Urge to urinate & pain and burning due to radiation: Tips?

69 PSA 7.32 Gleason 7 (4+3) PI-Rads 4, HDR Brachytherapy, EBRT 15 sessions , ADT 6 months. EBRT finished June, ADT finished October 24. Severe pain when passing urine in my penis/ Urethra. Had medications from Oncologist, same result.

69 PSA 7.32 Gleason 7 (4+3) PI-Rads 4, HDR Brachytherapy, EBRT 15 sessions , ADT 6 months. EBRT finished June, ADT finished October 24. Severe pain when passing urine in my penis/ Urethra. Had medications from Oncologist, same result.

69 PSA 7.32 Gleason 7 (4+3) PI-Rads 4, HDR Brachytherapy, EBRT 15 sessions , ADT 6 months. EBRT finished June, ADT finished October 24. Severe pain when passing urine in my penis/ Urethra. Had medications from Oncologist, same result.

Have you tried thus?

Pyridium (phenazopyridine) is specifically used to relieve the burning, pain, urgency, and discomfort associated with urinary tract irritation, which often includes the burning sensation while peeing.
It is available over the counter

I'm sorry to hear that. Most post-radiation complications are mild and disappear in a couple of months, but a tiny minority of us get unlucky.

Mine hit about 12 months after radiation. There was a UTI, but when we cleared it with antibiotics, the pain was still there. One time it looked like I was peeing blood

I worked with a urology oncologist: a cystoscopy confirmed that I had radiation cystitis (mild burning) to the bottom of my bladder. I had recently taken a week-long trip and probably didn't drink enough water on the road, which is what caused the UTI to flare up. The solution was

1. Drink lots of water to keep it flushed out.
2. Reduce bladder irritants like caffeine, alcohol, caffeinated drinks, and spicy foods.
3. Take Mybetriq to reduced the bladder urgency, so that I wasn't waking up every half hour at night.
4. Wear pads and briefs if/when necessary.

In about 4 months, the symptoms died down, and I was able to titrate off the Myrbetriq and throw out the pads. It's been only a minor irritation for the past 2½ years. If that hadn't worked, there are more aggressived therapies that the urologist could have offered.

Have you had a diagnosis on this problem yet?

Dr. Rossi mentions in the 2023 mid-year PCRI conference that, if having pain and burning during urination caused by radiation treatments, if they’ve ruled out a UTI and prostatitis, to try these in this order:
> Avoid fruit juice, smoothies, etc. with citric acid.
> Try NSAIDs (Ibuprofen/Alleve/Advil/Naproxin/Motrin).
> Try Prescription NSAIDS (Celebrex)
> Try Medrol dose-packs (steroids)
> Finally, try the over-the-counter product called Azo (it’s basically a urinary analgesic). (@jeffmarc referred to this as Pyridium.)

Towards the end of IMRT x 28 I began to have issues. The care team always asked about "burning". It was so consistent that I suspected a conspiracy to make me tolerate the frequency, the urgency, the weak stream etc, etc, with: "At least I don't have the burning!" And then finally I got the burning.

For the first 3 weeks after ringing the bell the urinary issues got worse. Tamsulosin (Flowmax) in week two of treatment worked for the first few days and then didn't seem to help (although the last time I forget a dose was definitely worse). Next step was daily Ibuprofen - who knows if it helps. Next they put me on a 10 day course of the steroid dexamethasone - this definitely helped me... eat everything in the refrigerator and beyond. Lastly, two weeks after treatment they gave me phenazopyridine hydrochloride which turned my pee florescent yellow and stains anything it touches. I've been sitting down to pee more and more frequently and with the cool, all-staining urine, now I only stand to pee in urinals and once or twice daily at home as an optimistic test.

My radiation treatment went so well that I felt I should be 100% 'cured' the moment I rang that bell. I'm okay with reporting that everything else improved immediately but the peeing got worse and worse. Finally, 4 weeks after, I think there is light at the end of the tunnel. I've surely figured out that drinking alcohol does not help, makes it much worse, and my nice night out yesterday led to a much worse night at home. Cutting back on drinking can't be a bad thing but I'm certainly not going to avoid it completely.

Good luck and don't despair about these issues. Things sound much worse for the RP folks. Treat it as a challenge to overcome for several weeks and hope, like I'm still hoping, that the end of the tunnel is near.

Also, I told very few people about my PC. After the bell I told a few more but most of my family and friends do not know. However I found it easier to tell people I had a urinary issue due to my PC treatment (if they know) or some vague 'medical treatment' (if they don't). Makes it easy to joke about your many trips to the bathroom. I'll say things like: "I'm going to the bathroom, see you in 20 minutes!" Don't suffer in silence and embarrassment. Good luck!

@rtmcknight, hi. I'm not sure I get the literal meaning of "Ring the bell." Can you please translate? Thanks!