So after sending emails and messages to the local urology consultant who I was supposed to talk to on the 28th I suddenly got a phone call from a nurse on Friday morning asking if I could see him at 11:15.
Thinking the point of the meeting would be just to discuss what to do next I quickly got in touch with my husband and he managed to get away from work so he could join me.
I was a bit surprised when my name was called in the urology department and the nurse led me into a treatment room and asked me to remove my clothes, since the consultant would be doing a cystoscopy. There’d been no mention of that in the phone call.
Even better, once I was prepared the consultant shows up quite obviously without having read through my notes or made any effort to remind himself of my case. My husband and I had to go through the whole history of surgeries, some of which the consultant himself had performed.
Anyway, he started doing the cystoscopy and, as I’d expected, couldn’t get more than a centimeter or two in before reaching the new stricture. For once I could actually see the screen myself. The good news is that although the stricture is quite severe (I’d guess narrowed down to about 1 mm diameter) it looks like it’s short and the tissue is still looking quite pink and not too scarred.
The consultant then wanted to immediately start sticking in a guidewire, apparently with the intention of poking a catheter in there or something. My husband nearly leapt on him and explained why that was a bad idea, something you’d expect a urologist to know.
He responded very sullenly (his manner had been curt and dismissive the whole time) with “so what do you want me to do?”. I’d actually already told him in the emails and messages I’d sent but apparently he hadn’t read them.
In the end he agreed to request urethrography, so that we can get an accurate idea of the extent of the new stricture, and to forward the results to the surgeon who’d performed the most recent urethroplasty.
Now I just have to hope that they can schedule the urethrography quickly, that the radiologists have some idea what they’re doing and that I can get this stricture treated before it becomes much worse.
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)
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.
I had my uroflowmetry appointment up at the hospital this morning, the results look like this:
The graph really shouldn’t be that long, or that flat and the peak should be much higher. Qmax (the peak flow) should be somewhere over 15 ml/s, I managed 4.1 ml/s. So the stricture has recurred, or a new one has formed.
It’s felt for the last few weeks like the flow is restricted at the far end of the graft area, where it joins the original urethra. That was where they removed some scarring during the most recent surgery and patched it with a bit of skin. It seems like that patching hasn’t worked.
So now I’m back in the position of being barely able to pee and desperately trying to persuade a bunch of doctors that it might be worth doing something about the problem soon, before it gets worse. The local hospital couldn’t even manage to have me see a doctor after I got the results. Instead they’ve booked a time for him to call me, on the 28th of April!
I’m pretty fed up.