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User
Posted 04 Jan 2024 at 19:32

Two months post robotic surgery, lymph nodes,nerves and semil sack removed, Mid January results revealed, I have went from being ok ,with this cancer , to angry,Incontinence is terrible and taking over my life .nights are ok 1pad all night, but as soon I as I get up in the morning flood gates, I have just started physio hopefully this helps am very angry and don’t know why,but it’s starting to affect my family life , even my poor wife ,who has been with to every appointment,every phone call and this takes me feel guilty hence the anger 


 

User
Posted 04 Jan 2024 at 22:25

Hi Gerry,


I can only speak for the many men I’ve met at Maggies who’ve had the Op, but the impression I get is you need to be patient. It’s only 2 months since your Op and there are ups and downs with it. They report that they think they are making good progress and then they have a setback. But in the end All of them have recovered continence to a level they are content with.
As for your anger, we ALL get angry at times. I think it would help you if you talked to other men in the same boat as you. Try and find a local support group and go along and talk to others, I think it would help with your anger issues, as well as giving you advice on how to help with your incontinence.


Also, Be  good to yourself and your wife, give yourself treats and do things that make you  both happy.


Good Luck!


Derek

User
Posted 04 Jan 2024 at 23:07

Hi Gerry,


I've had a prostatectomy and as a result, at times, felt very angry, frustrated and embarrassed. As you become acclimatised to how your life has changed these emotions gradually fade.


What helps me deal with the situation is focusing on how much worse my life would have been had I not had treatment.


Honestly mate, things will get better.


Adrian

User
Posted 16 Jan 2024 at 16:35
Gerry,
I am about where you are right now, nine weeks post op for me. If you look on the emotional issues area, I am angry, depressed, guilty, and all the other emotions that go along with this. Just don't take it out on yourself or others. These feelings will come and go, you will have very good days and very bad days but as the guys and some gals on this support group will tell you, things will get better. As far as the incontinence is concerned, I am just starting to recover from a nasty bout of food poisoning and the diarrhea has made me very dehydrated. Oddly, I am finding relief not peeing every few seconds. As I told a friend of mine in a pub last week, one bright side is I could be peeing as I was speaking to him and he would never know (a little humor). Setting that aside, it is amazingly frustrating to not have control. I can stop the flow mid stream, but it starts up again and I cannot then stop it. Are you doing Kagel exercises, if so, download the squeezy app,it will help keep you on track. At the moment I am going through about ten pairs of Depends (adult diapers) every day, so you are not alone.
I feel for you and can only hope things get better. We are all cheering you on.

Richard
User
Posted 04 Jan 2024 at 19:32

Two months post robotic surgery, lymph nodes,nerves and semil sack removed, Mid January results revealed, I have went from being ok ,with this cancer , to angry,Incontinence is terrible and taking over my life .nights are ok 1pad all night, but as soon I as I get up in the morning flood gates, I have just started physio hopefully this helps am very angry and don’t know why,but it’s starting to affect my family life , even my poor wife ,who has been with to every appointment,every phone call and this takes me feel guilty hence the anger 


 

User
Posted 05 Jan 2024 at 19:32

Hi Gerryb,


I'm sorry that you're having a hard time. But for most people, it does get better.  As Decho has said, you can have good days, and then have a setback.  Also, as Decho has already suggested, I would strongly recommend that you seek support from a group, if possible.  If there is no group near you, then I would suggest that you reach out to people on here as often as you need to do.  And as Adrianus has said, having the treatment is better than the alternative.  Where there's life, there's hope of improvement.


I had my prostatectomy 18 months ago.  For the first 3-6 months afterwards, my incontinence was terrible during the day - I was using about 8 pads per day.  I remember once that I cried after I had just stepped out of the shower and then immediately peed all over the bathroom floor.  It was so humiliating.  Like you, I was pretty dry when lying down at night.  My Urologist told me that the drier nights were a good sign, in that it suggested that it was a 'mechanical' problem (gravity), which should get better in time.  I was practicing the Kegel exercises 3 times per day.  The Urologist referred me to a Specialist Lower Pelvic Floor Physiotherapist.  They confirmed that I was doing the exercises correctly but that my pelvic floor muscles were very weak, so it would take time to build them up.  I then started doing Yoga and Pilates as well as the Kegel exercises.  I also try to go for a 5 mile walk most days.  I still have incontinence but now use between 2-3 pads per day, which is a lot better, but by no means perfect.  I'm still hopeful of further improvement.  I'm still learning what drinks I need to avoid (for me, it's caffeine, long drinks, carbonated drinks and most citrus fruit juices) but people vary in what triggers their bladder to empty.  Weirdly, a couple of glasses of red wine seem to settle my bladder.


