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 twice, if not three times during the night. I'm learning to mark progress one day at a time.

 

[Bobsyeruncle]

Sounds like you are making good progress. My urologist told me that by the afternoon my sphincter muscles are tired, hence more leakage.

My PT recommended that I weigh my pads every day and record the weight of leakage (the weight of the pad after a day of use - the weight of a dry pad = the weight of the leakage). I used a small scale used normally for food/cooking. It was encouraging to see the numbers trend gradually down (with bumps up and down) until I regained nearly full continence. I would have likely stopped this practice if I had not seen improvement (too discouraging).

On the other hand, my urologist told me not to do this, as I become too fixated on my bladder and the numbers, which can exacerbate the problem. In other words, just relax, do your Kegels, and let your natural recuperation take its course.

Something to consider. Hope this helps.

 

[joe64]

Sounds like you are making good progress. My urologist told me that by the afternoon my sphincter muscles are tired, hence more leakage.

My PT recommended that I weigh my pads every day and record the weight of leakage (the weight of the pad after a day of use - the weight of a dry pad = the weight of the leakage). I used a small scale used normally for food/cooking. It was encouraging to see the numbers trend gradually down (with bumps up and down) until I regained nearly full continence. I would have likely stopped this practice if I had not seen improvement (too discouraging).

On the other hand, my urologist told me not to do this, as I become too fixated on my bladder and the numbers, which can exacerbate the problem. In other words, just relax, do your Kegels, and let your natural recuperation take its course.

Something to consider. Hope this helps.

Yes, it helps a lot. Thanks. I tend to fixate on things, and of course, I go nuts with it. I was measuring urine output and the time between needing to go. Haha. You want Excel Charts! I've backed off a bit. I only keep track of the time between bathroom trips now.

You're absolutely right, I need to relax, gently do my kegels and exercises, and let my body recover.

 

[kruznkru]

just saw ur text
I know your concerns/anxiety/frustrations !
I had RP 7/24 so I’m approaching 6 months and still leak !
It’s been the worse experience of my life ! BUT after about 4 months in and doing kegals and PT bout twice a week I’m constantly improving!
It’s 10:30am and still have not put any pads/pull up’s on since going to bed last night.
Going out I’m still uneasy.
I had a zoom call with Mayo Clinic yesterday and they said give it 3 more months.

I’ve looked at everything from AUS (artificial urinary sphinkter) to adjustable slings to regular slings in case my leakage “plateaus” and I’ll need more surgery.
I do wear an external catheter n leg bag to measure if I’m improving. I feel that’s more accurate than pads. I do that every week or 2 and seeing leakage come down gives me confidence no extra surgery will be needed.
Just “hang” in there
Happy new year !

 

[joe64]

just saw ur text
I know your concerns/anxiety/frustrations !
I had RP 7/24 so I’m approaching 6 months and still leak !
It’s been the worse experience of my life ! BUT after about 4 months in and doing kegals and PT bout twice a week I’m constantly improving!
It’s 10:30am and still have not put any pads/pull up’s on since going to bed last night.
Going out I’m still uneasy.
I had a zoom call with Mayo Clinic yesterday and they said give it 3 more months.

I’ve looked at everything from AUS (artificial urinary sphinkter) to adjustable slings to regular slings in case my leakage “plateaus” and I’ll need more surgery.
I do wear an external catheter n leg bag to measure if I’m improving. I feel that’s more accurate than pads. I do that every week or 2 and seeing leakage come down gives me confidence no extra surgery will be needed.
Just “hang” in there
Happy new year !

It's good to hear that you are still seeing progress. Today, makes a month since they (pulled) took the catheter out. It feels like months ago, but it is just four weeks. Overnight, I'm still leaking a little, but less than a once now and, likely the biggest improvement, I'm only getting up twice a night to pee, which is how I was before the surgery.

I know the feeling about going out. The wife and I have been taking trips to the store for food. I've been staying in the waiting for her return. Yesterday, I bravely went inside. The plan was I'd grab a few items from the dairy department, while she grabbed the veggies. I planned to meet her in the produce section, and we would head for the checkout that is halfway between the two locations. I was wearing a Guard pad. Well, about 100 steps into the store, I could feel that I was starting to drip, and I started to panic, so I hit the restroom. I had nothing but a few drips to deliver. I headed back out, grabbed the few items I needed, hit the checkout and called my wife, to let her know that I switched to plan B. When I got home, I checked to see how much I actually leaked, it was less than a once. I let my anxiety get the better of me. Starting today, I added a 20-minute walk around the house, either inside or outside, to build my confidence.

Thank you for sharing your experience and being so supportive. You, and others here, have been a tremendous help, keeping me positive. I will "hang" in there, you do the same. Happy New Year!