A question regarding progress towards continence

[joe64]

Hello to All,



To be honest, I almost deleted this post. After I read it, I sound like I'm just complaining.



I had my Prostate removal surgery on November 20, 2024. My surgeon did nerve sparing on the right side and because my prostate was only 39cc he was able to do Bladder neck sparing. I had the catheter out on December 3. So, it's only been a month post-surgery, and two weeks post catheter removal. My doctor and PT rep, tell me I'm doing great in every way and that my body is healing. I'm doing all the exercises, which are kegel's 4 times a day, and a daily routine from PT. Additionally, she has asked me to start retraining my bladder by learning to hold it for 2 to 4 hours.



Of course, in terms of continence, I can only take their word for it. I can sit for 2+ hours and be leak free. I can even get up and walk 50 feet to the bathroom before I start leaking.



It's so frustrating, I can't stand up and walk around without leaking like a rusty bucket. I have to hold my dick like a 3-year-old to stop the drip. They tell me that this is normal, and it will get better as I get to 3 and 6 months, which at this point seems like an eternity. I need to just be patient and stay focused on doing my exercises. I'm trying to stay positive, but I need to know that there is light at the end of the tunnel.



Here are some other details: I have a family history of PC. I'm 60 years old. My PSA was 6, and my Gleason was score was 9 (5+4). My prostate and lymph nodes were dissected, with no indications of cancer spread. It was all contained in the prostate. My first PSA first test is scheduled for mid-January.



I'm using a pull-up Depends to sleep, and it stays mostly dry, but I am getting up 3 times a night. They tell me that walking is good, but even using the Depends, I how can I walk when I'm leaking like this? Maybe I'm expecting too much. I have taken to riding a recumbent cycle in the house.



So, what's my question - At 4 weeks post-surgery, and 2 weeks post catheter, is this leaking to be expected?

Did anyone else have a catheter the size of a car vacuum line? OMG, that thing was hurting so much.

 

[Joe D]

Hello to All,



To be honest, I almost deleted this post. After I read it, I sound like I'm just complaining.



I had my Prostate removal surgery on November 20, 2024. My surgeon did nerve sparing on the right side and because my prostate was only 39cc he was able to do Bladder neck sparing. I had the catheter out on December 3. So, it's only been a month post-surgery, and two weeks post catheter removal. My doctor and PT rep, tell me I'm doing great in every way and that my body is healing. I'm doing all the exercises, which are kegel's 4 times a day, and a daily routine from PT. Additionally, she has asked me to start retraining my bladder by learning to hold it for 2 to 4 hours.



Of course, in terms of continence, I can only take their word for it. I can sit for 2+ hours and be leak free. I can even get up and walk 50 feet to the bathroom before I start leaking.



It's so frustrating, I can't stand up and walk around without leaking like a rusty bucket. I have to hold my dick like a 3-year-old to stop the drip. They tell me that this is normal, and it will get better as I get to 3 and 6 months, which at this point seems like an eternity. I need to just be patient and stay focused on doing my exercises. I'm trying to stay positive, but I need to know that there is light at the end of the tunnel.



Here are some other details: I have a family history of PC. I'm 60 years old. My PSA was 6, and my Gleason was score was 9 (5+4). My prostate and lymph nodes were dissected, with no indications of cancer spread. It was all contained in the prostate. My first PSA first test is scheduled for mid-January.



I'm using a pull-up Depends to sleep, and it stays mostly dry, but I am getting up 3 times a night. They tell me that walking is good, but even using the Depends, I how can I walk when I'm leaking like this? Maybe I'm expecting too much. I have taken to riding a recumbent cycle in the house.



So, what's my question - At 4 weeks post-surgery, and 2 weeks post catheter, is this leaking to be expected?

Did anyone else have a catheter the size of a car vacuum line? OMG, that thing was hurting so much.

