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

Silver linings

So I was going to post more, but life happened.

This is going to be a short one.

Despite PVPS taking up more of my attention than I’d like, lots of other things have been really great this year.

The kids are getting smart. Possibly too smart. 

Rosie is picking up piano at a startling pace. I think the kid has some natural talent there.

I also decided to get some exercise starting in May.  I’ve since shed 4 inches off the waist and gained enough strength to be doing double handed exercises with 45lb kettle bells. 

Parallette work is coming along, I can almost do a proper L-sit, and running 5-7km is pretty easy for me now.  Not too shabby for a former couch potato.

Have a great year everyone!
Vic

Testosterone therapy

Managed to dig up a full text copy of the 2007 paper by E.J. Pienkos on testosterone therapy for PVPS patients.

Not much data to see, and like most papers – it’s pretty thin.

Still – it’s better than only getting the abstract from PubMed.

The use of testosterone in the treatment of chronic postvasectomy pain syndrome: case report and review of the literature.

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.

PVPS:

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.