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User
Posted 09 Jul 2021 at 19:26

Hi

I had a prostatectomy 3 weeks ago and my catheter was removed a week ago, since then I have had absolutely no control over my bladder, I'm getting through easy12 pull up nappies a day. When I get up after sitting down (even for a short time) it all just gushes out.

I can't leave my house at the moment as I have no confidence that the nappies will hold it all when it comes out.

Does this get progressively better?

How can I improve the situation and get confidence to leave my house.

Why can't I get these nappies on prescription? It's costing me a fortune.

I'm doing the Pelvic floor exercises as instructed by my nurse BTW

User
Posted 27 Jul 2021 at 23:16

Have to say I'm a tad sceptical of the official figures for urinary continence (UI) following a RP. All but one of the six men I know who've had a RP have complained of lasting UI since their RP. I seem to recall that you are not classed as suffering UI if after twelve months you are using less than two pads per day. One friend of mine who had a RP about a decade ago never stops complaining at having to use a pad whenever he goes out. He tells me his average leakage is around 5ml/day but can go up to about 50ml on occasion.

Another ia happy now but only because after suffering heavy UI for years post RP he was fitted with the sling and has now been dry for three/four years since. Yet another friend who is sadly no longer with us could never come to terms with his UI problem. There are others who I know of that continue to suffer, and like I said, just the one who was dry relatively quickly.

For myself I had a RARP and RT a dozen years ago and have neve stopped leaking since. I have changed my lifestyle in order to do everything I can to reduce it, eg eliminating all known dietary triggers (alcohol, fizzy drinks, tea, coffee, dairy products, tomatoes, etc), keeping fit, keeping my weight comfortably within recommended gudelines, doing pelvic floor exercises assiduously etc. I have tried several drugs, eg Oxybutynin, Tolteradine, Mirabegron, each of which produced improvements for a while but had to be discontinued because of serious side effects such as heart problems, sleeplessness, etc.

As for medical interventions such as the sling and sacral nerve stimulation, I was advised because of the effects of radiation these were probably too risky. On top of which a bad experience two years ago invovling a rigid cystoscopy to remove what turned out to be a phantom tumour in my bladder that immediately resulted in a tenfold worsening of my UI (up from around 20ml/day prior to the procedure to 200ml/day ever since) has left me resolved never to have any further interventions unless they are totally unavoidable.

Now, having said all that, I wouldn't want anyone to think I lead a miserable existence. Quite the contrary, I have never been happier! I enjoy my current lifestyle immensely and have learnt to live with all the inconveniences of UI. They are as nothing compared with what many have to put up with.

As we PCa sufferers all agree, life is to be enjoyed to the full, every single minute of every single day, and that is what I mean to keep doing no matter what life throws at me.

Whahey!!!

Edited by member 27 Jul 2021 at 23:24  | Reason: Not specified

User
Posted 09 Jul 2021 at 19:26

Hi

I had a prostatectomy 3 weeks ago and my catheter was removed a week ago, since then I have had absolutely no control over my bladder, I'm getting through easy12 pull up nappies a day. When I get up after sitting down (even for a short time) it all just gushes out.

I can't leave my house at the moment as I have no confidence that the nappies will hold it all when it comes out.

Does this get progressively better?

How can I improve the situation and get confidence to leave my house.

Why can't I get these nappies on prescription? It's costing me a fortune.

I'm doing the Pelvic floor exercises as instructed by my nurse BTW

User
Posted 09 Jul 2021 at 21:18

Trev 

I was almost dry a few days after catheter removal, but further treatments meant I had to regain my continence numerous times. After one treatment I would drop 150ml in one go.  I would put a pad in my snug underwear, stand in the shower and see what happened, it gave me the confidence to get out and about. 

Google "continence service your town". You may find that you can self refer without the need to see your doctor. It is a bit of a post Cade lottery where gets free pads. You could try your urology nurse if you have one.

If you can get referred they usually want a 3 day water works diary,there are plenty on the internet. Keep a record of fluid intake and urine output. If you weigh a wet pad and subtract the weight of a dry pad you can work out the rough volume of urine. E.g 150g equals 150mls. 

Can you stop your flow of urine, don't do it too often the urology staff don't recommend it ? Stopping the flow shows you are using the right muscles and the mechanics are working. Bits of scab and debris could be keeping your remaining sphincter open, you have been bashed about.

