Radiation Cystitis: How long does it take for the burning to go away?

This is not real common, but it does occur with a percentage of people.

I am not sure if you’ve tried it but it’s supposed to help

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 as AZO

Mine didn't become obvious until a year after radiation, when it was suddenly very dramatic for a while (including severe UTIs, frequent nocturia, gross hematuria, and incontinence). With the help of a urology oncologist, I got it under control in a few months.

Myrbetriq was a good starting point (I needed a higher dose before it worked, and then was able to titrate off it a few months later).

Drinking lots of water was also critical: the cystitis gets much worse and infections start if you get dehydrated, so don't let that happen.

I temporarily reduced or eliminated urinary-tract irritants like alcohol, caffeine, carbonated drinks, and spicy foods, then reintroduced them only gradually and in moderation as I healed.

I still feel a bit of burning occasionally 2½ years later, but I no longer consider the radiation cystitis to be a problem. It took a while to get it under control, and I go easy on the irritants, but I can enjoy my morning tea, a glass of wine with friends, or a nice Indian curry without serious consequences now. And best of all, I no longer have to research the location of every public washroom before I leave the house. 🙂

Best of luck!

Completing the full HBOT regimen should eventually help.

I’ve heard that, if having pain and burning during urination (dysuria) caused by radiation treatments, once they’ve ruled out a UTI and prostatitis, 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);

As always, check first with your doctor about these potential remedies.

@brianjarvis Just a note: you're not supposed to take NSAIDs with Apalutamide, and the same may apply to other -lutamides as well, so it's *very* important to check.

Because I'm on Apalutamide (Erleada) for the prostate cancer, and a low-dose blood thinner because of a history of DVT when I was paraplegic, the only off-the shelf painkiller I can take is acetaminophen (Tylenol), not ibuprofen (Advil) or acetylsalicylic acid (Aspirin).

@northoftheborder No doubt there are specific situations when certain treatments or remedies can’t be done. (Yes, sometimes life just sucks.).

But these are general recommendations that apply to the masses. Specific situations and circumstances would have to be considered on a case by case basis……..

@brianjarvis Yes, Apalutamide is keeping me alive with stage-4 prostate cancer (yay!), but it really limits my choices with other meds. Not only can I not take NSAIDs, but if I get a severe, life-threatening case of COVID, I can't take Paxlovid or Remdesivir like most people could. All I can do is keep up my vaccinations and hope my body will be able to fight it off.

I don't know if that applies to other ARSIs as well, but we definitely face some trade-offs in our cancer journeys.

I had 5 treatments on Radixact. For almost three weeks it felt like I was peeing burning hot coals, but mostly at night. For the last 3 days it seems that both the urinary and bowel symptoms are lessening. Oncologist had me on decreasing dose prednisone which was making me get up 8-10 times per night, but I think it helped a bit with the pain.. Hopefully that will lessen as well. Symptoms were definitely worse if I had to hold my urine to get to a bathroom.

@bellasdad
Many of us in this forum have been on prednisone because it is required if you’re taking Zytiga. I was on it for 2 1/2 years and never had a problem With it keeping me up at night. Cutting back on prednisone can cause really serious fatigue problems, Seemingly the opposite of what you’re having happen. When I cut back after quitting Ortega, I would really get tired in the afternoon. Sleeping too long in the day/afternoon can cause you to have serious problems sleeping at night.

I would be interested in hearing from others if they’ve had this problem.

How many milligrams are you taking now?

He gave me 2 different dose packs. The burning has eased off and my second dose pack was completed 3 days ago. Now the issue has been how many times I get up at night to pee. It has been as high as 11 times in an 8 hour period. The least number of times has been 5, and it isn't dribbling either, it is significant volume. I did read that prednisone can make you retain fluid so I guess my efforts to stay hydrated during the day was all releasing at night. Last night was better, so hopefully turning the corner. 3 weeks without much sleep is a boogar.

@bellasdad
Your efforts to stay hydrated during the day may be the biggest problem, as you are saying. Instead of drinking so much water or liquid are you drinking electrolytes? If you do, you don’t need to drink as much water in order to get liquid absorbed into your system. Electrolytes work much better to do this. I use sugar-free liquid IV, It’s a powder you put into a pint of water and it gives you more energy and distributes the water more thoroughly into your body. Using an electrolyte can greatly reduce the amount of water you have to drink and the amount of peeing you have to do at night.

At first I was making the WHO version of electrolytes, which is a liter of water Two level tablespoons of sugar and a level 1/2 teaspoon of salt. I used tapwater and can drink it down in less than five minutes. A lot of electrolytes have a lot of sugar in them. That’s why switched to the liquid IV without sugar..

I take a pill (Myrbetriq) that reduces the urge to go at night. There are a couple of different drugs that do that one of them is Myrbetriq And the other is Gemtesa. They help reduce incontinence and the constant urge to go.

Some things to talk to your doctor about.