Just had my radical prostatectomy

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Had my surgery October 12/21; catheter out Monday. Making slow progress each day. My experiences seem similar to those I've read here, so that's reassuring. I would be keen to know:
When did individuals stop having to get up numerous times at night to pee?
How many weeks did it take for you to only have minor leaks during the day?
Did anyone else have a burning sensation when peeing? I have had this and it seems to be slowly improving. Curious as to how common this might be and how long it may take to go away completely.

Also, Kegels...I tried doing some with the guidance from on-line resources prior to surgery and actually wondered if the numbness/tingling and general irritationthat I started to feel in the tip of my penis in the week or two prior to surgery may have been from doing the kegels incorrectly? (it may have simply been that my prostate was becoming more enlarged and/or that I was just too damn stressed?!) I think you are supposed to wait a couple of weeks after surgery before starting up again anyway, but am nervous about doing so. Will talk to my surgeon when he calls with the results of the analysis of the prostate itself, but any good tips on how to know you are doing the kegels right? Anyone else experience what I did? I've heard some people have had good success with a physical therapist? feedback on this?

Any feedback would be appreciated!

 

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Greeting JGF and welcome to our forum,

I had my radical prostatectomy on March 8, 2021. I’ll share my experience as it is similar to others on this forum. Even then bear in mind that all of us are recovering at our own rate.

Like you I leaked like a sieve for the first month using 5 or more pads a day. I did my Kegel exercises daily and I attended by sessions with my pelvic floor physical therapist at least twice a week.

I found the I couldn’t measure progress in days but could look back on the past week and see where things were slowly improving.

The first signs of recovery was not during the day but finding less and less leakage while lying prone in bed at night. It seemed that the bladder needed to be retrained on when to send the “urge” message to get up and use the toilet. The minute I’d stand up the drain opened up and leakage proceeded. The good news was things were improving at least at night.

Then slowly I started to see the bladder starting to come back on-line and start retaining some fluid. At this point in the recovery any sneeze, cough or even trying to pass some gas resulted in a leak.

For me significant leakage started to abate three months after surgery. I kept up with the Kegel exercises but cut back on the visits to the physical therapist. Bladder control continued to improve and I was down to 2 or 3 pads a day.

By month 4 I was down to a single pad unless I was really physically active and then it was more than a single pad.

This is my recovery and as many have noted, your recovery will be different but the general sequence of recovery is the same.

If you just had the catheter removed any burning sensation in the tip of your penis is most likely caused by irritation of having the catheter in place.

Not sure what would cause the burning sensation prior to surgery. Best to consult with your doctor.

As for Kegels, the online resources are good. I’d recommend you seek a physical therapist who specializes in pelvic floor muscles.

Finally, I am down to one bathroom break a night. That is a recent development seven months post surgery.

Don’t get discouraged, you are amongst friends here.

Greensleeves

 

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I had my radical prostatectomy March 25. After that is when the burning in the tip of the penis. Found out that my burning is associated with urethral strictures. They tighter my urethra got the more stinging in the tip of penis. But sadly my urethra is closing up the 4th time now. So they are inserting a surapubic catheter.

 

[Archives1]

Greeting JGF and welcome to our forum,

I had my radical prostatectomy on March 8, 2021. I’ll share my experience as it is similar to others on this forum. Even then bear in mind that all of us are recovering at our own rate.

Like you I leaked like a sieve for the first month using 5 or more pads a day. I did my Kegel exercises daily and I attended by sessions with my pelvic floor physical therapist at least twice a week.

I found the I couldn’t measure progress in days but could look back on the past week and see where things were slowly improving.

The first signs of recovery was not during the day but finding less and less leakage while lying prone in bed at night. It seemed that the bladder needed to be retrained on when to send the “urge” message to get up and use the toilet. The minute I’d stand up the drain opened up and leakage proceeded. The good news was things were improving at least at night.

Then slowly I started to see the bladder starting to come back on-line and start retaining some fluid. At this point in the recovery any sneeze, cough or even trying to pass some gas resulted in a leak.

For me significant leakage started to abate three months after surgery. I kept up with the Kegel exercises but cut back on the visits to the physical therapist. Bladder control continued to improve and I was down to 2 or 3 pads a day.

