Urinary Retention after Radiation

[MSP61]

I completed a 5-course proton radiation treatment in April of 2021. I was Gleason 3+4 with a PSA of 5.0. My PSA has come down nicely but has had some bump-ups since treatment.

Here is my history of bladder issues since treatment:

- May 2021 - UTI

- Aug 2021 - I thought I had another UTI, but was diagnosed with bladder spasms caused by the radiation treatment and was prescribed Oxybutynin ER 5 mg daily.

- Jun 2022 - UroFlow test - Prescribed Flomax instead of Oxybutynin, but after a month of trying this, the pain from bladder spasms was worse, so switched back to Oxybutynin.

- Jul 2022 - Cystoscopy - No concerning findings, but some "increased hypervascularity" which means that the blood vessels in your bladder are more prominent, but this is a normal finding after someone receives radiation.

- July 2023 - UroFlow test again - "Urinary Retention" diagnosed. I was voiding only about 50% of my bladder. Directed immediately to start to self-catheterize 4 times a day. Prescribed Flomax 0.4 mg daily and doubled Oxybutynin to 2 5 mg daily.

- Aug-Nov 2023 - 3 different UTI's, about 6 weeks apart.

- Nov 2023 - Urodynamics Test - "showed severe detrusor under activity. Findings are consistent with an acontractile bladder on this study with no evidence of bladder outlet obstruction."

The options I have been given are:

1) Continue self-catheterizing indefinitely. I thought that I might get used to it, but it does cause quite a bit of pain and discomfort, so I don't think this is a sustainable solution.

2) A permanent catheter.

3) "Sacral Neuromodulation" procedure, which is a device implanted that acts like a 'pacemaker' for the bladder. This option may not completely remove the need to self-catheterize but should reduce the frequency, for example, 1 or 2 times a day instead of 4 times a day.

Has anyone else had "Urinary Retention" issues after radiation that have other solutions? I asked about surgical options and was told that it could cause leakage issues (just the opposite of my problem now).

Any ideas on how to make self-catheterization less painful and less likely to produce UTIs?

Thank you.

[Tall_Allen]

Catheterization has a high rate of UTIs. Is hyperbaric oxygen an option?

[MSP61 in reply to Tall_Allen]

I really try hard to be clean when catheterizing, but it still happened 3 times. They suggested I try Betadine (Povidone-iodine). I will look into hyperbaric oxygen. Thanks.

[Tall_Allen in reply to MSP61]

It's not your fault. Bacteria are inside the tissues. When the catheter touches the tissues it spreads the bacteria. I have a friend who is a nurse specializing in infection control who tells me UTI-causing bacteria colonize within the tissues and catheters always spread the bacteria.

[TonyTx]

Sorry to hear all the problems you’ve had. I’m undergoing radiation right now. This is probably something you’ve already done but would just encourage another urology opinion. I know there are so many drugs available to help with flow issues. It seems odd that you have detrusor atony but you are or had had having spasms. The first would indicate lack of muscle activity but the second would indicate over activity. There are a lot of meds out there. I would just make sure they’ve exhausted all the drug trials you can do.

[MSP61]

One thing the urologists have not mentioned, but I've seen it mentioned in a few resources for possible cures for retention is 'pelvic floor' (aka Kegel) exercises. Has anyone successfully used pelvic floor exercises to treat urinary retention? If so, I'd like to know details. I know this type of exercise is used for leakage issues, but haven't heard as much about retention.