Hey there. I had my RARP on Sept 25 with cath out 6 days later. So I’m approaching the magic date of 3 months post cath (yes my cath was yanked out after they filled my bladder, pretty painful for weeks after) anyway I was totally incontinent, and doing the squeez thing for about a month plus. Unless you are blessed, 4 weeks is very early. I’m 64, hardcore trainer and no other health issues. Had nerves spared with all good margins and with post op pathology indicating Gleason 3+4 with less than 5% involvement. I’ve gotten much better in terms of control, and can finally stand at the toilet and pee normally, but still leak occasionally when standing, coughing etc. it is getting better and going to a PT every 3 weeks and working the kegels as best I can. I feel like I can do this, but I’m sure it will still be awhile. I also use a penis clamp, recommended by my Dr and the PT which definitely helps, especially when working out or going places. It’s a game changer and helps retrain the bladder. Look up the Weisner clamp it’s on Amazon..

 

[joe64]

Hey there. I had my RARP on Sept 25 with cath out 6 days later. So I’m approaching the magic date of 3 months post cath (yes my cath was yanked out after they filled my bladder, pretty painful for weeks after) anyway I was totally incontinent, and doing the squeez thing for about a month plus. Unless you are blessed, 4 weeks is very early. I’m 64, hardcore trainer and no other health issues. Had nerves spared with all good margins and with post op pathology indicating Gleason 3+4 with less than 5% involvement. I’ve gotten much better in terms of control, and can finally stand at the toilet and pee normally, but still leak occasionally when standing, coughing etc. it is getting better and going to a PT every 3 weeks and working the kegels as best I can. I feel like I can do this, but I’m sure it will still be awhile. I also use a penis clamp, recommended by my Dr and the PT which definitely helps, especially when working out or going places. It’s a game changer and helps retrain the bladder. Look up the Weisner clamp it’s on Amazon..

Thank you so much for detailed reply. You have lifted my spirits. I will truly look forward to occasional leakage. I was hiking, biking and going to the gym right up until the day of surgery.

I have the penis clamp, but I've waiting to use it for when I canngo back to the gym.

Again, thank you for sharing your experience, it truly gives me hope.

 

[cyclist]

Hello to All,



To be honest, I almost deleted this post. After I read it, I sound like I'm just complaining.



I had my Prostate removal surgery on November 20, 2024. My surgeon did nerve sparing on the right side and because my prostate was only 39cc he was able to do Bladder neck sparing. I had the catheter out on December 3. So, it's only been a month post-surgery, and two weeks post catheter removal. My doctor and PT rep, tell me I'm doing great in every way and that my body is healing. I'm doing all the exercises, which are kegel's 4 times a day, and a daily routine from PT. Additionally, she has asked me to start retraining my bladder by learning to hold it for 2 to 4 hours.



Of course, in terms of continence, I can only take their word for it. I can sit for 2+ hours and be leak free. I can even get up and walk 50 feet to the bathroom before I start leaking.



It's so frustrating, I can't stand up and walk around without leaking like a rusty bucket. I have to hold my dick like a 3-year-old to stop the drip. They tell me that this is normal, and it will get better as I get to 3 and 6 months, which at this point seems like an eternity. I need to just be patient and stay focused on doing my exercises. I'm trying to stay positive, but I need to know that there is light at the end of the tunnel.



Here are some other details: I have a family history of PC. I'm 60 years old. My PSA was 6, and my Gleason was score was 9 (5+4). My prostate and lymph nodes were dissected, with no indications of cancer spread. It was all contained in the prostate. My first PSA first test is scheduled for mid-January.



I'm using a pull-up Depends to sleep, and it stays mostly dry, but I am getting up 3 times a night. They tell me that walking is good, but even using the Depends, I how can I walk when I'm leaking like this? Maybe I'm expecting too much. I have taken to riding a recumbent cycle in the house.



So, what's my question - At 4 weeks post-surgery, and 2 weeks post catheter, is this leaking to be expected?

