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

Notification

Error

Looking for success stories with continence 12 months plus after prostatectomy

User
Posted 21 Apr 2025 at 20:49

Hi,

14  months after surgery I am still on 2-3 pads a day. It's manageable, but a nuisance. Especially if I spend a lot of time on my feet - gardening/decorating needs doing and I could do without having to think about my bladder all the time. I've been to the PF physio, who has advised me to keep going with the PFEs. I have done them pretty much religiously since pre-surgery. I've used biofeedback for a while, which seemed to help, but it feels like improvement has plateaued. Physio advised against electo-stimulation as my PSA has been creeping up and I'm waiting for salvage radiotherapy. The oncologist was quite discouraging "It's not going to get any better now". Has anyone on here 'got there in the end' without any further intervention? I don't know whether to resign myself to further deterioration as a result of the radiotherapy. If it does I may think about the artificial sling thing. Has anyone any experience of that also? Thanks in advance. Chris.

Edited by member 22 Apr 2025 at 15:03  | Reason: Not specified

User
Posted 21 Apr 2025 at 22:51
Hi Chris

I can’t offer you any advice or even positive outcome but just to share our experience, as we are in similar position (except luckily psa remains undetectable).

My husband Steve had RARP in January 2024, PFE’s were done religiously as recommended in the hope of regaining continence over time. It did improve slightly after six months so we expected that to continue but he just stayed in the same situation, wearing 2-3 pads a day and has no control at all when standing. (When sitting or laying down the bladder can fill up so he gets the normal urge to go but other than that it’s a constant drip). Urologist said he was to give it 12 months before he would see him again. In that time we paid privately to have Emsella chair sessions just to say he had tried all he could, again no improvement.

Steve saw the urologist again in February and like you, he was told it won’t improve now, thought to be damage to the remaining urinary sphincter during RARP.

He has now been referred to another surgeon/urologist to discuss having an AUS (artificial urinary sphincter) fitted, we will also ask him about the male sling but we are told that the AUS is the gold standard in the UK.

Still awaiting that appointment, we were told it would take some time. It’s given us the chance to read up on it all and prepare questions.

Like you, Steve is managing to live a relatively ‘normal’ life, there are some things he prefers not to do now and he is fed up of it!!

So sadly, you’re not alone in this situation and we will let you know how things go, if there’s anything further to report that may help.

Take care

Debbie

User
Posted 21 Apr 2025 at 23:11

I don't think you're likely to see any more improvement after a year, if a pelvic health physio has checked and advised you've been doing pelvic floor exercises correctly. In support groups, we have had cases of men who were over-doing their pelvic floor exercises, which was reducing their continence - something they discovered by easing off them for a while.

At this point, you need referring back to urology to identify what the issue is, and which solutions might be viable. You probably want to try and have that conver5sation before the radiotherapy, in case there's a preferred order to tackle them, but that also depends how urgent the radiotherapy is.

User
Posted 22 Apr 2025 at 14:42

Thanks Debbie. Useful information regarding the AUS. I've been given a 'rest' from PF physio appointments, but will email them about that. All the best. Chris.

 

User
Posted 22 Apr 2025 at 14:48

Thanks Andy. I have a planning phone appointment about the RT on Friday. I'll see if they can offer any advice. I'll take your suggestion of contacting urology too. I'm 'only' doing three PFE sessions a day at the moment. Were the people 'overdoing it' doing more that that do you know? All the best, Chris.

User
Posted 22 Apr 2025 at 20:46
Chris, I am someone who wondered - in the way Andy has suggested - whether my pelvic floor exercises were actually tiring out whatever sphincters remained and contributed to leakage, I changed to doing the exercises only towards the end of the day when I had completed "risky" activities (like you I find gardening and decorating a hazard, but even going for walks has problems).

From where you are, even a small improvement would be helpful. For me the psychologically important stage was getting to when I never (or almost never) needed more than two pads a day. It was easy and inconspicuous to keep a spare pad in my back trouser pocket, and with the confidence that could get me through the day I was happy to resume all normal activity.

