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Access to an Incontinence nurse

User
Posted 19 May 2025 at 19:06

Hi All

I had surgery to remove my Prostate in January ,at my 12 week review my surgeon advised me that I was behind the majority in terms of incontinence,I am currently on 3 pads minimum per day and more if I do anything particularly energetic.Looking at the posts on here I am not sure if he is correct .I know that we are all a bit different ,but the message I get from most posts is to persevere with the pelvic floor exercises and most of us will see improvements albeit after 6,9 or 12 months.I did ask about seeing an incontinence nurse ,my appointment arrived today ,it is a telephone consultation in November !!

I am just wondering if others have seen an incontinence nurse and if it was beneficial or not ?

until then I will just keep on squeezing 😂😂

 

 

User
Posted 20 May 2025 at 07:42

Just bumping this up for visibility. 

November seems a long wait!

User
Posted 20 May 2025 at 11:14

Sadly this is the state of affairs! My Husband is 16 months post RARP and at just over 12 months of PFE’s and a consultation with urologist, it was decided his continence would never improve without further surgical intervention (male sling or artificial urinary sphincter), apparently because his bladder sphincter was damaged during surgery (which does happen in 5% of prostatectomies with the difficulty of rejoining the urethra)

He was however put on a list to see incontinence nurse anyway (whilst we are waiting for appointments to see another surgeon specializing in the required surgeries)…. So that was in February and still no sign of an appointment (we were warned it was a long waiting list!).

It’s the same with getting help with ED; Steve was 75% nerve sparing so should regain some natural function although the timescales likely to be post 2years RARP; again he was referred to ED clinic in February and still waiting. Our GP has been helpful in the meantime prescribing Sildenafil and then Tadalafil but no success with either; we are just waiting for next GP appointment to discuss injections (as well as trying, not very successfully to use the pump, we need to persevere with this, but it’s difficult as the incontinence doesn’t help!)

I’m afraid it’s a long and frustrating process and we are just trying to be grateful through it all that the cancer is gone and psa readings have all been undetectable!

Stick in there, it is still early days for you and the time does pass quickly! I hope the incontinence does improve on its own, but if it doesn’t, you do learn to carry on with life and adjust.

 

Edited by member 20 May 2025 at 11:16  | Reason: Sp

User
Posted 20 May 2025 at 22:47
Hi

I am in Birmingham, I must say up until now my treatment has been very good.

My main reason for wanting to see the nurse is to get some reassurance that the pelvic floor exercises I am doing are being done correctly,as this is the best means of regaining continence.I have watched many videos but just want to make sure 👍 My Post op results have been good so I am viewing the incontinence and ED as no big deal(although it is really 😂😂😂)

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User
Posted 20 May 2025 at 07:42

Just bumping this up for visibility. 

November seems a long wait!

User
Posted 20 May 2025 at 09:03

It's at least 166 days and at current usage 498 pads away. Disgraceful.

User
Posted 20 May 2025 at 11:14

Sadly this is the state of affairs! My Husband is 16 months post RARP and at just over 12 months of PFE’s and a consultation with urologist, it was decided his continence would never improve without further surgical intervention (male sling or artificial urinary sphincter), apparently because his bladder sphincter was damaged during surgery (which does happen in 5% of prostatectomies with the difficulty of rejoining the urethra)

He was however put on a list to see incontinence nurse anyway (whilst we are waiting for appointments to see another surgeon specializing in the required surgeries)…. So that was in February and still no sign of an appointment (we were warned it was a long waiting list!).

It’s the same with getting help with ED; Steve was 75% nerve sparing so should regain some natural function although the timescales likely to be post 2years RARP; again he was referred to ED clinic in February and still waiting. Our GP has been helpful in the meantime prescribing Sildenafil and then Tadalafil but no success with either; we are just waiting for next GP appointment to discuss injections (as well as trying, not very successfully to use the pump, we need to persevere with this, but it’s difficult as the incontinence doesn’t help!)

I’m afraid it’s a long and frustrating process and we are just trying to be grateful through it all that the cancer is gone and psa readings have all been undetectable!

Stick in there, it is still early days for you and the time does pass quickly! I hope the incontinence does improve on its own, but if it doesn’t, you do learn to carry on with life and adjust.

 

Edited by member 20 May 2025 at 11:16  | Reason: Sp

User
Posted 20 May 2025 at 12:25

This is dreadful that there should be such a delay in getting support for post operative consequences. How much of it is geography related? You don't say where you are. I'm now 9 months post operation in Teesside and went from catheter removal to a continence service appointment in only a couple of weeks. I've had one other physical appointment and have been able to phone them and get answers to questions quickly. Is this unusual?
As for ED, I had 50% nerve sparing but life is very quiet down there still. I've had phone calls from the ED service but to make matters worse, I had an adverse reaction to sildenafil. It then took a while between GP and service before I was prescribed a vacuum pump. It's still a work in progress.

Overall though, I am very happy with the post operative support I've had from Teesside. Sounds like that's not always the case.

User
Posted 20 May 2025 at 22:47
Hi

I am in Birmingham, I must say up until now my treatment has been very good.

My main reason for wanting to see the nurse is to get some reassurance that the pelvic floor exercises I am doing are being done correctly,as this is the best means of regaining continence.I have watched many videos but just want to make sure 👍 My Post op results have been good so I am viewing the incontinence and ED as no big deal(although it is really 😂😂😂)

 
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