Did anyone else have a catheter the size of a car vacuum line? OMG, that thing was hurting so much.

First, I’ve seen what it’s like when the cancer gets outside the prostate. So, in the back off mind, the leaking, at worst, is a trade off for the severe consequences of metastasized cancer. I’m more than two years out, and could not control incontinence with exercises. I still had moderate leaking. You do have to give it at least 3-6 months (beyond if you’re seeing progress). I recently had a male sling surgery, and it has helped a lot. Very minor leakage, so I still use a light pad to catch drips. My main issue is urgency and frequency. Activity and coughing, sneezing, etc. no longer cause leakage. You will likely relieve your incontinence with time and kegels; but there are other remedies available if not.

 

[joe64]

Thank you for your reply. Yes, my brother's prostate cancer metastasized. He was stage 4, and is in remission now. You are right, I need to adjust my near term expectations. Someday's I see real progress and then the next day I'm back to where I was, or at least it feels that way, but it's likely just in my head. I used to cycle, hike or go to the gym every day. It's difficult to look at four walls every day without getting a little despondent.

 

[Joe D]

Bro we all feel the same way with ups and downs, stay positive! Also use the clamp! I’m in the gym every day for a few hours thanks to the clamp. Split routines, moderate weight with very little to no leaking. I just relieve the pressure every hour if I need to and feels great. My physiotherapist and Dr. both encourage it’s usage and mention both the exercise along with a semi full bladder help the healing process. There’s no way this is stopping me from lifting, fuk that!

 

[joe64]

Bro we all feel the same way with ups and downs, stay positive! Also use the clamp! I’m in the gym every day for a few hours thanks to the clamp. Split routines, moderate weight with very little to no leaking. I just relieve the pressure every hour if I need to and feels great. My physiotherapist and Dr. both encourage it’s usage and mention both the exercise along with a semi full bladder help the healing process. There’s no way this is stopping me from lifting, fuk that!

Thank you for your reply. You're an inspiration. If I may, how long are you post surgery?

 

[Joe D]

I’ll be 3 months post surgery on Christmas Day and 3 months post cath 6 days after that. Things are beginning to settle down, dry at night and while sitting. I don’t have the detrusser pressure anymore so can walk to the bathroom and void on command. Learning to deal with this sucks but each day is one day closer to recovery!

 

[joe64]

I’ll be 3 months post surgery on Christmas Day and 3 months post cath 6 days after that. Things are beginning to settle down, dry at night and while sitting. I don’t have the detrusser pressure anymore so can walk to the bathroom and void on command. Learning to deal with this sucks but each day is one day closer to recovery!

Marvelous! Thank you for sharing this information. I have 2 months and 2 weeks, until the 3 month target of post catheter. I need to chill out, I'm doing fine.

 

[Bobsyeruncle]

It took around 3-4 months after my surgery before I regained my continence. It was a slow (and frustrating) process. At first I was leaking all the time. Then I found that my bladder control was better in the a.m. than the p.m. and that complete control occurred first after I went to bed (i.e. no need for a diaper during the night). This gradually progressed to bladder control 24-7 - I only have an occasional tiny leak and wear a thin pad if I head out in public just in case.

Although I am continent, I still have an overactive bladder - and that has taken a while (at least a year) to improve, despite bladder training, and PT. I am taking Myrbetriq (50 mg) which has helped.

 

[joe64]

Thank you for your reply and sharing your experience. It's great to hear of your progress, it keeps me positive, even when I progress on one day, and a setback the next, because it means that I will keep making progress.

I have noticed this pass week, in the morning, for at least the first few hours, my control is great, and I feel normal, like the old me. After my first set of kegels, and floor exercises, my control starts to wane, but I'm moving in the right direction. I started retraining my bladder to hold a bit longer time wise, between trips to the bathroom. To be honest, before the surgery I had to go every two and half hours during the day and I got up at least twin, if not three times during the night. I'm learning to mark progress one day at a time.