Others members often mention looking out for offers on pads. I have always been supplied with Tena pads and found them okay.

It is early days but it does sound pretty severe.

Thanks Chris

 

 

User
Posted 10 Jul 2021 at 08:32

Ask for a referral to a pelvic health physiotherapist. They will check you are doing pelvic floor exercise correctly, customise them specifically for your case, and can do some measuring of sphincter function. It may take a long time for the referral to come through, so ask now, and you can always cancel it if no longer needed.

They're not expensive to attend privately, and getting to see one sooner could be beneficial for recovery

User
Posted 10 Jul 2021 at 11:03
Hi Trev

Have a read of this page and speak to your doctor or consultant about potential treatments.

https://prostatecanceruk.org/prostate-information/living-with-prostate-cancer/urinary-problems

User
Posted 10 Jul 2021 at 11:48
Gosh, 3 weeks is a bit early to be worrying. Your brain is having to relearn bladder control because you have had one sphincter removed and the other may have been repositioned - it can take a while for the brain to work that out. It is a bit like when a toddler is being potty trained; at first they have no idea that this sensation is urine dribbling out but then over time, they learn a) what that feeling is b) how to stop it if they concentrate hard enough and then c) how to stop it subconsciously. Pelvic floor exercises won't make a lot of difference at the moment but it is good to be doing them regularly as it will help in the medium to long term - as Andy says, you could ask for a referral to a pelvic health specialist (or at least ask if one exists in your area) or you could just ask to see the physiotherapist linked to your GP practice to make sure that you are doing them correctly.

Re pads - it varies so much around the country but where I live, you don't get free pads until you have been incontinent for 6 months - and then they are provided by the district nursing team. CCGs / NHS trusts have different rules 🤷‍♀️

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jul 2021 at 11:59

Hopefully should settle as very much early days. The prof told me that it’s likely the urinary sphincter it held slightly open under tension from the stitches. They soften after ~5 weeks. At which point there should be noticeable improvement. With me it was almost like clockwork as at 5weeks I became totally dry. Albeit the odd leak from a cough, sneeze or barrel of beer.

Additionally the scar tissue softens and heals over the following ~12 months so things should further improve.

Lyn’s point ref brain remapping is very much on point. The changes take time to be relearnt and your neural pathways need to adapt to the new configuration.

Edited by member 10 Jul 2021 at 12:01  | Reason: Not specified

User
Posted 11 Jul 2021 at 18:16

Re NHS & pads. Just call the Specialist Nurses at your Hospital

User
Posted 23 Jul 2021 at 18:03

Hi Trev

In the same boat here today.  Just come home after catheter out like Niagra falls.  Have things improved since your last post?

 

Regards John

User
Posted 26 Jul 2021 at 18:37

Hi Trev

Thanks for the reply.  Sorry to hear you are six weeks on after catheter removal.  At the moment for me I am only four days after removal.  I can't walk any distance without it pulsing out as I would call it, so at the present moment in time I am lying low relaxing in the chair apart from if I get the urge to go and have a wee.  I have been doing my pelvic floor exercises four times a day.  I am using an app called squeezy men which cost £2.99 to download it on to my phone and it just makes two different noises to start and stop and then a final section to do ten quick ones.  I have been told it could take up to three weeks or so.  I can't honestly say how I am doing.  I think it is a case of watch this space and allow some of the healing process to kick in.  Yesterday I did watch on youtube a lady called Kim Toker explaining more in detail about how to help yourself which I found quite interesting.  If I can help obviously I will do and keep you informed.

Regards John

User
Posted 26 Jul 2021 at 19:22

"my experience so far seems worse that the average man (I've got from speaking to people)"

This is not right Trev - I would say you are more or less where the vast majority of men are 6 weeks post op. There are a few that find they are dry the minute the catheter is removed but for most, it starts to improve between the 6 and 12 week stage. Statistically, if you are on one pad per day or less by 6 month mark, you are in the lucky 50%!

Edited by member 26 Jul 2021 at 23:44  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jul 2021 at 23:18

Probably not something to become reliant on over the long term because you want to obtain control. However, for some times when relying on the pads is problematical, you could consider a system which directs urine from your penis via a tube to a bag attached to your leg. 'Conveen' do such a system which I used when towards the end of my RT I experienced urgency and frequency. https://www.youtube.com/watch?v=3w-SsLPkmhw

My GP arranged a supply for me but this was in 2008, so may not be the case now.