User
Posted 23 Apr 2025 at 10:00

Thanks J-B. I may well give that a try. That's pretty much where I am. Occaisonal 3 pad days, but mostly 'just' 2 (or 2.5!). It's the 'everyday' activities (upright ones like cooking as well as decorating and gardening), that I find most frustrating. I've been a runner for nearly 30 years and I seem to be able to just regard a pad as part of my kit. This seems to transfer over to walking. I do feel better psychologically if I manage on 2 pads though as you say. I veer between changing my behaviour to reduce pad usage and just getting on with normal activity and seeing what happens. The latter is less limiting, but reduces the chances of being able to see progress. I don't think I'm quite ready to give up the chances of that yet. All the best.

 

 

User
Posted 23 Apr 2025 at 20:25
Good luck Chris. I do pretty much anything I want these days, and just have to be aware of the possible need for a pad change late afternoon.

But having said that I am not a runner, to be honest I never was but used to go for a run occasionally just when I felt the need for exercise and that was the easiest option available. But I stopped before my prostate treatment due to knees aching and took to cycling instead, and that doesn't (for me) cause leak problems. Walking (we do quite a lot of hiking) is more risky, but gets worse later in the day so it's OK as long as we get off in good time. It is a bit frustrating for my wife who likes a sunset walk on a nice summer's day which I tend to decline because it doesn't suit my bladder.

Things can go wrong though. Most recently it was with a cold which went through all the stages and ended up with a cough: that really does put pressure on the bladder and I had a pretty miserable week until I finally got over it.

User
Posted 24 Apr 2025 at 15:39

Hi J-B. Thanks. Oddly enough running seems to reduce pad usage slightly. I can only think I'm sweating the fluids out. I suffered walking in the Peak District a few weeks ago though. Called in at a pub for a quick pint - not a good idea, at least padwise! Good to hear cycling is ok. I thought pressure in the err 'saddle area' might be difficult. All the best.

User
Posted 27 Apr 2025 at 23:39

Originally Posted by: Online Community Member
I'm 'only' doing three PFE sessions a day at the moment. Were the people 'overdoing it' doing more that that do you know?

They were doing the 3 sessions.

User
Posted 28 Apr 2025 at 08:27

Hi Chris

I am coming up to 10 months post surgery, and thought I had reached a point where I was reasonably stable. one level 1 pad during the day, and nothing at night. Running is a different matter, as I seem to leak a lot whenever I try and go out. However, last week, I woke up in the middle of the night wet through. I hadn't been doing anything different to normal, I don't drink alcohol anymore, and I hadn't overdone it on the coffee front, so I've absolutely no idea what triggered it. Very depressing. I do PFE about 3 times per day most days, although I can tend to forget at the weekends if we are busy.

Ian.

User
Posted 28 Apr 2025 at 16:41

Hi Ian,

Commiserations on the running front. I have been able to run since about 8 weeks post op. Couldn't do 5k at first, but now back up to 10m (on one pad). Very odd how it appears to affect people differently. Luckily I've not had any 'surprises' like you mention - unless beer and being upright were involved (touch wood). I'm hoping to do the Round Sheffield Run at the end of June. I did it last year 4 months post-op (with a pad change halfway round). Depends on getting my 4 weeks of radiotherapy out of the way and recovering in time. You're right, it can be very depressing though. Can you get out on the trails and get far enough with a discreet pad change or two? All the best.

Chris.

 

 

Edited by member 29 Apr 2025 at 09:02  | Reason: Not specified

User
Posted 28 Apr 2025 at 17:03

A question, 'What are the standard NHS pads?' I started on Tena active Fit, level 2. The ones that are cup shaped and I was given several packs on discharge after RARP in august 2024. Once I was passed on the Continence Service, I have been supplied with Tena Comfort Mini (5 drips on the package). I regularly run 6 or 7 miles, walked 8.5 on the Moors yesterday and am comfortably on 1 pad/day. I keep thinking of trying the smaller pads but have so many of these 1 pint capacity that it feels safer. are we talking the same pads?

User
Posted 28 Apr 2025 at 21:14
Good point Broomfield, I don't think Chris said what pads he is using. I haven't had pads offered through the NHS so I normally use theTena 2 which are widely available from Tesco or similar shops. I don't think they would hold as much as a pint.

Our local Tesco now stocks some other Tena versions, and I have found Tena 3 helpful on the (not that frequent) occasion we are invited to a party - the situation of being standing for hours with a glass being refilled by the host (and me losing count) is particularly risky. But otherwise I find them a bit bulky.