I feel confident that your own incontinence will also improve with time.


 


Best wishes,


JedSee.

User
Posted 06 Jan 2024 at 16:13

Hi Gerryb, 


My op was November 2021. I am now padless at home and wear a thin pad for confidence when I go out. I have just the occasional small drip, normally when I adopt certain positions and forget to tense my PF muscle. 


But it was a slow process. What upset me most for the first months was that I didn't know when I was wetting myself. And when drying myself after a shower I stood in the tray for obvious reason!


It was only after 6 months that I started to believe I would not be hopelessly incontinent for the rest of my life. You are doing the right things and you will certainly get there. Be patient and celebrate the gradual improvements you will experience along the road to recovery.


Peter

Edited by member 06 Jan 2024 at 17:33  | Reason: Spelling error

User
Posted 06 Jan 2024 at 16:40
This *might* help but I picked up a urinal bottle from the pharmacy and keep it by the side of the bed. When getting up, I swing my legs off the bed and sit up, grab my urinal bottle and pop percy in there and stand up. Saves racing for the bathroom and I can simply pour it down the loo and rinse the bottle out.

When peeing, try and stop and start the flow to see if that helps build some muscles.

If all else fails, then see if you can get a referral to a Perineal Physiotherapist. I didn't know about them until yesterday but they help people who can't get full control and it involves a small probe inserted into the rectum that fires electrical signals similar to a TENS machine that stimulates the muscles that you need to control incontinence. You have so many sessions with them until it improves.
I'm seeing my doctor on Friday to see if we can locate one reasonably close to me to start my therapy.
Show Most Thanked Posts
User
Posted 04 Jan 2024 at 22:25

Hi Gerry,


I can only speak for the many men I’ve met at Maggies who’ve had the Op, but the impression I get is you need to be patient. It’s only 2 months since your Op and there are ups and downs with it. They report that they think they are making good progress and then they have a setback. But in the end All of them have recovered continence to a level they are content with.
As for your anger, we ALL get angry at times. I think it would help you if you talked to other men in the same boat as you. Try and find a local support group and go along and talk to others, I think it would help with your anger issues, as well as giving you advice on how to help with your incontinence.


Also, Be  good to yourself and your wife, give yourself treats and do things that make you  both happy.


Good Luck!


Derek

User
Posted 04 Jan 2024 at 23:07

Hi Gerry,


I've had a prostatectomy and as a result, at times, felt very angry, frustrated and embarrassed. As you become acclimatised to how your life has changed these emotions gradually fade.


What helps me deal with the situation is focusing on how much worse my life would have been had I not had treatment.


Honestly mate, things will get better.


Adrian

User
Posted 05 Jan 2024 at 19:32

Hi Gerryb,


I'm sorry that you're having a hard time. But for most people, it does get better.  As Decho has said, you can have good days, and then have a setback.  Also, as Decho has already suggested, I would strongly recommend that you seek support from a group, if possible.  If there is no group near you, then I would suggest that you reach out to people on here as often as you need to do.  And as Adrianus has said, having the treatment is better than the alternative.  Where there's life, there's hope of improvement.


I had my prostatectomy 18 months ago.  For the first 3-6 months afterwards, my incontinence was terrible during the day - I was using about 8 pads per day.  I remember once that I cried after I had just stepped out of the shower and then immediately peed all over the bathroom floor.  It was so humiliating.  Like you, I was pretty dry when lying down at night.  My Urologist told me that the drier nights were a good sign, in that it suggested that it was a 'mechanical' problem (gravity), which should get better in time.  I was practicing the Kegel exercises 3 times per day.  The Urologist referred me to a Specialist Lower Pelvic Floor Physiotherapist.  They confirmed that I was doing the exercises correctly but that my pelvic floor muscles were very weak, so it would take time to build them up.  I then started doing Yoga and Pilates as well as the Kegel exercises.  I also try to go for a 5 mile walk most days.  I still have incontinence but now use between 2-3 pads per day, which is a lot better, but by no means perfect.  I'm still hopeful of further improvement.  I'm still learning what drinks I need to avoid (for me, it's caffeine, long drinks, carbonated drinks and most citrus fruit juices) but people vary in what triggers their bladder to empty.  Weirdly, a couple of glasses of red wine seem to settle my bladder.


