Category Archives: vasectomy

You can call me The Doctor

tl;dr – I’ve killed the 0.1-0.25% occurrence rate line in UpToDate. Your doctor can verify the change in the section “Vasectomy and other vasal occlusion techniques for male contraception”. The newly revised number is simply : 2% for severe life quality affecting pain. Your doctor may not be aware of this as the change is not listed yet in the changelog that UpToDate provides users.

Edit: UpToDate has no intention of making this more visible.

No, it is not an oversight that the change is not in What’s new. Only selected topic updates will appear there, and generally those that represent significant alterations in treatment-related decisions.

So I had my surgery on of all day’s – Valentine’s day.

As they wheeled me into the operating room, I told one of the nurses that I was hoping an entirely different kind of valentine’s day. In a southern drawl, she said:

You just tell the boys back home that you were naked with three cute brunettes.

So, it’s been 3 weeks post-op and I’m happy to say that it looks like surgery was successful.   There’s still another 3 or 4 more months to go to be completely sure, but right now – things look really really awesome.

That would be enough for me to do the happy dance, but the thing that’s had me grinning from ear to ear since Friday?

I got my edit to UpToDate accepted.  It’s a small tiny edit, but it’s one that fixes an error that’s been perpetuated for about 30 years near as I can tell.

For those that are unaware, UpToDate is a massively deployed clinician’s database used by doctors around the world as a decision support resource. It’s used by 700,000 doctors globally. That’s a lot.  When I first started posting up on Reddit a couple months back, a redditor pointed me at the numbers in UpToDate as a reference that all doctors are going to use as a point of reference.

Before March 1, 2013, you would have found this in UpToDate:

The post-vasectomy pain syndrome is distinct from post-procedure pain, however, there is some controversy regarding its definition, and therefore prevalence. Rates for the post-vasectomy pain syndrome have been reported as 0.1 to 0.25 percent [41,42]. However, surveys have found that “troublesome” post-vasectomy pain is reported by as many as 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 [43,44].

That bold section is gone now.  Without it, it reads quite differently.  It looks like this now:

Historically, rates for the 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 about 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 [40,41].

I’m annoyed still that the <1% number shows up at all.  The two works cited by UpToDate in the newly revised text only show data that support the 15% occurrence rate.  You can read it yourself in Manikandan 2004 and McMahon 1992.

UpToDate has this to say on the matter:

Incidence reporting in the literature varies widely, The lower incidence figures reflect older literature, with the more contemporary data suggesting that the incidence of this problem is probably higher.

(emphasis is mine)

This weirdly reminds me of watching traders dissect the wording of the Fed every time a rate announcement is made in an attempt to find the ‘true’ meaning of the wording. I think my chinese ancestors called this “reading tea leaves”.  But I digress.

The snarky part of me wishes they’d reword the first sentence to “Historically – we couldn’t bother to do division properly, or read anything.”.  Just before I left for Winter Haven, I ended up pulling the articles cited in UpToDate.  What I found was pretty bad. You can see the full details here.

It turns out – the M in MD is not for math.  Of the two citations, one was a completely different topic, and the JAMA study from 1984 never made any claim that supported the 0.1 to 0.25% occurrence rate.  In fact, the study in 1984 explicitly shows 187 patients out of 10,590 had chronic pain.

I guess calculating 187/10,590 is a really hard thing to do.

The literature does vary widely, but as far as I can tell – there’s still no evidence to support the historical figures.   We can argue about the strength and validity of particular studies, but you don’t get to argue about numbers that just aren’t there.

As they say:  Every man is entitled to his own opinion, but not his own facts.

This kind of mistake happens all the time.  If you haven’t been following the mess going on in cancer research or the debacle that’s going on in academia with respect to peer review – it’s a disaster.   Statistical errors happen all the time now – it’s estimated that it’s happening ~15% of the time.

That though is a rant for another day.  Today – I’m celebrating my small victory.

On a side note – every email I ever got from UpToDate was addressed to “Dr. Ng”.  If anyone else wants to call me “The Doctor” – I’m totally cool with that.

Next post – something entirely nerdy.

CUA finally responds

Well, it took a long time – 4 months to be precise – but the Canadian Urological Association finally responded to me.

Starting back in October 2012, I asked them to review the literature that they provide urologists – who in turn provide information to patients about post-vasectomy pain risks.  I didn’t get a response, but I followed up with several emails, some phone calls.  Not much luck.

I ended up getting in touch with Keith Jarvi – the director of Mount Sinai’s Urology program (Keith was a peer-reviewer for the AUA guidelines).  He kindly contacted the president of the CUA with my concerns and it looks like the guidelines committee at the CUA has finally come to a decision.

But first – some context:

The CUA provides a single pamphlet of information to patients.  The only reference to pain is:

Some men have scrotal pain that persists for a few weeks or months. Over time, this usually resolves completely without specific treatment, although rarely this discomfort may persist.

CUA pamphlet

The American Urological Assocation is pretty different.

The minimum and necessary concepts that should be discussed in a preoperative vasectomy consultation include:

…[some text removed]

Chronic scrotal pain associated with negative impact on quality of life occurs after vasectomy in about 1-2% of men. Few of these men require additional surgery.

AUA Vasectomy Guidelines

Maybe it’s just me, but the CUA makes it sound like the worst case is pretty innocuous.  ‘Discomfort’ is a lot less alarming to read than “negative impact on quality of life’.

So here’s the less than ideal response I got back tonight.

