Looking for success stories with continence 12 months plus after prostatectomy

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

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.

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.

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.

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

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.

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 

Thanks Chris,

I have a feeling the continence service round here only provides the Attends - which I was supplied with initially, but they were massive. Maybe now it looks like I'm in it for the long term I'll give them another try.

All the best

Chris