User
Posted 29 Apr 2025 at 09:13

Hi,

I'm using the Tena level 2 you mention while I'm running, but Abena Man Premium (Formula 1) at other times. These are bulkier (and slightly cheaper), but I think they're supposed to be the same capacity. The Abena ones (and the Tena's) are available via Age UK https://www.ageukincontinence.co.uk/incontinence-shop.html . You can get a subscription, which is fairly flexible - you an add/remove items each time - and gets you a small discount. All I have been offered via the NHS (apart from the small initial supply) was a huge amount of absolutely massive pads, which I sent back. If anyone knows of a way to get suitable sized ones via the NHS I'd be pleased to hear about it.

All the best

Chris

User
Posted 07 May 2025 at 20:40

I had an appointment with the consultant yesterday. He was also of the opinion that my continence problems will not improve after this long - ho hum. He's recommending urodynamics and a bladder inspection ahead of deciding if I want a mesh support or AUS. None of this will happen until after my RT, so at least 4 months, but has anyone got any experience of either of those? Right now, more surgery and potential cmplications doesn't sound that appealing - if I can live with ongoing pad usage. Also, I'm thinking of stopping doing PFEs. He said I could carry on if I thought they were helping. Anyone any experience one way or the other? I'm thinking not doing them might help me come to terms with the situation, rather than be reminded of it 3 times a day. Any comments appriciated.

All the best everyone

Chris

User
Posted 08 May 2025 at 08:06

Morning Chris

I had a similar conversation with my consultant at my last meeting. He doesn't hold out much hope of further improvement after this long, and said that at our next meeting in June, if there hasn't been any, he will be recommending having some corrective treatment. He mentioned Sphincter bulking, which having had a quick google, doesn't sound particularly appealing. I can't really face the thought of another week or so with a catheter, following the disaster I had when the last one was removed. I think I will probably just put up with using the 1 pad per day that I currently need in general. Interesting question regarding the PFEs. I am terrible at remembering to do them some days, but find that if I do too many (the recommended 5 sets daily) it seems to make things worse. I've read on here somewhere, that if you get your core muscles strengthened sufficiently, you don't need to do the PFEs? Trial and error job, I guess.

Ian.

User
Posted 08 May 2025 at 09:11

Originally Posted by: Online Community Member

I had an appointment with the consultant yesterday. He was also of the opinion that my continence problems will not improve after this long - ho hum. He's recommending urodynamics and a bladder inspection ahead of deciding if I want a mesh support or AUS. None of this will happen until after my RT, so at least 4 months, but has anyone got any experience of either of those? Right now, more surgery and potential cmplications doesn't sound that appealing - if I can live with ongoing pad usage. Also, I'm thinking of stopping doing PFEs. He said I could carry on if I thought they were helping. Anyone any experience one way or the other? I'm thinking not doing them might help me come to terms with the situation, rather than be reminded of it 3 times a day. Any comments appriciated.

All the best everyone

Chris

 

Chris, I was referred to the continence service before my surgery and had 120 tena pads arrive before surgery. Although 99 percent dry after surgery other issues has left me using one pad a day, sometimes it is dry, sometimes a teaspoon of urine. I get my pads free from the NHS. In some areas you can self refer to the continence service. The NHS in our area has changed from Tena to Attends pads, the Attends pads do not have the same sizes as the Tena. I had to go up a size, it is overkill but is comfortable and effective.

Thanks Chris 

User
Posted 08 May 2025 at 09:18

Thanks Ian,

I know what you mean about the prospect of further surgery - not appealing at all. I'm hoping that now I am fairly sure ther's not going to be any further improvement I can stop worrying/getting frustrated about it that I'll be able to try and manage/come to terms with it. I can get down to 2 pads/day with planning, but I think I'm going to try just to behave 'normally' and see what happens. If I can keep at 2 (it might be 3) and be confident of no leakage I'll probably stick with that - no choice for the time being, so will give it a go. Yes, I've been trying to work out a good set of core exercises, but it keepsgetting overtaken by other things. As you say, trial and error.

All the best

Chris

 

 
Forum Jump  
©2025 Prostate Cancer UK