Will the need to pee five or six times per night ever end?

[Miket218]

I’m nearby five years out from removal of my prostate—Gleason 9. It got to the margin in one area where I was a Gleason six. Fortunately, no mets. I had 42 follow-up radiation treatments which ended about nine months after the prostatectomy.

I suffered terrible urinary leakage for two years, soaking six or more depends daily until I had a urinary sling put in. Basically, it failed so I had an artificial spinchter installed. That helped a great deal with the leakage but I still awaken four to six times every night to pee. Naturally, I’m tired all the time and quite depressed.

My question to the group is, does the need to urinate at night ever get back to normal. Before the surgery I rarely felt the urge at night.

Thanks in advance for your wise counsel!

[Miket218]

My urinary problems began immediately after the surgery. Keagle exercises helped a bit, but not much. I even saw an incontinence expert who electronically monitored my Keagle exercises in her office to make certain I was doing them right. The radiation didn’t seem to have an impact. Probably because I was about as wrecked as one can get. My artificial spinchter had a huge impact. I’m down to two or three pads per day and I no longer wear them until I’m soaked. However, sitting in a normal position depresses the cuff and allows leakage. I also leak any time I sneeze or exert myself. I’m glad I had the AUS installed because it did make a huge difference.

I can’t understand why I’m still awakening 4-6 times per night to urinate though.

[Tall_Allen]

Do you avoid all liquids in the evening, no caffeine or fruit juices? If you have an AUS, urine isn't released until you press the button, right? So the problem is the annoying urge, I guess. It sounds like you are having bladder spasms. Talk to your Uro about Myrbetriq.

[Miket218 in reply to Tall_Allen]

I’ve tried both Oxybutinin and Myrbetriq and neither has any discernible effect. Some other meds I take give me dry mouth so avoiding evening liquids isn’t feasible for me. The fact that my A-1c is borderline diabetic doesn’t help me any either. To avoid kidney damage I try (often without success) to stay sufficiently hydrated to prevent my urine from being deep yellow. The only relief I get is if I overindulgence in whiskey. At times when I’m loaded I only awaken two or sometimes three times to pee. But the PTSD meds I take specify not to drink alcoholic beverages while using them.

I guess I’m just screwed. 😕

[Joeym1040]

I do not have the medical problems you have but have had Pca for 21 years. I do get up to pee 4-5 time a night. I happened to break my hip last year, and in rehab they give you a portable urinal. Never got up to pee, just peed in the jar and went back to sleep. Basically a large plastic jar. I use that now at home. Not having to get up out of bed lets me to get back to sleep easier. Empty it (or them when i get up in the morning.)Get them anywhere online very cheap. Good luck, hope this helps a little.

[Miket218 in reply to Joeym1040]

Glad to know you have beaten it back for 21 years! That HAS to be encouraging for many guys on this forum!

[Spyder54 in reply to Joeym1040]

Joey M,21 years is off the charts awesome. Any thoughts on what your secret was or what combination you feel was most responsible for your OS? You must have seen so many improvements in medical technology these past 21 years?

Thanks,

Mike

St Pete, FL

[Joeym1040 in reply to Spyder54]

God looking over me, luck of the draw? Diagnosed Sept 1999. 30 days of IBRT pelvic radiation in Dec 1990, Radioactive seed implants Feb 2000. For first 2 years my PSA bounced all over the place. At one point they though the treatments. Then the PSA went down to .01 and stayed there until Nov 2011 when it started up and i was diagnosed with Recurrent or Advanced Prostate cancer. I was being treated by Kr Kantoff at Dana Farber in Boston. When he looked at my record he said "they really hit this thing with a big hammer initially". He said if lucky we might get you 10 more years, The only treatments at this time was Lupron + Casodex which i started. Every year when my PSA was down to .05 or below they let me take a year off treatment. We waited unitl my PSA got to around 5 when we started Lupron + Casodex. My yearly vacation lasted about 14 to 15 months before PSA started up again. In 2018 I entered a clinical trial for the use of estradoil gel applied to the shoulder daily. The was my only treatment for a year. I worked great and the only side effect i had was i lost most of my body hair, but not my face or head! My hot flashes also went way down. That trial never published because of some problem but it worked great, The are also a few guys on this site that use it and are happy to share their experience. After the trial i waited for my PSA to go back up to 10 before i started back on Lupron + Casodex.. About a year ago my PSA stay at 6 after Lupron + Casodex so it looked like i was Castrate Resistent. Dr suggested we stop the Casodex and see what happened. My psa went down and has stayed down for the past 14 months with just Lupron, However it cant last much longer as i have already pass the average length of time this works. So soon i will be starting on one of the 3 or 4 or 5 new drugs that did not exist when i started on this journey. I have been so blessed and count my blessings every day when i see my fellow warriors having a tough time. There has been and is ongoing great progess on new and exciting treatments. Good luck, God bless, and keep up the good fight. Hope the urinal helps.

[Joeym1040 in reply to Spyder54]

I forgot to mention. Look for good Doctors, i used Medical Oncologists for all my cancer stuff. I have a urogolgist on standby. Don't be afraid to ask questions. I fired two DR's who were annoyed with my questions. Another good this is to have a real expert at one of the major centers who you can call for consults on occassion.

[Spyder54 in reply to Joeym1040]

Thank you JoeyM. “Whisper Words of Wisdom”. I hope everyone was listening. Almost 22 years since Dx!! Truly amazing especially when you consider how much has improved since then. Here is to another 20!

Slai’nte,

Mike K

[Joeym1040 in reply to Spyder54]

And i never stopped drinking beer, and as i got older wine. Gof bless.Slai’nte

Joe