By month 4 I was down to a single pad unless I was really physically active and then it was more than a single pad.

This is my recovery and as many have noted, your recovery will be different but the general sequence of recovery is the same.

If you just had the catheter removed any burning sensation in the tip of your penis is most likely caused by irritation of having the catheter in place.

Not sure what would cause the burning sensation prior to surgery. Best to consult with your doctor.

As for Kegels, the online resources are good. I’d recommend you seek a physical therapist who specializes in pelvic floor muscles.

Finally, I am down to one bathroom break a night. That is a recent development seven months post surgery.

Don’t get discouraged, you are amongst friends here.

Greensleeves

 

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Thanks very much for your prompt feedback, including your experiences and good perspectives. I really appreciate it. Best wishes. JGF

 

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I had my radical prostatectomy March 25. After that is when the burning in the tip of the penis. Found out that my burning is associated with urethral strictures. They tighter my urethra got the more stinging in the tip of penis. But sadly my urethra is closing up the 4th time now. So they are inserting a surapubic catheter.

 

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Thanks for getting back to me. That doesn't sound like fun. It is quite the process, isn't it? All the best to you - I hope this is the solution for you! JGF

 

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I concur with Greensleeves. Although my surgery was also in March of this year, my recovery has been less dramatic. But I attribute that to the state I was in prior to surgery. I had been having retention issues for years until in January of this year, I found myself in the ER with the complete inability to void even a drop of urine. I was catheterized immediately, which led to a trip to the urologist, extensive testing and the ultimate diagnosis of prostate cancer. The day I arrived for surgery, I was still wearing a foley catheter strapped to my leg.

Which is all to illustrate that, for me, my pelvic floor muscles had been laying fallow for years, since my enlarged prostate was doing all the work of preventing me from voiding my bladder. So 6 months out from surgery, I'm still seeing a PT and doing daily kegal exercises. The only way I have of measuring my progress is by weighing the liner pads on a kitchen scale in mililiters. I then report the totals to my PT and surgeon (who I still every 3 months). My output totals are all over the map from a high of 230 mil to a low of 30 ml per day, largely dependent on my degree of physical activity. My surgeon would like to get that down to less than 10 daily.

He also wants to discuss surgical options, but then that's what surgeons do. To a carpenter, everything looks like a nail. I believe that if I stick to the exercise regimen, with patience and perseverence I cannot help but improve over time. I would like to add that one advantage to seeing a PT in person is the physical examination to determine whether or not you are performing the exercises correctly.

Hang in there. We are all in this together.

 

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@JGF Welcome. I am 10 weeks post surgery now. I also had the burning sensation post surgery, my urologist got a urine test done to check for infection but that was clear and the burning sensation cleared up by itself over a few weeks.

I agree with @Greensleeves351. My best resource to date has been the specialist pelvic floor physiotherapist I am seeing. At our first session she did a really good job of explaining to me what we needed to deal with and why pelvic floor exercises are helpful, in addition to working through the initial exercises with me. At our 2nd session she got me to attend with a full bladder and she put an ultrasound machine over my bladder and checked herself and showed me on the screen that I was doing the exercises correctly on the correct muscles. I could see the fluid level in the bladder rising and falling as I clenched and unclenched, which gave me a lot of confidence to continue with the exercises religiously. And she has been great to ask questions of and bounce things off, as she has a lot of experience with guys going through exactly what I am going through.

At 10 weeks I am now at the point where the remaining internal urethral sphincter muscle traumatised during surgery should be starting to slowly recover and kick back in to help with bladder control. And she has increased the number and clench time of my exercises and introduced some new ones as well. I am pretty good now at staying mostly dry at night while getting up twice a night most nights to empty a full bladder, which is back to my presurgery routine ~ and also while sitting or lying during the day, but taking the dog for a daily walk and doing tasks around the house and yard are still challenging and usually wet experiences requiring pads.

I have been concentrating for some weeks now on "tightening the tap" as my physio called it, meaning focusing on not running off to the toilet every time I get an "urge" to pee ~ apparently the bladder needs to be retrained to allow itself to fill before triggering an urge to empty ~ and I can hold my urges pretty well now while sitting/lying until my bladder is quite full.