Actually, I had a larger reusable bag with an even larger night bag but a number of variations were available and possibly still are.

Edited by member 26 Jul 2021 at 23:40  | Reason: to highlight link

Barry
User
Posted 27 Jul 2021 at 11:49

Originally Posted by: Online Community Member

Hi LynEyre

When you say ".. and for some men Incontinence is permanent" What does that mean going forward, are there treatments for it?  That statement scared me a little I must admit!

regards

Trev

Trev,

Stop worrying about things, until you get there. Yes at the moment you have serious incontinence problems, but nothing unusual, hopefully your brain will start to work out what signals it has to send to stop you peeing yourself. Give yourself time to recover from this operation. 

Edited by member 27 Jul 2021 at 12:54  | Reason: Not specified

Dave

User
Posted 27 Jul 2021 at 12:46

Originally Posted by: Online Community Member

Hi LynEyre

When you say ".. and for some men Incontinence is permanent" What does that mean going forward, are there treatments for it?  That statement scared me a little I must admit!

regards

Trev

According to NHS data, about 10% of men are left with permanent incontinence, that should have been explained to you before you agreed to the op ... it is probably in your paperwork somewhere and there is information in the PCUK toolkit. Of the 10% with permanent incontinence, some dribble and wearing a continence pad is enough. If they are left with serious incontinence, there are sheaths like the Conveen that Barry mentioned or, in rare cases, the NHS may agree to an operation to fit an artificial sphincter. 

It is the luck of the draw. Any idea that men left with permanent incontinence just didn't do the pelvic floor exercises properly is a myth. The best surgeon in the world can't guarantee continence. Non-nerve sparing increases the risk of incontinence. But in context, 90% of men are using one pad per day or less at 12 months and some will only leak if they have been drinking beer -  they perhaps get used to always wearing dark trousers just in case. 

Edited by member 27 Jul 2021 at 12:52  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jul 2021 at 01:25

Just to post something a little more hopeful...

I had my partial nerve sparing RARP 16 months ago at the age of 68.

I've had some issues since that point with incontinence - the most general problem is having an urge to pee, even though my bladder isn't full. I have some control over that urge, but sometimes it gets too much and I have to dash to the loo. I've had two small accidents at night, which I can only explain by dreaming I was having a pee. I've had about half a dozen dashing to the loo after a walk and getting a severe urge as my key went in the door. I also had a small dribble roughly every other day.

Nurse put me on some Toltorodine but they didn't do much and the surgeon suggested I try some diet changes instead, I now have one decaf tea for breakfast and the rest of the time I drink herbal tea with no citrus (I used to drink Lemon teas a lot, but no more). This has actually seemed to help, but also it has got better over time. I find that drinking wine is no problem, but beer guarantees numerous visits unless it's a very hot day. No more dribbles and no more accidents for the last couple of months, so definite progress.

As I used to get urges due to increased prostrate size, I have been used to coping with the need to pee, and I've continued my coping patterns - don't drink too much liquid before going out, have a pee before I go and be aware of public loo locations. There are also a few well-watered bushes on my country walks.

You're obviously worse than I ever was, but there is hope things will improve and I would try whatever suggestions your medical team offer.

User
Posted 28 Jul 2021 at 08:06
With hindsight I have been very lucky - no incontinence anymore, a usable willy and very happy with my "lot".

At the time of my diagnosis I just went into "get it out mode" you listen to the informed consent speech but it doesn't sink in what the potential impact might be.

Vital that all PCA patients do their own research and come to their own decision in parallel with their medical team.

Would I have done the same things? Probably but that would have been an informed decision where I understood the likely outcome not a panic response where every set back was a suprise: Peritonitis, sepsis, incontinence, marriage breakdown, impotence, PSA anxiety, possibility of more treatment...

Show Most Thanked Posts
User
Posted 09 Jul 2021 at 21:18

Trev 

I was almost dry a few days after catheter removal, but further treatments meant I had to regain my continence numerous times. After one treatment I would drop 150ml in one go.  I would put a pad in my snug underwear, stand in the shower and see what happened, it gave me the confidence to get out and about. 

Google "continence service your town". You may find that you can self refer without the need to see your doctor. It is a bit of a post Cade lottery where gets free pads. You could try your urology nurse if you have one.

