Over the summer I gradually reduced the frequency of dilatation and I’m now down to once a week. It seems a lot like that’s how it’ll continue, unless someone comes up with a miracle treatment for difficult recurring strictures.
The dilatation itself is pretty quick and easy. By the end of each week the flow gets noticeably worse but after I’ve poked the stricture with the catheter it goes back to normal.
I still have very little sensation on the underside of my penis and I doubt that’s going to improve now. But apart from the surgery scars it’s looking more or less like it used to.
So the current situation is not really what I was hoping for at the start of the whole saga but I’ve decided that any further surgery is likely to only make things worse.
Since the urethrotomy and infection things have been pretty OK. I’ve been dilating daily, apart from a brief attempt at reducing it to every other day. When I did that it was getting much harder to push the catheter through the stricture so I thought it best to go back to doing it daily.
The main problem has been one of bureaucracy. After the urethrotomy I got a box of 30 dilation catheters and the nurse told me to ask my local urology department to prescribe me more. I contacted them and asked for dilation catheters but they sent me normal drainage catheters, with the small holes for urine to flow through, rather than the completely smooth dilation catheters.
It turns out that dilation catheters are a special order, not on their usual list, so the request had to go up the hierarchy for approval. Four weeks later I was running out of dilation catheters but had managed to extend my supply by requesting some free samples from the manufacturer. The urology nurse claimed she’d ordered them but they still hadn’t turned up.
So for the last week or so I’ve been using the normal catheters. I can feel the holes catching on the edge of the stricture and they seem to be scraping the graft/neourethra, causing some burning when I pee.
The dilation catheters have finally turned up and as far as I can work out from the shipping information on the box they weren’t shipped until the 28th of June.
The next step is probably to have another try at reducing the frequency of dilation.