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Posted 9/15/2015 10:26 AM (GMT 0)
Hi All

Less than 2 weeks into salvage radiation treatment (July 2014) I started getting pain on urination. This was put down to radiation cystitis, even though this was way too early. The pain never really let up and then started increasing, and earlier this year a stricture was diagnosed, relieved a little by a cystoscopy.

Couple months back, I noticed that the urine flow was being constricted again, and the urologist diagnosed a bladder infection. Was in the back of my mind (and the surgeon's) that I would need some sort of intervention in the medium term.

3 weeks ago, the plumbing just closed up, nothing but blood coming out. Off to the emergency room, catheter in and 2 nights in hospital. Then a week later, back in for an operation to reduce the stricture, and also to widen the bladder neck. Flowing like a good-un now, still smarts a bit - but better than it has for a couple months.

One bonus from the whole episode is that I had an extra PSA test on a more sensitive scale, which came back at 0.01 (dont know if there was a less than sign involved at the time of receiving result I was still drugged up - frankly not concerned about that one).

So my question for the forum is - what now. I think I am going to have to self catheterise on a regular basis to keep the stricture open, and ensure complete bladder emptying. Anyone have any experience of this, and are there alternate remedies - really not keen on the self catheter part - although I dont think it could be anything like the discomfort of wearing a permanent tube.
Posted 9/15/2015 11:30 AM (GMT 0)
Hi Alan - I've nothing on the medical issues, but have know men who self-catheterized for extended periods and, though a bit of a bother, with a little experience it wasn't difficult or uncomfortable.
Posted 9/15/2015 2:27 PM (GMT 0)
Alan,

I'm 5 years out from RT, almost 6 from surgery, and just over the last few months strictures have become an issue.

I've been back three times for dilations, about 6 weeks between each. Not pleasant, but at least I now know what to expect. All indications are that I will have to continue this.
Posted 9/15/2015 2:28 PM (GMT 0)
Sorry to hear about your stricture, no fun at all not being able to urinate.

I developed a stricture from surgery and had similar symptoms, a cystoscopy dilation and finally a laser DVIU to open it up. Thankfully I'm still at full flow about 6 weeks post DVIU.

After the cystoscopy I was instructed to self-cath daily with a 16fr and to go all the way to the cuff. I can say it was an unpleasant 2 minutes of my day but more of a mental hurdle than a physical one. It only became significantly painful towards end when the stricture was closing up and I had to wiggle the cath past the stricture. Unfortunately for me the self-cath did not work and a short time later I ended up with the laser DVIU.

I would agree with you, the self-cath would be much better than the tube if it works for you. After a couple weeks it almost became routine.

Jon
Posted 9/15/2015 8:14 PM (GMT 0)
Alan: I had an issue like you, I did a lot of education and actually found some information that you might want to look at. Here's a link:

https://www.centerforreconstructiveurology.org/

I spoke to Dr. Gelman and he changed my opinion of stricutres, I ultimately decided to be treated a little closer to home but this guy is one of the best I understand.

Just some information.

David
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