Incontinence problems post op

To give you the expected generic answer "it is early days" and that is because it still is early days. To get to the nitty gritty, how much are you leaking into the 6-7 pads, is it a constant dribble or do you suddenly leak a large amount in one go, how much do you urinate normally through the penis, how much are you drinking and equally important what are you drinking, are you doing the PFEs correctly and how many are you doing and how often ? Is it better at night than in the day, is it worse when you are moving about ?

Does your hospitial have an incontinence nurse, if so get a referral ? You will probably be asked to monitor your intake and output and record it in a form. Google "incontinence chart" and you will see an example of the typical details required, my nurse wanted a three day record . To get the volume of leak into the pad simply weigh the wet pad then subtract the weight of a dry pad from the wet pad, one gram is equal to one ml so 300g is 300ml. Accurate kitchen scales are relatively cheap. Get a urine bottle to measure the output from the penis, some bottles have a measurement scale on them, if not use the same method as getting the pad volume.

Are you doing the PFEs correctly, there is a brilliant app for android smartphones called prostate aerobics that gives you some tuition and reminders. Not something to do on a regular basis but can you actually stop urinating mid stream ?

The blood that you passed may have been congealed blood or a scab coming away and may have been partially blocking the urethra and helping with the continence. From my own experience a blockage in the urethra probably helped me regain my incontinence quite quickly.

6-7 pads is an awful amount per day, are you changing them each time you leak ? Which pads are they and do you have confidence it thier ability to absorb a leak, I stood in the shower with a pad in my underwear and let it leak, it gave me the confidence to get out and about. The tenna 2 pads are supposed to hold around 750ml but a really big leak at a good flow rate might not be contained.

On the subject of flow, if you do get a urine bottle you can divide the volume of urine by the time taken to pass the urine to get a flow rate.

There are various options you can consider in the future but no doubt your medical staff will want you to perceiver at such an early stage. There is no all fits one answer but 6-12 months is often quoted for "full" recovery.

Best wishes for a speedy recovery.

Thanks Chris

On a positive note he had great news about the histology report in that the cancer seems to have been contained. All the margins etc were clear.

We are disappointed however that both the surgeon and specialist physiotherapist have both advised him not to use an external catheter, dribble stop clamp or anything other than pads.They believe this delays the continence recovery as the mind/ muscle connection is affected and you will not develop the muscle control needed. So he is only using these occasionally when needs must however as he is a self employed electrician it makes it very difficult to return to work as he would constantly have to change large cumbersome pads.

The surgeon has said he expects there to be a big improvement in the next 3 months so we will need to be patient. Problem is no surgeon can guarantee you will be fully continent eventually. From what I have read if there is no improvement at all after 6 months there is unlikely to be any significant recovery after that.

We live in hope that because he is dry at night and when sitting he will get there albeit slowly.

He had a large prostate, pelvic adhesions (of unknown origin) and non nerve sparing surgery so any of the these or in combination might be the reason.

Interestingly but much to my husband's embarrassment ( you would think he would be over it by now😊) the private physiotherapist said the only way to assess the pelvic floor was via a DRE and he had to follow her instructions whilst said finger in situ!!!

I don't think he's looking forward to the next appointment next month. She said there was a lot to work with😐 and only rated his pelvic floor strength to be 3/10.

Cheers

Ann

Hi Jimmy, I had my prostatectomy at the end of August and have had similar experience to you i.e. incontinence not too bad when catheter first removed then after about 3 weeks suddenly much worse.

How are you now?

Has anyone else out there had this?

I am reasonably dry at night, getting up 3 or 4 times to pee, but during the day it just runs out of me.  The consultant has put me on Solifenacin but after 3 weeks still no improvement.  He says it can take 6 weeks to work and has suggested I start taking Duloxetine as well, which apparently can improve the sphincter, but I'm reluctant to start something new until I know whether the first drug is working.

Any information or advice will be greatly appreciated.

Thanks

Free event-for men experiencing side effects, such as leaking of urine after treatment

We have a free event in Birmingham on 17 November 10am-3pm

Come and hear from mens' health doctors from the west Midlands to find out what they can do to help with these problems.

Where?

Aston Villa Football Club.

Lunch is provided. 

Register here

Any questions, just ask.

Zoe,

Communications Officer, Prostate Cancer UK

Hi, I had my OP 29th Sept 2016, my catheter was in for 3 weeks, I did not drive for 3 months, when the catheter came out I leaked and leaked, a guy on this site replied to my post and said the first 4 weeks are the worst, things started to improve now after over 2 years I still wear the smallest pad just for drips and dribbles, I don't think I will ever be completely dry but if we are honest who is, my PSA is undetectable so not complaining, if you have a Android phone download the free APP prostate aerobics it is very good, to those of you who say they were dry from the start you are very lucky,
best wishes
Paul

I don't know, it is an Android APP, when I downloaded it there were several

I had my prostate out January 2016 (robot). I leaked terribly for 8 weeks then quite suddenly I got most of my continence back. 3 years out I don't have any continence problems day to day with the following exceptions:
1. Hill walking. Have to use a pad. By late afternoon I've lost control. I guess my pelvic floor just gets tired.
2. Running. Solution is to run before breakfast while my bladder is empty.
3. In the gym. There are some exercises that make me leak if I do them too vigorously. TBH I find it embarrassing wearing a pad in the gym so I just avoid those exercises.

I've recently been trying to improve my pelvic floor using the NHS Squeezy app.

Another suggestion. In addition to the standard Pelvic floor exercises, I have taken up Pilates. As well as good exercises for the right areas, it is improving my feel for which muscles control what.

I had my prostate removed in June. I have done reasonably well for incontinence. Most days are now dry, but need to stay aware and I do wear a pad. Over night I seem to leak 2-3 ml.

Just keep going!

Alan

PFEs and TENS will do nothing to help a man whose urethra, sphincter or pelvic floor is permanently damaged during the RP.

It is important not to imply or get the impression that men left with permanent incontinence (or even temporary incontinence but slow progress) have somehow just not tried hard enough or didn't put the work in.

I suppose most men become more or less continent eventually. Or do they not?

Cheers, John.

I would agree with that as my husband is about 90 - 95% there after 12 months. I think they do play down the likelihood of not being 100% to make their statistics look better.

When my husband told the Urologist he wears one pad during the day and a smaller one at night ( often dry but for security ) he ignored this and just mentioned the use of one pad on the letter to the GP. He has probably been put into the NHS stats as continent.

Edited by member 27 Dec 2018 at 12:55  | Reason: Not specified

Hi Paul .  I would be interested to know if you found any improvement in your continence between the 12 - 24 month stage. If so how much. We are not expecting any now but would be great if there was.

Best wishes

Ann

Thanks for that Paul. Most of what we have read suggests there is no improvement after 12 months however Patrick Walsh the American urologist who first identified the neurovascular bundles and developed the first nerve sparing prostatectomies reckons recovery can continue up until about 2 years albeit  very slightly for the 2nd year following surgery.

Best regards

Ann