I had my x-ray appointment a couple of weeks ago. It seemed to go much more easily than previous urethrograms; having a suprapubic catheter makes it much easier to fill the bladder with contrast. Unfortunately it turns out that the urologist had only ordered a voiding cystourethrogram and not a retrograde one.
That meant that there was too little flow after the stricture to fill the urethra. The radiologist initially concluded that there was a huge stricture all the way from the inner end of the graft right to the meatus. They looked at the pictures again, together with the urologists, and decided that instead it’s two very narrow strictures with about 5 mm between them.
Of course, it’s impossible to tell how long the outer stricture is, or anything else about the urethra after that point.
I’ve been communicating with one of the urologists by email and he seems oddly resistant to the idea of doing a retrograde cystourethrogram. The current delaying tactic is to ask a colleague in another county for advice. That of course means letters going back and forth in the post, so it’ll be at least another week before they hear back from him.
So it seems I’ll be stuck with the suprapubic catheter for quite a while longer. There’s basically no chance of getting anything useful done before Christmas now.
Here’s an animation from the cystourethrogram. You can clearly see how the urethra upstream of the stricture gets stretched by the pressure and how long it takes for the urine/contrast to get past the stricture.
I was kind of excited and nervous all day, sort of more nervous that before the urethroplasty, because it was the day I’d find out whether I’d be rid of the suprapubic catheter.
After lunch I took the bus up to the hospital and after a short wait it was time to change into one of the lovely hospital gowns and go into the fluoroscopy room. This time we could skip all the messing around trying to squirt contrast up my urethra and just run it in through the suprapubic catheter. It took over an hour anyway but I managed to get over the weirdness of peeing on demand while lying under an x-ray machine and they got some good pictures.
In the first picture you can clearly see the stricture before the urethroplasty (but after the urethrotomy). “Mynning” is the tip of my penis and “kateterspets” is the end of the catheter they were using to put contrast in. All the stuff around the tip is the hand of the nurse who was holding everything in position.
The next two are the new pictures after surgery. You can see that my urethra is now a decent width all the way along. There’s a slight narrowing marked around where the graft is but it’s possible that was just a blood clot (a big lump did come out while I was peeing).
After x-ray it was time to go down to urology and see what the surgeon thought. He seemed very happy and said they’d remove the catheter. He was also asking about how the graft donor site in my cheek was doing. It seems he was used to putting in stitches but had left it this time on advice from his visiting colleague. From what I’ve read having stitches is much worse from a patient’s perspective and my cheek has healed quickly and well. I asked him when I could start having sex again and he said I could as soon as I felt ready. When I pressed him a bit he said maybe waiting another couple of weeks would be a good idea.
The nurse came to remove the catheter. After she cut the stitches holding it in place I felt a tug and thought it was out. Then there was another tug. Then a long pulling sensation. It seemed that there was roughly 20 cm of catheter coiled up in my bladder!
It was so nice to be able to walk home without the catheter irritating my bladder and to sleep without worrying about tangling catheter tubing. I really enjoyed my shower this morning.
Peeing is also a joy, with a good strong flow. There’s still a little bit of stinging and some bleeding afterwards but that should pass.
The radiology staff didn’t seem especially familiar with the procedure, so even with a large crowd coming and going and giving advice it took over an hour. They seemed to have used too much numbing gel; every time they tried to inject the contrast the catheter would pop out.
The RCUG was eventually successful but the VCUG didn’t work so well. I found it very difficult to urinate on demand while lying on my side and having not had anything to drink for a couple of hours.
My x-ray appointment was at the end of January but I couldn’t get an appointment with the urologist until mid-March, partly because I was away quite a lot during those months.
When I finally saw the urologist he was the first doctor I’d met in the urology department with any bedside manner and he was very open to discussing the options.
I’d used the time before the appointment to continue my research and I’d found that in the few studies that actually tried to evaluate patient satisfaction buccal mucosal graft (using skin from the inside of the mouth) did better than penile flap (using skin from the penis) urethroplasty. It seems that the cosmetic results are better, there are fewer problems with skin tightness and less post-urination dribbling with the buccal mucosal graft.
The doctor would have preferred to use a penile flap and was more familiar with the technique. I had an especially awkward moment lying exposed on the examining table when he told me that there seemed to be plenty of spare skin and I had to try to explain that that’s not the case when my penis is erect.
He’d already discussed my case with a colleague in another county who had more experience with buccal mucosal grafts and we agreed that we’d go for that option and that he’d bring in his colleague to assist with the surgery.