If you can get referred they usually want a 3 day water works diary,there are plenty on the internet. Keep a record of fluid intake and urine output. If you weigh a wet pad and subtract the weight of a dry pad you can work out the rough volume of urine. E.g 150g equals 150mls. 

Can you stop your flow of urine, don't do it too often the urology staff don't recommend it ? Stopping the flow shows you are using the right muscles and the mechanics are working. Bits of scab and debris could be keeping your remaining sphincter open, you have been bashed about.

Others members often mention looking out for offers on pads. I have always been supplied with Tena pads and found them okay.

It is early days but it does sound pretty severe.

Thanks Chris

 

 

User
Posted 10 Jul 2021 at 08:32

Ask for a referral to a pelvic health physiotherapist. They will check you are doing pelvic floor exercise correctly, customise them specifically for your case, and can do some measuring of sphincter function. It may take a long time for the referral to come through, so ask now, and you can always cancel it if no longer needed.

They're not expensive to attend privately, and getting to see one sooner could be beneficial for recovery

User
Posted 10 Jul 2021 at 11:03
Hi Trev

Have a read of this page and speak to your doctor or consultant about potential treatments.

https://prostatecanceruk.org/prostate-information/living-with-prostate-cancer/urinary-problems

User
Posted 10 Jul 2021 at 11:48
Gosh, 3 weeks is a bit early to be worrying. Your brain is having to relearn bladder control because you have had one sphincter removed and the other may have been repositioned - it can take a while for the brain to work that out. It is a bit like when a toddler is being potty trained; at first they have no idea that this sensation is urine dribbling out but then over time, they learn a) what that feeling is b) how to stop it if they concentrate hard enough and then c) how to stop it subconsciously. Pelvic floor exercises won't make a lot of difference at the moment but it is good to be doing them regularly as it will help in the medium to long term - as Andy says, you could ask for a referral to a pelvic health specialist (or at least ask if one exists in your area) or you could just ask to see the physiotherapist linked to your GP practice to make sure that you are doing them correctly.

Re pads - it varies so much around the country but where I live, you don't get free pads until you have been incontinent for 6 months - and then they are provided by the district nursing team. CCGs / NHS trusts have different rules 🤷‍♀️

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Jul 2021 at 11:59

Hopefully should settle as very much early days. The prof told me that it’s likely the urinary sphincter it held slightly open under tension from the stitches. They soften after ~5 weeks. At which point there should be noticeable improvement. With me it was almost like clockwork as at 5weeks I became totally dry. Albeit the odd leak from a cough, sneeze or barrel of beer.

Additionally the scar tissue softens and heals over the following ~12 months so things should further improve.

Lyn’s point ref brain remapping is very much on point. The changes take time to be relearnt and your neural pathways need to adapt to the new configuration.

Edited by member 10 Jul 2021 at 12:01  | Reason: Not specified

User
Posted 11 Jul 2021 at 18:16

Re NHS & pads. Just call the Specialist Nurses at your Hospital

User
Posted 23 Jul 2021 at 18:03

Hi Trev

In the same boat here today.  Just come home after catheter out like Niagra falls.  Have things improved since your last post?

 

Regards John

User
Posted 26 Jul 2021 at 18:21

Hi John (Prince71)

Sorry to hear that and unfortunately, no, my situation hasn't yet improved (6 weeks since the Operation). 100% of my wee is going into my pads (unless I hold my penis on-route to the toilet, which I do at home if I can).

All men are different of course, so this doesn't mean the same will happen to you, as my experience so far seems worse that the average man (I've got from speaking to people) but I would be interested to know if things do improve for you and what the progress is ( can you get to the toilet before it all comes out, or, will it suddenly stop gushing? ) anything really, I would really appreciate to know if can keep in touch?

 

regards

 

Trev

 

 

User
Posted 26 Jul 2021 at 18:37

Hi Trev

Thanks for the reply.  Sorry to hear you are six weeks on after catheter removal.  At the moment for me I am only four days after removal.  I can't walk any distance without it pulsing out as I would call it, so at the present moment in time I am lying low relaxing in the chair apart from if I get the urge to go and have a wee.  I have been doing my pelvic floor exercises four times a day.  I am using an app called squeezy men which cost £2.99 to download it on to my phone and it just makes two different noises to start and stop and then a final section to do ten quick ones.  I have been told it could take up to three weeks or so.  I can't honestly say how I am doing.  I think it is a case of watch this space and allow some of the healing process to kick in.  Yesterday I did watch on youtube a lady called Kim Toker explaining more in detail about how to help yourself which I found quite interesting.  If I can help obviously I will do and keep you informed.

