I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

POST RALP Recovery

Email this conversation Print this conversation
User
Posted 28 Jun 2024 at 20:00

After a year on Active survalance a rise in my PSA and a MRI showed the cancer had grown and wad close to breaching the Prostsewall, after various discusions had Brachy Seed Therapy ruled out by specalist opted for surgery. I had a RALP on the 12th June, catheter out 7 days later.

Am strugling with having no sensation of having a full bladder or needing to pass urine, The only signal I get is I get a dribble/leakage and then go, but never pass a large amount of urine.

Doing the exercises recommended by the continence nurse and I have been instructed to cut my fluid intake down after 21.00 ish to reduce the need to go to the toilet during the night, cut out orange squash and other citrus drinks and reduce my caffine intake. Its the loss of feeling I can't get used to.

 

 

User
Posted 29 Jun 2024 at 09:50

Hi Dave.

Thanks for joining us. Welcome to the forum.

Following prostatectomies, incontinence issues can vary enormously. You are in the very, very early days of recovery.

Things will gradually improve mate. I was told that most men have regained bladder control 6 months post op.

Best of luck mate.

 

User
Posted 29 Jun 2024 at 17:43

Hi Dave, 

A little over two and a half years ago I was in the same state as it seems you are now. Catheter out, padded up and never feeling the need to pee. The reason for that was because I was constantly dribbling into my pads (actually, I was so bad that I wore pull ups before moving to Tena level 3 pads) and consequently, my bladder did not fill to make me feel that I needed a pee. I couldn't even bend to dry my feet after a shower without squirting on the floor. And did I know I was doing it as it was happening? No! I didn't feel a thing. That's incontinence for you. I was incontinent and I thought it would never end. Everyone was telling me it was temporary, but I didn't believe them. In my case, it took a good three months before seeing a significant improvement and after six months I was using level 1 pads. Many fellow sufferers recover much quicker than that. Now, I consider myself 98% continent. I don't wear any pad at home unless I am doing heavy lifting or exercise and if I am out for the day or evening, I wear a level zero pad for confidence. I'm happy with that. Keep up the kegels and remember you have had major surgery and now rely on only one sphincter to hold back the flow instead of two. Your insides will take weeks to heal. 

You will get there and as it improves you will feel the need to pee (and also probably know when you are leaking). 

Very, very early days Dave. If you need reassurance, please do call one of the PCUK nurses. They are, quite frankly, wonderful and from my experience  with them, there is no such thing as a stupid question. 

Good luck and keep in touch. 

Peter

 

 

User
Posted 29 Jun 2024 at 20:18
Have a go at this.

Drink a decent amount of water (2 large cups) and wait for 30 minutes and get ready to get to the loo.

As soon as you feel anything, then start to pee standing up.

Once started, then try and stop the flow - this might take a few tries.

As soon as you can stop it, try and work out what muscles you are using.

Now when sitting down, try and exercise those same muscles by tensing then for 5 seconds and then relaxing for 10 seconds

Repeat this several times.

Do this 2-3 times a day (not the peeing bit but the tense/relax)

There are also some apps that you can use to try and do the same exercises (Squeezy) and if you get really stuck then you can see if perineal physiotherapy is available. That's a probe inserted into the rectum than uses electrical signals to stimulate the muscles, often used post-childbirth by women to recover bladder control.

But, it's still early days for sure

User
Posted 30 Jun 2024 at 08:03

Some 14 months ago I was experiencing the same as you. After the catheter was removed I could not as they say hold water - what went in went out straight away with no feeling.  It was very depressing and hard. After about 3/4 weeks I had almost overnight a road to Damascus moment and something clicked . I gained a semblance of control. There was improvement in stages every few weeks. When I went back to work after 7 weeks I was on 5 pads a day by Christmas I was on 1 pad a day (level 3). I am now still on 1 pad a day as I need it but once my stockpile of level 2 pads dwindles I will go onto level 1. I describe myself as a tap which needs a new washer - there’s an occasional slight leak sometimes noticeable other times not. Be patient keep squeezing and remember everyone is different. Good luck. 

Show Most Thanked Posts
User
Posted 29 Jun 2024 at 09:50

Hi Dave.

Thanks for joining us. Welcome to the forum.

Following prostatectomies, incontinence issues can vary enormously. You are in the very, very early days of recovery.

Things will gradually improve mate. I was told that most men have regained bladder control 6 months post op.

Best of luck mate.

 

User
Posted 29 Jun 2024 at 17:43

Hi Dave, 

A little over two and a half years ago I was in the same state as it seems you are now. Catheter out, padded up and never feeling the need to pee. The reason for that was because I was constantly dribbling into my pads (actually, I was so bad that I wore pull ups before moving to Tena level 3 pads) and consequently, my bladder did not fill to make me feel that I needed a pee. I couldn't even bend to dry my feet after a shower without squirting on the floor. And did I know I was doing it as it was happening? No! I didn't feel a thing. That's incontinence for you. I was incontinent and I thought it would never end. Everyone was telling me it was temporary, but I didn't believe them. In my case, it took a good three months before seeing a significant improvement and after six months I was using level 1 pads. Many fellow sufferers recover much quicker than that. Now, I consider myself 98% continent. I don't wear any pad at home unless I am doing heavy lifting or exercise and if I am out for the day or evening, I wear a level zero pad for confidence. I'm happy with that. Keep up the kegels and remember you have had major surgery and now rely on only one sphincter to hold back the flow instead of two. Your insides will take weeks to heal. 

You will get there and as it improves you will feel the need to pee (and also probably know when you are leaking). 

Very, very early days Dave. If you need reassurance, please do call one of the PCUK nurses. They are, quite frankly, wonderful and from my experience  with them, there is no such thing as a stupid question. 

Good luck and keep in touch. 

Peter

 

 

User
Posted 29 Jun 2024 at 20:18
Have a go at this.

Drink a decent amount of water (2 large cups) and wait for 30 minutes and get ready to get to the loo.

As soon as you feel anything, then start to pee standing up.

Once started, then try and stop the flow - this might take a few tries.

As soon as you can stop it, try and work out what muscles you are using.

Now when sitting down, try and exercise those same muscles by tensing then for 5 seconds and then relaxing for 10 seconds

Repeat this several times.

Do this 2-3 times a day (not the peeing bit but the tense/relax)

There are also some apps that you can use to try and do the same exercises (Squeezy) and if you get really stuck then you can see if perineal physiotherapy is available. That's a probe inserted into the rectum than uses electrical signals to stimulate the muscles, often used post-childbirth by women to recover bladder control.

But, it's still early days for sure

User
Posted 30 Jun 2024 at 08:03

Some 14 months ago I was experiencing the same as you. After the catheter was removed I could not as they say hold water - what went in went out straight away with no feeling.  It was very depressing and hard. After about 3/4 weeks I had almost overnight a road to Damascus moment and something clicked . I gained a semblance of control. There was improvement in stages every few weeks. When I went back to work after 7 weeks I was on 5 pads a day by Christmas I was on 1 pad a day (level 3). I am now still on 1 pad a day as I need it but once my stockpile of level 2 pads dwindles I will go onto level 1. I describe myself as a tap which needs a new washer - there’s an occasional slight leak sometimes noticeable other times not. Be patient keep squeezing and remember everyone is different. Good luck. 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK