Incontinence problems post op

User

Posted 04 Feb 2018 at 21:53

Hi, I'm new to the site, and probably joined at a late stage as I'm in my 7th week post robotic removal of my prostate.
I'm seeing the consultant for the first time since the op, and no doubt when I voice my concerns I'll be told to be patient etc etc.
Incontinence is my biggest concern, and probably oddly more of a concern to me than hearing about what my PSA level and biopsy of the offending organ is. I'd like to know if anyone has experienced similar symptoms to me - after the catheter removal (which leaked a fair bit when in but medical staff thought it was OK) I did experience a fair bit of incontinence which I half expected, but it did seem to be easing off in the next 3 weeks. Then I had one episode where I pee'd a fair amount of blood, but then that bleeding stopped. Thereafter the level of incontinence has since steadily increased, even to the extent that immediately after PFE I leak like a sieve and am using between 6 and 8 pads a day. Has anyone experienced similar problems? I know I can ask the consultant when I see him, but after reading quite a number of posts I'm not necessarily convinced I'll be given a straight answer and just be fobbed off with being given what seems to be the generic answer of being patient - which you may gather I'm not.

User

Posted 05 Feb 2018 at 08:02

I am the same stage as you (7 weeks post op) my incontinence is starting to get better. You must raise your problems with the Consultant as your symptoms seem much worse than expected.

User

Posted 05 Feb 2018 at 08:21

J

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

User

Posted 05 Feb 2018 at 08:22

Have you got a specialist nurse you can contact between appointments?
If I were you I’d contact them or the hospital to get yourself checked out.
I saw a physiotherapist about 8 weeks post surgery who checked I was doing pelvic floor exercises properly, I presume you are doing these exercises?
Best wishes, Ian.

Ido4

User

Posted 05 Feb 2018 at 15:27

Hi Jimmy My husband's continence situation is similar to your own. Slightly improving from about week 4 then he got some old blood in his urine then had it return to square one. He has also had a bit of a urine infection very recently but a course of antibiotics has hopefully sorted that out. Have you had your urine checked for an Infection?

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

User

Posted 08 Feb 2018 at 14:52

Thanks everyone, I appreciate your taking the time to respond, and in some perverse way glad to hear my issue,
I’ve now seen the consultant, and the good news is I’m clear of the cancer and all within peramiters. I had nodes and nerves removed from right side so this, from what I’m hearing from you all, may be part of the incontinence problem. Meanwhile the consultant has apparently made an urgent appointment for me to see the continence nurse and physio.

I have been doing PFE regularly since about 6 weeks before the op, with the only time not doing them when the catheter was in. I’m doing them between 6 and 8 times a day, but whether it’s properly is another question but was told by a urology nurse (who made me drop em and do them in front of her) that I was. However, my problem is immediately after I stop the exercises I leak, and when standing or walking around I dribble for England., oh and I ocasionally get a pain in the perineum after exercising. As for what I’m drinking, probably 4 or 5 cups of decaf tea/coffee and a couple of glasses of cranberry juice and A glass or two of water a day. I did have a utrinary infection which cleared up after a course of antibiotics - I had that rechecked and am OK.

I haven’t tried the measuring business yet, but will give that a go, and the pads I use are Tena medium during the day. I haven’t been brave enough to try sleeping without a night pad on as so far they’re pretty full when I get up,

Pragmatically, I will have to persevere with it and hope things do start to get better, and also wait and see what the continence specialist and physio say.

Thanks again everyone for your input.
Jimmy

User

Posted 02 Nov 2018 at 18:38

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

User

Posted 06 Nov 2018 at 07:58

Hi, I went through all this over two years ago 29th Sept 2016, I still use the smallest pad for security small drips and dribbles but PSA undetectable, I think the men that say they are dry straight away are very very lucky, I was told that if you can stop the flow or urine mid stream than things should get better, I think it is all down to the surgeon, I was told to ask how many ops he has performed and if it is less than 400 then find another surgeon mine had done over 500, I had the catheter in for 3 weeks, did not drive for 3 months but had no blood whatsoever, best wishes to you all

User

Posted 06 Nov 2018 at 15:50

My surgeon has done over 3000 prostatectomies and does 300-400 a year. I was virtually continent from when my supra-pubic catheter was removed on day 10. A few accidents afterwards of course!

To anyone new here, as you say, go for a high-volume surgeon with excellent outcomes. My surgeon said he wouldn’t send friends or family to any surgeon that does less than 100 a year. Practice makes perfect.

Cheers, John.

User

Posted 06 Nov 2018 at 19:25

Hi,

I am always one for spreadsheets so i set one up to measure my urine leakage from day 1 of post catheter removal. Also recorded lots of other items such as flow rate and amount bladder was holing. You can weigh the pads dry then wet and record the difference the weight equals ml. Just wanted some accurate results to review with the Consultant and Physio, i always sent the my spread sheet in advance of my appointment. Sure some day are worse than others which was totally linked to activity. I was stress leaking 350ml in the first four weeks then a range of 200 to 300 weeks 5 to seven then a gradual decrease to being dry 3 months and two weeks. Stick with it we are all different.

User

Posted 08 Nov 2018 at 12:40

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Where?

Aston Villa Football Club.

Lunch is provided.

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Any questions, just ask.

Zoe,

Communications Officer, Prostate Cancer UK

User

Posted 12 Nov 2018 at 21:03

I was on a good number of pads after 6/7 weeks. I remember having to change pads half way through a round of golf. We are all different, but a pad a day is all I need now. Keep persisting with the pelvic floors.

Stay Calm And Carry On.

User

Posted 14 Nov 2018 at 12:41

I seem to have hit a wall. My op was in April. For the first couple of months there was a straight channel from mouth and out using 5 pads a day. Over the following 3 months a steady and gradual improvement until down to effectively less than 1 a day. And there it has stayed for the last couple of months with no further improvement. I know there is no such thing as typical but has anyone else experienced similar and got past it and if so how long was the “stall” in improvement. Still doing the PFEs and hoping.

User

Posted 14 Nov 2018 at 13:05

Hi Targus, I am in the same position, Radical Pro in January, terrible leakage for months, now down to one pad per day still not confident about going without. I seem to be dry every night (with pad) but do get up 3 or 4 times a night. As other sufferers say it really does take time.

Looking at some replies, fellow sufferers saying pick your surgeon wisely, who gets a choice?? I was told to turn up, had no idea who was going to operate and only met him 3 months after surgery!! Who gives you a list to pick from? I certainly didn't get one!

I would also welcome any advice on how to be pad free.

Best wishes to all fellow sufferers.

Barry

User

Posted 14 Nov 2018 at 18:36

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

User

Posted 14 Nov 2018 at 20:53

Is the prostate aerobics app still available, I changed my phone a few weeks ago and cannot find it to reinstall.

Thanks Chris

User

Posted 15 Nov 2018 at 07:27

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

User

Posted 09 Dec 2018 at 21:26

I recently downloaded the NHS Squeezy App for my phone. Highly recommended. Before I had the app I found it difficult to remember to do the exercises for the right duration and at the right time, but the app really helped me.

User

Posted 09 Dec 2018 at 21:33

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.

User

Posted 10 Dec 2018 at 15:45

Hi All,

Prostate out in July this year.

I found the pelvic exercises awkward, but tried to get on top to some extent. as like a few, leaks and dribbles come on at anytime, apart from either sleeping or sitting down. i have had to increase the number of pads from 2 a day to 3-4, depending upon work and exercise.

I have invested ££ in a pelvic floor tens machine(like bicycle shorts) from a company called Innovo, 30 minute session, daily, this is working well and seem to be improving said muscle group, just a thought for anyone struggling?

take care guys,

Andy

User

Posted 10 Dec 2018 at 17:28

Hi All,

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

User

Posted 10 Dec 2018 at 18:11

Quote:

Andy63;206331

My husband bought one of these as he wasn't sure that he was doing the pelvic floor exercises correctly even after enlisting the help of a private physiotherapist recommended by his consultant. He feels it is helping and has noticed a slight difference. Worth trying I think but can't work miracles for everyone.

Healing time and the usual pelvic floor exercises seems to be the answer for most men but there will always be some men who never get to 100% continent. My husband is about 90- 95 % 12 months on from his RARP although mainly on heavy exertion at work.

Best Regards

User

Posted 10 Dec 2018 at 18:40

Pelvic floor exercises (or Kiegels) will help men who are left with stress incontinence after RP, as will TENS machines in some cases.

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.

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

User

Posted 26 Dec 2018 at 22:16

Think I've been really fortunate had op on 10th of November,completely dry at night,and just a little dribble in the day,but only if i cough,my recovery up too now as exceeded my expectations

User

Posted 27 Dec 2018 at 06:41

And another point to remember, regardless of the skill of the surgeon, is the extent of the cancer, as to how much has to be removed and what can safely be left behind to help with post-operative continence and future erectlie function.

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

Cheers, John.

User

Posted 27 Dec 2018 at 11:53

90% of men that have had RP become continent within 1 year of the op. However, the NHS stats include 'using 1 pad per day or less' as continent, which men who need to use one pad a day will tell you doesn't feel like being continent. There is no statistic for how many men are still using pad(s) at 12 month point but our uro says it could be as high as 30%

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

User

Posted 27 Dec 2018 at 12:51

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

User

Posted 27 Dec 2018 at 16:32

Hi all, I am over 2 years post OP, i wear one of the lightest pads during the day for security mainly drips and dribbles after going to the loo, any men that are 100% continent are very lucky, I think age plays a big part as all the muscles get weaker with age anyway, I am 68 PSA undetectable so happy with that

best wishes

User

Posted 27 Dec 2018 at 17:47

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

User

Posted 27 Dec 2018 at 19:32

The first 4 months were the worst it was awfull then there was a gradual improvement every week, after a walk I could hold urine until I got to the loo, I was told if you can stop the flow then continence should improve, I am now over 2 years since my OP, I am dry at night and use the smallest pad during the day for security, just small drips and dribbles after I have been to the loo, I am 68 so who knows if it would be like it anyway, I use the prostate aerobics app which you can download free for Android phones but there are other apps, hope this helps, just remember it takes time and everybody is different,

best wishes

Paul

User

Posted 27 Dec 2018 at 19:49

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

User

Posted 29 Dec 2018 at 16:03

Originally Posted by: Online Community Member

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

User

Posted 30 Dec 2018 at 12:00

Hello John. I was really interested in your comments.I'm 6 months after RP.

If you asked me now my two main problems would be hill walking and jogging.

The hill walking took me completely by surprise and I hoped it might improve after laying off it for this December. I'm interested to see that you have continued to leak while out walking.

Jogging also has it's issues but can walk fairly consistently (on treadmill not hill walking) at about 5.5kph without leaking. That's why I was very surprised at the hill walking causing so much leakage.

I've also been trying to work out which exercises: crunches, planks etc I can do which are not working against the pelvic floor exercises.

I find I can cycle for a long time without leaking at all so I've moved more on to that these days.

I'll look at your app as I've become a bit forgetful of pelvic floor.

Thanks Hugh

Edited by member 30 Dec 2018 at 12:45 | Reason: Some comments a little unclear

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