Regards John

User
Posted 26 Jul 2021 at 19:22

"my experience so far seems worse that the average man (I've got from speaking to people)"

This is not right Trev - I would say you are more or less where the vast majority of men are 6 weeks post op. There are a few that find they are dry the minute the catheter is removed but for most, it starts to improve between the 6 and 12 week stage. Statistically, if you are on one pad per day or less by 6 month mark, you are in the lucky 50%!

Edited by member 26 Jul 2021 at 23:44  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jul 2021 at 19:27

I have been told it could take up to three weeks or so.

Sorry Prince, whoever told you it takes 3 weeks was either a joker or a salesman. It can sort itself out quickly but for most men it takes 3 to 12 months and for some men, incontinence is permanent. Don't put yourself under excessive pressure to achieve some ideal.

Edited by member 26 Jul 2021 at 23:43  | Reason: typo

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Jul 2021 at 23:18

Probably not something to become reliant on over the long term because you want to obtain control. However, for some times when relying on the pads is problematical, you could consider a system which directs urine from your penis via a tube to a bag attached to your leg. 'Conveen' do such a system which I used when towards the end of my RT I experienced urgency and frequency. https://www.youtube.com/watch?v=3w-SsLPkmhw

My GP arranged a supply for me but this was in 2008, so may not be the case now.

Actually, I had a larger reusable bag with an even larger night bag but a number of variations were available and possibly still are.

Edited by member 26 Jul 2021 at 23:40  | Reason: to highlight link

Barry
User
Posted 27 Jul 2021 at 11:14

Hi LynEyre

When you say ".. and for some men Incontinence is permanent" What does that mean going forward, are there treatments for it?  That statement scared me a little I must admit!

regards

Trev

User
Posted 27 Jul 2021 at 11:49

Originally Posted by: Online Community Member

Hi LynEyre

When you say ".. and for some men Incontinence is permanent" What does that mean going forward, are there treatments for it?  That statement scared me a little I must admit!

regards

Trev

Trev,

Stop worrying about things, until you get there. Yes at the moment you have serious incontinence problems, but nothing unusual, hopefully your brain will start to work out what signals it has to send to stop you peeing yourself. Give yourself time to recover from this operation. 

Edited by member 27 Jul 2021 at 12:54  | Reason: Not specified

Dave

User
Posted 27 Jul 2021 at 12:46

Originally Posted by: Online Community Member

Hi LynEyre

When you say ".. and for some men Incontinence is permanent" What does that mean going forward, are there treatments for it?  That statement scared me a little I must admit!

regards

Trev

According to NHS data, about 10% of men are left with permanent incontinence, that should have been explained to you before you agreed to the op ... it is probably in your paperwork somewhere and there is information in the PCUK toolkit. Of the 10% with permanent incontinence, some dribble and wearing a continence pad is enough. If they are left with serious incontinence, there are sheaths like the Conveen that Barry mentioned or, in rare cases, the NHS may agree to an operation to fit an artificial sphincter. 

It is the luck of the draw. Any idea that men left with permanent incontinence just didn't do the pelvic floor exercises properly is a myth. The best surgeon in the world can't guarantee continence. Non-nerve sparing increases the risk of incontinence. But in context, 90% of men are using one pad per day or less at 12 months and some will only leak if they have been drinking beer -  they perhaps get used to always wearing dark trousers just in case. 

Edited by member 27 Jul 2021 at 12:52  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2021 at 14:34

Hi Lynere

Can I ask are you a professional in this field ?

User
Posted 27 Jul 2021 at 15:47
No - just lots of experience with my husband, dad and father-in-law, 11 years of being a member here and a lot of reading 😞
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jul 2021 at 23:16

Have to say I'm a tad sceptical of the official figures for urinary continence (UI) following a RP. All but one of the six men I know who've had a RP have complained of lasting UI since their RP. I seem to recall that you are not classed as suffering UI if after twelve months you are using less than two pads per day. One friend of mine who had a RP about a decade ago never stops complaining at having to use a pad whenever he goes out. He tells me his average leakage is around 5ml/day but can go up to about 50ml on occasion.

