scrotum and seminal vesicles”-Sandlow JI, Winfield HN, Goldstein M.
That’s where the number was cited in the Tandon Sabanegh paper in 2008 so it is highly likely it was in there already.

He also wrote this NYT article which cites the 1 in 1000 stat.


Note the date on this is 2008 as is the Tandon Sabanegh paper.

Here is the link where Victor finds the faulty circular citations/references.
https://blog.crankycoder.com/tag/campbell-walsh-urology/

Goldstein is a highly regarded Urologist and specilizes in both vasectomy and fertility/microsurgical reversals. He helped pioneer the no scalpel technique in the US.

I am not sure how it happened but I believe it’s possible Goldstein included that statistic in his chapter in Cambell Walsh and it was then referenced in a paper and then Cambell Walsh was upated to reference the paper. I think it would be interesting to see the evolution of this circular reference by going back and looking through the text of the different editions of Campbell Walsh.

Another thing about Goldstein, his name has come up several times for me over the past few years. I saw his article in the NYT years ago and noted the 1 in 1000 number but I had no idea he wrote the section of Cambell Walsh where the number originated. He is also on the “Medical Advisory Board” of Theralogix, a urology and fertility supplement company founded by one of my original Urologists (Robert J Sher) partner Mark Ratner. Here is the link where you can see Goldstein on the board of this expensive vitamin/supplement company.

http://www.theralogix.com/about-theralogix/medical-advisory-board/

When I started having problems, the guy that performed my vasectomy at one point gave me a “prescription looking” piece of paper with a number on it and told me I should try one of the Theralogix (his partners company) prostate supplements. He did not explain to me that the “discount number” was designed to give him a commission on the sale of the expensive SawPalmetto/Vitamin E supplement (or whatever it was) he was selling me to alleviate pain the vasectomy he gave me was causing. He told me for 3 years my pain was due to prostate problems. So here is Goldstein again working with these guys or at least helping raise their profile, likely for a fee or as an investor/seller of their “nutrion based science” supplements. The other crazy part is Theralogix works out of the same small building in Rockville on East Jefferson street where I had the vasectomy that changed my life. Here is a picture you’ll see if you Google “Theralogix”

That’s the end unit. My vasectomy was performed a few doors down on the right. At one point on a Youtube there was a video of the founder Mark Ratner what appeared to be a staged/fake interview/infomercial about Theralogix products where the caption under him was “Marc Goldstein”. Just kind of wrong if you ask me. Are you a urologist or a vitamin salesman? Are you selling your patients this stuff because you believe in it or to make some money on the side? Also, if you are willing to recommend your patients buy supplements and are not honest about the commission and use referrals that almost look like prescriptions what does that say about you ethically? These guys are walking a line that borders on profiteering off of men and women’s suffering. What wouldn’t a man with prostate or pain problems or a women with fertility issues or fibroids spend to alleviate their issues?

The Theralogix supplement I tried btw made my symptoms worse. It was pretty expensive too.

I want to add one more funny item to this long post. Look at this thread about Theralogix products and who shows up about 5 posts down.

http://forums.webmd.com/3/urology/forum/45/1

Dr. Marks! He is extremely critical of the supplement industry in general. It reinforces my belief that there are good/ethical guys and there are shady guys and he is truly one of the good principled guys.

I also want to add that with Theralogix you have physicians acting like drug companies prescribing their own medicinal supplements (that as Dr. Marks states have virtually no regulation) directly to their own ailing patients. They often do this, as they did with me, in a deceptive manner. That seems kind of sleazy and wrong to me.

1 Like

I’ve heard of Marc Goldstein, and it’s funny you mention that, because I very recently found an article written by him that he had performed 1000 vasectomies (NSV) and had no incidence of chronic pain.

Statistically speaking that’s impossible and I wonder what he told his pain patients when he saw them. Or if he even saw them after the surgery. I know mine wouldn’t, just said wear the support, take naproxen.

The guy who did mine (Ronald Weiss) was kind of like a Marc Goldstein of Canada. He brought the NSV technique to Canada and is seen as a ‘pioneer’ and works out of the basement of a house in Ottawa. He also has his own fictitious number of 1 in 10,000. But he’s not a urologist and he doesn’t do reversals. Just a general practitioner with training in minor surgical procedures.

What could go wrong? :rage:

My neurologist has a great saying, “if you never accept you’ve had a bad outcome, you can always say you’ve never had a bad outcome.”

I would like to get Marc Goldstein on record and see how he tries to reconcile his 1 in 1000 claims with the medical guidelines of Canada, the US and the UK. I want him to explain the scientific basis for that number. I also want him to explain how he thinks that circular reference got started in Cambell Walsh.