Things I wish I’d known three years ago

Here are the current American Urological Association guidelines for male urethral stricture. They were apparently published about a year ago.

A couple of sections from the executive summary are especially interesting for me:

4. Clinicians planning non-urgent intervention for a known stricture should determine the length and location of the urethral stricture. (Expert Opinion)

and

15. Surgeons should offer urethroplasty to patients with penile urethral strictures, given the expected high recurrence rates with endoscopic treatments. (Moderate Recommendation; Evidence Strength Grade C)

It seems like the expert opinion is now much firmer that there’s no point even attempting urethrotomy on penile urethral strictures and also that it’s important to determine the length and location before deciding on any surgery.

Of course pretty much everything in those guidelines is “expert opinion” (the panel agrees but there’s no evidence either way) or a recommendation without particularly good evidence.

If I hadn’t trusted the doctors back at the start of this whole ordeal, back in 2014, and done some research I might have found the earlier studies and articles that these guidelines have come from. In that case I’d have insisted that they determine the length of the stricture before surgery but instead I assumed they knew what they were doing and let them do that first urethrotomy.

So a surgeon with no idea of what he was dealing with hacked away at my urethra and either worsened an existing long stricture that should never have been treated with urethrotomy or turned a short and relatively easily treatable stricture into a mass of fibrosis. There’s now no way of knowing what the situation was before the urethrotomy and local urologists are very shifty when discussing it.

Added page with articles and studies

I’ve added a page with some references to articles and studies about urethral strictures and their treatment that I found useful while I was dealing with doctors who weren’t very familiar with the subject.

Knowing when they don’t know what they’re talking about is very useful. It also gave me some reassurance that I was making the right decisions about my treatment.

The return of the stricture

Before the infection I’d had a couple of days of enjoying peeing normally, with a really strong flow. After the infection I assumed that the flow was being restricted by my swollen prostate. Once my prostate was back to normal it was obvious that the stricture had recurred within a month of the urethrotomy.

Reading the research on urethral strictures it seems that urethrotomy is often unsuccessful with strictures of the penile urethra, especially if they’re quite long. In some places they’re recommending doing urethrography to check the size and location before performing urethrotomy and in some cases going directly to urethroplasty instead.

At my next visit to urology, three months after the urethrotomy, the doctor was determined that the standard treatment was to repeat the urethrotomy. Fortunately I’d prepared and was able to insist that all current research indicated that the first one had been pretty much doomed to failure and any successive urethrotomy had almost no chance of success (due to the location and speed of recurrence). After trying to scare me with warnings of the dangers of urethroplasty he finally gave in and agreed to refer me to a more senior urologist.