Another ia happy now but only because after suffering heavy UI for years post RP he was fitted with the sling and has now been dry for three/four years since. Yet another friend who is sadly no longer with us could never come to terms with his UI problem. There are others who I know of that continue to suffer, and like I said, just the one who was dry relatively quickly.

For myself I had a RARP and RT a dozen years ago and have neve stopped leaking since. I have changed my lifestyle in order to do everything I can to reduce it, eg eliminating all known dietary triggers (alcohol, fizzy drinks, tea, coffee, dairy products, tomatoes, etc), keeping fit, keeping my weight comfortably within recommended gudelines, doing pelvic floor exercises assiduously etc. I have tried several drugs, eg Oxybutynin, Tolteradine, Mirabegron, each of which produced improvements for a while but had to be discontinued because of serious side effects such as heart problems, sleeplessness, etc.

As for medical interventions such as the sling and sacral nerve stimulation, I was advised because of the effects of radiation these were probably too risky. On top of which a bad experience two years ago invovling a rigid cystoscopy to remove what turned out to be a phantom tumour in my bladder that immediately resulted in a tenfold worsening of my UI (up from around 20ml/day prior to the procedure to 200ml/day ever since) has left me resolved never to have any further interventions unless they are totally unavoidable.

Now, having said all that, I wouldn't want anyone to think I lead a miserable existence. Quite the contrary, I have never been happier! I enjoy my current lifestyle immensely and have learnt to live with all the inconveniences of UI. They are as nothing compared with what many have to put up with.

As we PCa sufferers all agree, life is to be enjoyed to the full, every single minute of every single day, and that is what I mean to keep doing no matter what life throws at me.

Whahey!!!

Edited by member 27 Jul 2021 at 23:24  | Reason: Not specified

User
Posted 27 Jul 2021 at 23:33

"I seem to recall that you are not classed as suffering UI if after twelve months you are using less than two pads per day."

This is correct, Lifestooshort. The NHS / BAUS definition of continent (for the purposes of reporting surgical outcomes on the lifestyle scale) is using one pad per day or less. Similarly, recovering erectile function is defined as an ability to gain an erection either naturally or using chemical / mechanical means; it doesn't specify whether the erection should be sufficient for penetration.

It is frustrating that this is still not always explained to men considering which treatment to have.

Edited by member 27 Jul 2021 at 23:34  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jul 2021 at 01:25

Just to post something a little more hopeful...

I had my partial nerve sparing RARP 16 months ago at the age of 68.

I've had some issues since that point with incontinence - the most general problem is having an urge to pee, even though my bladder isn't full. I have some control over that urge, but sometimes it gets too much and I have to dash to the loo. I've had two small accidents at night, which I can only explain by dreaming I was having a pee. I've had about half a dozen dashing to the loo after a walk and getting a severe urge as my key went in the door. I also had a small dribble roughly every other day.

Nurse put me on some Toltorodine but they didn't do much and the surgeon suggested I try some diet changes instead, I now have one decaf tea for breakfast and the rest of the time I drink herbal tea with no citrus (I used to drink Lemon teas a lot, but no more). This has actually seemed to help, but also it has got better over time. I find that drinking wine is no problem, but beer guarantees numerous visits unless it's a very hot day. No more dribbles and no more accidents for the last couple of months, so definite progress.

As I used to get urges due to increased prostrate size, I have been used to coping with the need to pee, and I've continued my coping patterns - don't drink too much liquid before going out, have a pee before I go and be aware of public loo locations. There are also a few well-watered bushes on my country walks.

You're obviously worse than I ever was, but there is hope things will improve and I would try whatever suggestions your medical team offer.

User
Posted 28 Jul 2021 at 08:06
With hindsight I have been very lucky - no incontinence anymore, a usable willy and very happy with my "lot".

At the time of my diagnosis I just went into "get it out mode" you listen to the informed consent speech but it doesn't sink in what the potential impact might be.

Vital that all PCA patients do their own research and come to their own decision in parallel with their medical team.

Would I have done the same things? Probably but that would have been an informed decision where I understood the likely outcome not a panic response where every set back was a suprise: Peritonitis, sepsis, incontinence, marriage breakdown, impotence, PSA anxiety, possibility of more treatment...

 
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