I am only a few weeks ahead of you in my recovery, so don't hesitate to ask any questions you may have, and please let us know how you are doing so we can compare notes and help keep each other motivated.

Cheers, Doug

 

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Thank you for your post. I had my robotic prostatectomy on October 4 of this year and have had an almost identical experience. I knew that incontinence would probably be an issue, but I had envisioned it being an occasional spurt when I coughed, not the continual dripping. And I didn't expect to be getting up every hour at night. Have also had the burning sensation in my penis. It's helpful to know that others are having the same set of experiences.

I have begun to see some progress. My bladder is now retaining small amounts of fluid when I am sitting and I can make it to the bathroom with a small amount still in my bladder. But I do feel like I have to get to the bathroom every 20-30 minutes. I know I need to work on that. I was able to go to a social event yesterday and sit for over an hour with no problem. That felt like progress.

I have been doing Kegels regularly and was increasing the frequency and duration, but I think that I may have overdone it a bit. I recently read that doing to many of them and/or doing them too long can tire the pelvic floor muscles and actually make things worse. So I gave myself the last couple of days off and am resuming today on a modified schedule.

I have not yet seen a physical therapist. I'm waiting until my six week PSA check to see how things are going and will talk with my doctor about it then. I sometimes need to remind myself that a PSA of 0 on that checkup is a more important objective than a quick recover of continence.

Thank you again for your post. I'll look forward to following the progress that you and others report and will try to share mine as well.

 

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My op was 10/6/21. Still 3-5 depends a day, burning is just irritating instead of painful. Might be overdoing the kegals as today’s not going as well as yesterday. Drip drip drip. My margins and lymph nodes were clear so when I finally recover I hope to be around a while. I’m happily married and 54 so I need woody back too lol. I’ll be keeping up with you other guys, good luck to everyone.

 

[Archives1]

I concur with Greensleeves. Although my surgery was also in March of this year, my recovery has been less dramatic. But I attribute that to the state I was in prior to surgery. I had been having retention issues for years until in January of this year, I found myself in the ER with the complete inability to void even a drop of urine. I was catheterized immediately, which led to a trip to the urologist, extensive testing and the ultimate diagnosis of prostate cancer. The day I arrived for surgery, I was still wearing a foley catheter strapped to my leg.

Which is all to illustrate that, for me, my pelvic floor muscles had been laying fallow for years, since my enlarged prostate was doing all the work of preventing me from voiding my bladder. So 6 months out from surgery, I'm still seeing a PT and doing daily kegal exercises. The only way I have of measuring my progress is by weighing the liner pads on a kitchen scale in mililiters. I then report the totals to my PT and surgeon (who I still every 3 months). My output totals are all over the map from a high of 230 mil to a low of 30 ml per day, largely dependent on my degree of physical activity. My surgeon would like to get that down to less than 10 daily.

He also wants to discuss surgical options, but then that's what surgeons do. To a carpenter, everything looks like a nail. I believe that if I stick to the exercise regimen, with patience and perseverence I cannot help but improve over time. I would like to add that one advantage to seeing a PT in person is the physical examination to determine whether or not you are performing the exercises correctly.

Hang in there. We are all in this together.

 

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Thanks for your response. It sounds like you were in rough shape for sure! Good luck as you go forward. I did read a response or two in the men category about successful sling surgeries, so that may be encouraging if it comes to that for you. Take care and thanks again for connecting. JGF

 

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@JGF Welcome. I am 10 weeks post surgery now. I also had the burning sensation post surgery, my urologist got a urine test done to check for infection but that was clear and the burning sensation cleared up by itself over a few weeks.

I agree with @Greensleeves351. My best resource to date has been the specialist pelvic floor physiotherapist I am seeing. At our first session she did a really good job of explaining to me what we needed to deal with and why pelvic floor exercises are helpful, in addition to working through the initial exercises with me. At our 2nd session she got me to attend with a full bladder and she put an ultrasound machine over my bladder and checked herself and showed me on the screen that I was doing the exercises correctly on the correct muscles. I could see the fluid level in the bladder rising and falling as I clenched and unclenched, which gave me a lot of confidence to continue with the exercises religiously. And she has been great to ask questions of and bounce things off, as she has a lot of experience with guys going through exactly what I am going through.