Dear Mr. Ng,

I would like to inform you that your concerns have been raised with the committees that deal with guidelines and pamphlets, and appropriate consideration has been given. The final conclusion was that the information currently provided on the subject of post-vasectomy pain was suitable as written.

Thank you,

Karen Psooy, Secretary CUA

Next week, I’m heading down to Florida for microsurgical denervation.  It’ll be paid out of paid out of pocket – insurance won’t touch it.

I’d consider getting it done in Ontario, except I can’t seem to even get call back from the pain management clinic at the hospital.  I’d even appreciate a “sorry – we’re too backed up here – go somewhere else”, but apparently – that’s too much to ask for.

At this point, I’ve had it – so off to America.

Your healthcare system may suck America, but at least they fucking call you back.

Edit: fixed my borked links to the CUA and AUA guidelines

PVPS journal articles from the last 20 years

Spider Jerusalem's classic poseSo I promised articles from the last 20 years that indicate that the incidence of new onset, chronic pain after vasectomy is much more common than the CUA will acknowledge.
So here’s the journal articles.  I’ve included all the articles I’ve curated over the last year.
To start, we’ll look at the CUA vasectomy guideline.


Vasectomy Reversal research:

Other stuff:

Progress! AUA changes PVPS stance.

The American Urological Association is now acknowledging higher rates of PVPS than the urological text books describe.

Chronic scrotal pain associated with negative impact on quality of life occurs after vasectomy in about 1-2% of men.

Local Copy
AUA Copy

This is big news.  Urologists have been telling patients that PVPS is 0.1% to 0.25% based on the studies in UpToDate.  We’ve just gone from 1 in 1000 to 1 in 50 odds.

How 15 minutes of surgery turned my life upside down

For the last year, I’ve been working at Mozilla – I just noticed that my 1 year anniversary just passed this month.  Craziness.  Mozilla really is amazing.  I’ll say what everyone says – everyone I’ve met is a genius except for me.  Maybe more amazingly, the people are just amazing human beings.  I feel privileged to be able to work with such great people.

Now the bad news – I had a vasectomy last year in April 2011 and it’s been a nonstop cluster fuck of chronic pain every since.  The clinical term for this is post-vasectomy pain syndrome (PVPS).  Now – normally I don’t think swearing really helps a blog post, but when it gets to the point where you are considering filing for long term disability and the option of selling your house and cashing in your critical health insurance becomes a very real option – then I think “cluster fuck” is a perfectly reasonable thing to say.

The short version of this story is – urological doctors and surgeons grossly misstate the risks for modern vasectomy surgery.   The best available studies for the last 20 years have replicated the results fairly consistently, so I can only conclude that surgeons don’t read their own literature, or worse – they are being disingenuous and risking the safety of patients.

If you’ve thought about getting a vasectomy, go now and see your family doctor and a urologist to see what risks they give you.  I’ll wager they’ll tell you the risks are < 1/1000 or possibly 1/10,000 for any kind of complication.  If you ask the Canadian Urological Association:

The actual risks are actually very high.

  • 15-30% of vasectomy patients will experience chronic pain for up to 8 months.
  • ~2% of patients will have adverse life quality affecting pain
  • 1% of patients will have life long chronic pain
  • There are no preoperative (age, socioeconomic status, race, environmental factors), operative (technique of vasectomy) or postoperative (particularly related to antibody response) factors have been identified to accurately identify patients at risk of PVPS.

Those results have been reproduced in the United States, Britain and Germany with thousands of patients.

This is insane.

I’m 36.  My balls feel like they’re burning 24 hours a day.  7 days a week.  I don’t sit comfortably anymore. Sitting in trains or cars is extremely painful and frankly, I get frustrated enough that I’ve punched holes in walls.

I’ve learned a lot in the last year about PVPS.  How common PVPS is; how a lot of men feel shame in speaking to other people about it; the crazy world of pain medications; and how our medical system doesn’t do some of the things we think it’s supposed to.

I’ll try to make posts weekly and share what I’ve learned and maybe we can fix things in the system.

We deserve a better healthcare system.

edit:  I’ve been asked by several people for some citations and references.  I’ve got lots.  Give me some time to put them up.   Here’s one for you :

Awareness of the risk of chronic pain is particularly relevant when patients wish to have surgery for reasons other than illness or disability, for example, male and female sterilization and some cosmetic surgery operations, which may be performed for aesthetic rather than medical reasons. Chronic pain after vasectomy has been the subject of several studies. These show an incidence of around 15%. A review article in 2003 examined the possible mechanisms in relation to changes that occur after vasectomy. It is disappointing then to find in a recent publication on sterilization the statement: ‘Whether a postvasectomy pain syndrome exists remains controversial’.

Macrae, W. A. (2008). Chronic post-surgical pain: 10 years on. British Journal of Anaesthesia, 101(1), 77–86. doi:10.1093/bja/aen099

Wow.  Response to this has been kind of overwhelming.  Here’s a link to the seminal work on PVPS. It’s from 1992, but the results have been replicated in more recent literature which I’ll post up today.

Significant early post-operative complications occured in 6 patients (3.5%).  Chronic testicular discomfort was present in 56 patents (33%), considered by 26 (15%) to be troublesome but not by the otehr 30 (17%).  Testicular discomfort related to sexual intercourse occurred in 9 cases (5%). Only 3 patients regretted having had the vasectomy because of pain (1.7%).

McMahon, A. J., Buckley, J., Taylor, S., LLOYD, S. N., Deane, R. F., & D, K. (1992). Chronic Testicular Pain following Vasectomy. British Journal of Urology, (69), 188–191.