QOL gone

[rfgh20]

Prostatectomy followed 8 months later with ADT and radiation. Mostly incontinent since. Always had overactive bladder before cancer. Urologist did cystoscope and said everything looked normal. Its been > 2 weeks and I am in constant misery. Bladder hurts and have strong feeling of needing to urinate. Tried vesicare, myrbetriq, pyridium, and levsin. Perhaps wrong forum to ask, but I can't take much more. He wants to do botox injections but I'm afraid symptoms getting worse after going back in.

[Mike1971]

hi rfgh20,

Sorry you are going through this, bladder problems and pain certainly sucks

If you - like me before - also have trouble emptying the bladder completely, perhaps ask your urologist if Clean Intermittent Catheterisation (CIC) could be helpful. Being able to completely empty the bladder every now and then could maybe give some temporary relief, as well as lessen the risk of urinary tract infections.

[rfgh20 in reply to Mike1971]

Thanks so much for your input, but I empty completely and it still feels like I have to go terribly. ADT took much away and with this, I can't even exercise. Movement makes it worse.

[Tall_Allen]

My friend suffered for years with an overactive bladder. He swears by botox. It has changed his life.

[rfgh20 in reply to Tall_Allen]

My symptoms have gotten much worse since cystoscopy. Now he wants to do urodynamic study followed by the botox. I'm afraid symptoms will worsen. Do you think the radiation has made my bladder more susceptible causing pain and discomfort? Think the botox will help? My quality of life has taken a big hit. Can't exercise.

[rfgh20]

Thanks! I'll probably try it. It's been rough since the cystoscopy.

[vintage42]

Myrbetriq suppresses the bladder's urge to go, and takes a week to become effective. I tried it for a few weeks, and it worked, but I stopped because I did not need it that much and it was so expensive. Pyridium is sold as AZO, and I used that for a few days after my biopsy, and it stopped uretheral pain. You have tried so many things; I don't know what to say.

[dixiedad]

I'm taking Gemtesa. It's said to relax the bladder muscle(s?). I went from 4-5 get ups a night to 2, or 1, or none.

[MouseAddams]

Warning- if they put you on Myrbetriq or any other drug similar—make sure they take you off of it if you have to start on diuretics. They will counter each other’s purpose.

Be sure you keep your different doctors aware of what you’re taking . Ask your pharmacist also to alert you of possible complications. Question and research every time you get new medication!!!

[DrFeeelgood]

I had the same problem. Doctor put me on 800 mg Gabapentin morning and afternoon. Took care of my issue.

[jfoesq]

My only thought is: Have you been doing your Kegel exercises religiously?

[rfgh20 in reply to jfoesq]

I was when it was just incontinence. Now it's like feeling you need to urinate all day long. Intensely.

[jfoesq in reply to rfgh20]

Sorry to hear this. Hopefully- some of the others on this platform can be of help.

Good luck!

[rfgh20 in reply to jfoesq]

Thanks!!

[Nubeqa22 in reply to rfgh20]

Is it possible that you have bladder stones? This sounds like the feeling I had some years ago that was being treated as if it were a UTI, when in fact there were stones. I know this misery you are in. Hope you find help.

[rfgh20 in reply to Nubeqa22]

No, a cystoscope started my misery and he said bladder was grossly normal.

[j-o-h-n]

My incontinence is starting to piss me off.............

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/16/2023 10:29 PM EST

[rickym1]

Sorry to hear your'e in misery. Sounds worse but similar to my issues. With the prostate removed and half nerve bundle, I know I went most aggressive, but I tend to be proactive and not a risk taker at all. I am not current with new findings, but I would continue to research with reputable resources, I'm rather unique in that urologists never could deteremine what caused my symptoms (overactive bladder?) but they assured me I didn't have prostate ca. The initial targeted biopsy was neg in Port Charlotte FLA but I switched to another urologist who told me "sometimes they miss it." and they found it on the second one. I'm grateful for the surgery and all, but the symmptoms persist as they did before. (The doc's refer to the cause as the prostatectomy but I have to continual remind them of my pre-surgical symptoms that remain. So, I guess it's just overactive bladder...and I have moments where the urge to urinate is painful that I have to run to the rest room. It seems my bladder is not able to hold much fluid, weak stream, and the rest. Although I don't have incontinence. So I guess, everyone is different, but I wanted to wish you well. As always, but even moreso, today, you have to continue to be your own health advocate...as much as possible.

[rfgh20]

Thank you! Our history very similar. Myrbetriq and Vesicare together worked well but constipation was awful. Fix one thing, something else breaks.

[Shorter]

I'm going to suggest something that may sound completely off the rails and cannot be done continuously but could give you temporary relief. I had a UTI and my wife bought me something called AZO. It changed the color of my urine but gave me much needed RELIEF!

[rfgh20 in reply to Shorter]

I used it early on.