At 10 weeks I am now at the point where the remaining internal urethral sphincter muscle traumatised during surgery should be starting to slowly recover and kick back in to help with bladder control. And she has increased the number and clench time of my exercises and introduced some new ones as well. I am pretty good now at staying mostly dry at night while getting up twice a night most nights to empty a full bladder, which is back to my presurgery routine ~ and also while sitting or lying during the day, but taking the dog for a daily walk and doing tasks around the house and yard are still challenging and usually wet experiences requiring pads.

I have been concentrating for some weeks now on "tightening the tap" as my physio called it, meaning focusing on not running off to the toilet every time I get an "urge" to pee ~ apparently the bladder needs to be retrained to allow itself to fill before triggering an urge to empty ~ and I can hold my urges pretty well now while sitting/lying until my bladder is quite full.

I am only a few weeks ahead of you in my recovery, so don't hesitate to ask any questions you may have, and please let us know how you are doing so we can compare notes and help keep each other motivated.

Cheers, Doug

 

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Thanks for your response. It sounds like you are doing well. And it sounds like a visit to a physical therapist will be helpful in the coming week or two. While there is a lot to this whole recovery process, I suppose taking it day by day and seeing where each of us needs to go next as an individual is key. Am trying to chill out a bit for now. Thanks again and good luck with continued good progress. JGF

 

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Thank you for your post. I had my robotic prostatectomy on October 4 of this year and have had an almost identical experience. I knew that incontinence would probably be an issue, but I had envisioned it being an occasional spurt when I coughed, not the continual dripping. And I didn't expect to be getting up every hour at night. Have also had the burning sensation in my penis. It's helpful to know that others are having the same set of experiences.

I have begun to see some progress. My bladder is now retaining small amounts of fluid when I am sitting and I can make it to the bathroom with a small amount still in my bladder. But I do feel like I have to get to the bathroom every 20-30 minutes. I know I need to work on that. I was able to go to a social event yesterday and sit for over an hour with no problem. That felt like progress.

I have been doing Kegels regularly and was increasing the frequency and duration, but I think that I may have overdone it a bit. I recently read that doing to many of them and/or doing them too long can tire the pelvic floor muscles and actually make things worse. So I gave myself the last couple of days off and am resuming today on a modified schedule.

I have not yet seen a physical therapist. I'm waiting until my six week PSA check to see how things are going and will talk with my doctor about it then. I sometimes need to remind myself that a PSA of 0 on that checkup is a more important objective than a quick recover of continence.

Thank you again for your post. I'll look forward to following the progress that you and others report and will try to share mine as well.

 

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Thanks for your response. Am relieved to see that a couple of guys have had the same burning sensation and that it went away over time. It is funny how each day is different that another...I guess all dependent on how active we are and how much we drink, etc. Good luck as the journey continues. JGF

 

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My op was 10/6/21. Still 3-5 depends a day, burning is just irritating instead of painful. Might be overdoing the kegals as today’s not going as well as yesterday. Drip drip drip. My margins and lymph nodes were clear so when I finally recover I hope to be around a while. I’m happily married and 54 so I need woody back too lol. I’ll be keeping up with you other guys, good luck to everyone.

 

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Hi again. Sorry to hear the burning sensation is still an issue but glad it is less painful. I am turning 61 in a week and like you the cancer was contained to the prostate...being cancer free and having better urinary control are the #1 and #2 priorities for me and my wife for sure...as my surgeon said, we pee all day every day so that is a critical piece of success. Will try and be patient. As for priority #3 - erectile function - I'm hopeful, but that seems a long way off given how hard it is just learning to urinate successfully!! Good wishes to all, JGF

 

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Hi, Had prostate removed 10/6. Still struggling with leaking primarily with walking. Doing Keagels seeing minor improvements. My main concern right now is still having Penis, scotal, and perineum pain. Any suggestions?