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User
Posted 06 Apr 2023 at 01:26

Hello Anybody, l hope someone can shed some light. Had prostate taken out Jan 17 2023, no problems Doc says it’s cancer is totally gone. But I’ve got this attitude about not taking the cancer thing seriously, more concerned with incontience which is a big problem at the moment. But then i’ve got this really down problem, can’t be bothered attitude to the point that not drinking because of incontinence and pelvic floor exercises don’t seem to be working. All of this may seem confusing, that’s because I am, any ideas or thoughts? Thanks

User
Posted 06 Apr 2023 at 07:27

Peter

I’m a month ahead of you having had my RARP just before Christmas. The incontinence was my biggest fear but I persevered with the Squeezy app which I found useful for the pelvic floor exercises. Perhaps I’ve been lucky, but I’m now just about fully in control again. Like yourself, dealing with the operation has been straightforward but it’s the other effects which become the focus. It’s frustrating but the other effects do improve with time and patience. There will be others on this site with far greater knowledge than me who will also give you invaluable advice. 

User
Posted 06 Apr 2023 at 08:32

Peter, I think you will find the help on here invaluable, so keep posting and good luck with your recovery.  From the people I know from Maggies who’ve had surgery you just need to be patient and different people take different lengths of time to recover. If you’ve got a Maggies near you, why not pop in and see them. I didn’t at first because I ‘didn’t think it was for me’ …but now I look forward to our weekly Men’s Cancer Support Group(or Boys Club as I call it😊)

Derek

Edited by member 06 Apr 2023 at 08:37  | Reason: Not specified

User
Posted 06 Apr 2023 at 09:25

Hi Peter

It can be a long road to recovery with incontinence ( all men are different of course )  , I was in a similar position as you nearly 2 years ago , at this stage I was on probably 5 pads a day. My experience is, don't get too obsessed with Pelvic Floor exercises , they 'are working' but you don't see the benefits day to day. I started on 10 Pads a day for the first month or so and had absolutely ZERO control , it  was very worrying but it does get better. 

Have you been prescribed  sildenafil (Viagra) , if so take this as prescribed even if you don't want / need an erection as this helps with blood flow in the operated area.

Also try and book a meeting with an incontinence nurse to visit you. 

Hang on in there , chin up  

User
Posted 06 Apr 2023 at 12:28
Don't cut back on fluid to the extent that your risk becoming dehydrated. Also, not enough liquid and urine becomes stronger and more of an irritant.
Barry
User
Posted 18 Apr 2023 at 21:26

Hi Peter,

Sorry for the late reply - I've only just seen your post.

I had a prostatectomy 10 months ago.  As I'm sure you know, everyone's experience is different.  For that reason, I would encourage you to read lots of diffferent posts. 

I was heavily incontinent to begin with and am only now starting to see the benefits of the pelvic floor exercises.  So don't give up on the exercises.  I also started doing a lot of walking and have recently started a Pilates Exercise Class to help with pelvic floor strengthening.

I'm also taking 5mg of Tadalafil (Cialis) daily and am using a vacuum pump daily.  I haven't seen much progress with erectile functioning yet, but other people on this site who are more experienced have encouraged me to keep going.  I can sometimes get pleasure from masturbation after pumping (but not always). 

Please don't give up.  It got better for me and I'm hopeful it will for you too.

Good luck.

JedSee.

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User
Posted 06 Apr 2023 at 06:33

Hi Peter;

I'm two week behind you from surgery and been given the post PSA test result as <0.1 , consultant said he's very happy along with family seems job done from their point of view.

Like you the incontinence has done my head in and I've also held back on drinking when going out even for a walk , this past week I've had winter sickness bug as well which hasn't helped.

I'm still uncomfortable and in discomfort at times to point I'm back to consultant later today as last time he mentioned possibly start of hernia is but couldn't feel anything.

So back to the way you are feeling I fully understand where your coming from nothing can prepare you for what your dealing with but let's keep going as light at end tunnel, keep posting here at least share and get things off your chest does help.

Keep Strong friend.

Vern.

User
Posted 06 Apr 2023 at 07:21

Thanks for your reply, I to have a terrible cough this week, which has not helped at all. Hope all goes well at your visit to surgeon. It's the first time I've posted anything, I didn't think it would help, but it has. We have to try and be strong, thank you.

User
Posted 06 Apr 2023 at 07:27

Peter

I’m a month ahead of you having had my RARP just before Christmas. The incontinence was my biggest fear but I persevered with the Squeezy app which I found useful for the pelvic floor exercises. Perhaps I’ve been lucky, but I’m now just about fully in control again. Like yourself, dealing with the operation has been straightforward but it’s the other effects which become the focus. It’s frustrating but the other effects do improve with time and patience. There will be others on this site with far greater knowledge than me who will also give you invaluable advice. 

User
Posted 06 Apr 2023 at 08:32

Peter, I think you will find the help on here invaluable, so keep posting and good luck with your recovery.  From the people I know from Maggies who’ve had surgery you just need to be patient and different people take different lengths of time to recover. If you’ve got a Maggies near you, why not pop in and see them. I didn’t at first because I ‘didn’t think it was for me’ …but now I look forward to our weekly Men’s Cancer Support Group(or Boys Club as I call it😊)

Derek

Edited by member 06 Apr 2023 at 08:37  | Reason: Not specified

User
Posted 06 Apr 2023 at 09:25

Hi Peter

It can be a long road to recovery with incontinence ( all men are different of course )  , I was in a similar position as you nearly 2 years ago , at this stage I was on probably 5 pads a day. My experience is, don't get too obsessed with Pelvic Floor exercises , they 'are working' but you don't see the benefits day to day. I started on 10 Pads a day for the first month or so and had absolutely ZERO control , it  was very worrying but it does get better. 

Have you been prescribed  sildenafil (Viagra) , if so take this as prescribed even if you don't want / need an erection as this helps with blood flow in the operated area.

Also try and book a meeting with an incontinence nurse to visit you. 

Hang on in there , chin up  

User
Posted 06 Apr 2023 at 12:28
Don't cut back on fluid to the extent that your risk becoming dehydrated. Also, not enough liquid and urine becomes stronger and more of an irritant.
Barry
User
Posted 06 Apr 2023 at 13:28

I wish you both the very best Peter and Vern. 
I’m hoping to have an RP sometime soon so will be following your path, I’ll be asking you for help as I’m sure by that time you’ll be the “old boys with all the experience” and wondering why I’m making so much fuss. 😊

Hang in there and I look forward to hearing your progress πŸ‘

Take care

Greg. 

Edited by member 06 Apr 2023 at 13:29  | Reason: Typo

User
Posted 18 Apr 2023 at 21:26

Hi Peter,

Sorry for the late reply - I've only just seen your post.

I had a prostatectomy 10 months ago.  As I'm sure you know, everyone's experience is different.  For that reason, I would encourage you to read lots of diffferent posts. 

I was heavily incontinent to begin with and am only now starting to see the benefits of the pelvic floor exercises.  So don't give up on the exercises.  I also started doing a lot of walking and have recently started a Pilates Exercise Class to help with pelvic floor strengthening.

I'm also taking 5mg of Tadalafil (Cialis) daily and am using a vacuum pump daily.  I haven't seen much progress with erectile functioning yet, but other people on this site who are more experienced have encouraged me to keep going.  I can sometimes get pleasure from masturbation after pumping (but not always). 

Please don't give up.  It got better for me and I'm hopeful it will for you too.

Good luck.

JedSee.

 
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