I feel confident that your own incontinence will also improve with time.


 


Best wishes,


JedSee.

User
Posted 06 Jan 2024 at 16:13

Hi Gerryb, 


My op was November 2021. I am now padless at home and wear a thin pad for confidence when I go out. I have just the occasional small drip, normally when I adopt certain positions and forget to tense my PF muscle. 


But it was a slow process. What upset me most for the first months was that I didn't know when I was wetting myself. And when drying myself after a shower I stood in the tray for obvious reason!


It was only after 6 months that I started to believe I would not be hopelessly incontinent for the rest of my life. You are doing the right things and you will certainly get there. Be patient and celebrate the gradual improvements you will experience along the road to recovery.


Peter

Edited by member 06 Jan 2024 at 17:33  | Reason: Spelling error

User
Posted 06 Jan 2024 at 16:40
This *might* help but I picked up a urinal bottle from the pharmacy and keep it by the side of the bed. When getting up, I swing my legs off the bed and sit up, grab my urinal bottle and pop percy in there and stand up. Saves racing for the bathroom and I can simply pour it down the loo and rinse the bottle out.

When peeing, try and stop and start the flow to see if that helps build some muscles.

If all else fails, then see if you can get a referral to a Perineal Physiotherapist. I didn't know about them until yesterday but they help people who can't get full control and it involves a small probe inserted into the rectum that fires electrical signals similar to a TENS machine that stimulates the muscles that you need to control incontinence. You have so many sessions with them until it improves.
I'm seeing my doctor on Friday to see if we can locate one reasonably close to me to start my therapy.
User
Posted 16 Jan 2024 at 16:35
Gerry,
I am about where you are right now, nine weeks post op for me. If you look on the emotional issues area, I am angry, depressed, guilty, and all the other emotions that go along with this. Just don't take it out on yourself or others. These feelings will come and go, you will have very good days and very bad days but as the guys and some gals on this support group will tell you, things will get better. As far as the incontinence is concerned, I am just starting to recover from a nasty bout of food poisoning and the diarrhea has made me very dehydrated. Oddly, I am finding relief not peeing every few seconds. As I told a friend of mine in a pub last week, one bright side is I could be peeing as I was speaking to him and he would never know (a little humor). Setting that aside, it is amazingly frustrating to not have control. I can stop the flow mid stream, but it starts up again and I cannot then stop it. Are you doing Kagel exercises, if so, download the squeezy app,it will help keep you on track. At the moment I am going through about ten pairs of Depends (adult diapers) every day, so you are not alone.
I feel for you and can only hope things get better. We are all cheering you on.

Richard
User
Posted 17 Jan 2024 at 10:37
However bad you are feeling, you have to remember that you have now got that cancer ridden beast out of your body. The alternative was to leave it in place, slowly growing and eventually affecting other parts of your body.
I know which I would rather have right now.
User
Posted 17 Jan 2024 at 12:31

Hi Gerryb


I understand how you feel because over 12 years ago following my prostatectomy I was totally incontinent and was losing my will to carry on but somehow with my wife by my side I managed to recover and began to live with the after effects (minor incontinence and erectile dysfunction) and enjoy our life again. You have an excellent chance of regaining your bladder control and like many of us here you will be able to re-establish your intimate life because there is a lot of help available for that. Try and find some inner strength and positivity - easier said than done. 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate


 


 

User
Posted 17 Jan 2024 at 13:27

Another alternative was the radiotherapy and hormone therapy route that many take successfuly me included I went that way to avoid the side effects of the prosectomy even though rt/ht present their own problems but not so severe in my case I would do exactly the same again I am really happy with my choice gaz 👍

 
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