Post-Radical Prostatectomy Side effects

PayneOrtho61

I am now 6 weeks post-radical prostatectomy and I am doing remarkably well. Favorable pathology report finding the cancer contained with no sign of margin involvement. Will have ultra-sensative PSA blood test in a couple of weeks to confirm.  I have lost about 15 lbs and I am only mildly incontinent. I leak when lifting things, bending down and when my bladder starts to get full. I am fully continent an night, but I now have to get up every night at about 3am to relieve my bladder ( I never had this before surgery). I am hoping this will get better because I am very active in the summer and hope to be back paddle boarding, hiking and biking. I may even try skiing in the next few weeks, as I am only using a pad a day to control the leakage. I still get depressed even from the mild leakage, because I hate being so dependent on the bathroom. I consider myself a fairly young 59 year old man, I have lived a very healthy life and I ski 15 to 20 days a year, I backpack, paddle board, and bike in the summer. I work out at the gym pre-COVID 2-3 times/wk and I am wondering how I am going to do this with incontinence even if it is mild. I don't like the idea of being stuck with even just a single pad, how do I go to the gym wearing a pad or worse, go paddle boarding? These are things the surgeon or nurse never really discussed with me. They just told me it will get better and to continue with my Kegels. I still don't see how the Kegels are helping, they just cause the urine that has been released from the bladder to be expelled through the urethra, so this leakage still occurs. I am very depressed about my ED. I have been taking the Viagra as directed, but have found little to no erectile activity. I am now 6 weeks out and find that after taking the Viagra I get some very mild enlargement, but nothing close to what I would call an erection. I also leak a fair amount when simulating myself and could not see my wife helping in this endeavor. I am discouraged but the nurse ha encourage me to keep trying. I am wondering, because my prostate was very large, close to 100cc, could that be why I am experiencing such profound ED even though both nerve bundles were spared. I am thinking that because my large prostate had to be dissected from the nerve bundles, this could have caused injury to them and it will take longer for them to recover, hence increase my recovery time for ED? I would love to hear anyone with some personal experience to weigh in on this. I know there are a lot of other things out there to try before getting discouraged, and I know I should be grateful to be in the position I am in but I was hoping for a better outcome given my diagnosis.

Georges Calvez

Early days

Hi there,

You are only six weeks post RP so you cannot expect miracles yet.
Some men do improve a lot quicker than others but six months to a year is a good time scale to get fully continent eg down to the occasional escaped drip.
I got a bit obsessive about it and I was weighing the pads twice daily on a gram scale for the last six months or so, after a year I reached the point where the pad I had taken out weighed the same as a new one for a month and I stopped pad weighing and recording.
Keep on doing the Kegels and you should continue to make small gains.
ED is another thing that you have to work at, keep on at it and you should improve, it is hard to say the extent, but it should get better with time and everything recovers from the surgery.

Best wishes,

Georges

Clevelandguy

Keep it up

Hi,

You have a lot of healing time ahead of you so don't get discouraged. Your E.D. and leakage might take 1-2 years to platue. It took me about a year and a half to reach a platue with slow and gradual improvement.   When they remove your Prostate it's major trauma and nerves take a long time to heal.   I still wear a light pad 6 years later to catch the occasional drip and my E.D. is gone. I had my surgery back in 2014.

Just keep doing your Kegals, I do about 100 per day both long holds and pulses.

 

Dave 3+4

PayneOrtho61

Clevelandguy said:

Keep it up

Hi,

You have a lot of healing time ahead of you so don't get discouraged. Your E.D. and leakage might take 1-2 years to platue. It took me about a year and a half to reach a platue with slow and gradual improvement.   When they remove your Prostate it's major trauma and nerves take a long time to heal.   I still wear a light pad 6 years later to catch the occasional drip and my E.D. is gone. I had my surgery back in 2014.

Just keep doing your Kegals, I do about 100 per day both long holds and pulses.

 

Dave 3+4

Thank you for the reassurance

Thank you for the reassurance, I know it will never be as before, but I am hoping to regain some form of control so that I can be as active as before my surgery.  I am praying for a favorable PSA result and then get on with my life, hopefully not having to think about my prostate CA every waking moment (it is hard not to when your leaking all day long).

Clevelandguy

Dribble on

I do everything I did before surgery as far as activities go.  Just stick an extra pad in the glovebox with me if I need it.  I think the best mental thing you can do is get back to normal ASAP, and the beat goes on.....................

Dave 3+4

PayneOrtho61

Clevelandguy said:

Dribble on

I do everything I did before surgery as far as activities go.  Just stick an extra pad in the glovebox with me if I need it.  I think the best mental thing you can do is get back to normal ASAP, and the beat goes on.....................

Dave 3+4

Thanks Cleaveland, I'll try

Thanks Cleaveland, I'll try to take the advice to heart!

Josephg

There Are Other Options, if Ultimately Needed

Payne,

You have received stellar advice from the great folks here regarding strategies to work toward minimizing and potentially eliminating incontinence. I recommend that you keep working as hard as you can on those strategies, and see over the coming several months how they positively impact your current condition.  For some folks, achieving continence takes up to a year, or more.

For some very small number of folks, like myself, continence never comes back, despite the strategies and dedicated efforts to bring it back.  I have 100% vertical incontinence, so I know how distressing that condition can be on the quality of life.  I just want to note to you, that in the very unlikely event that your continence does not return, there are options available to artificially restore continence. 

I've used an AMS 800 artificial sphincter implant for years, as my continence never returned, after my prostatectomy.  With my implant, I am able to do all of the activities that you mentioned, and more, and I have full quality of life in the area of continence, with my implant.

Hang in there and keep working on your continence regaining strategies, knowing that in the unlikely event that those strategies fail, you still have very viable alternative options to achieve continence.

PayneOrtho61

Josephg said:

There Are Other Options, if Ultimately Needed

Payne,

You have received stellar advice from the great folks here regarding strategies to work toward minimizing and potentially eliminating incontinence. I recommend that you keep working as hard as you can on those strategies, and see over the coming several months how they positively impact your current condition.  For some folks, achieving continence takes up to a year, or more.

For some very small number of folks, like myself, continence never comes back, despite the strategies and dedicated efforts to bring it back.  I have 100% vertical incontinence, so I know how distressing that condition can be on the quality of life.  I just want to note to you, that in the very unlikely event that your continence does not return, there are options available to artificially restore continence. 

I've used an AMS 800 artificial sphincter implant for years, as my continence never returned, after my prostatectomy.  With my implant, I am able to do all of the activities that you mentioned, and more, and I have full quality of life in the area of continence, with my implant.

Hang in there and keep working on your continence regaining strategies, knowing that in the unlikely event that those strategies fail, you still have very viable alternative options to achieve continence.

 Joseph,

 Joseph,

Thank you for your the advice, it is nice to know there are options if things don't work out as planned. Although I am more hopeful now, as I  walking for longer stretches (1 1/2 miles ) with little to no leakage.