Incontinence after Radical Prostectomy

User

Posted 16 Feb 2017 at 08:59

I had a Radical Prostectomy 13 months ago, the surgeon said incontinence would not be a problem.

At first I was using 5, level 4 pants a day - after 13 months I am down to 1, sometimes 2 absorbent pads a day, I've read some men take 18 months to become dry.

I would appreciate others that had a this problem, the two men I know that had the same op were dry within 6 months.

Richard

User

Posted 18 Feb 2017 at 19:50

Hi

Welcome. . I was just browsing and saw you have had no response to date. So bumped thread.

I'm not in position to advise .. see my profile as I was dry as catheter removed. I was expecting a few months. So must be down to skill of surgeon and luck.
It was made very clear to me that incontinence and ED would be high possibilities, .. at least for a few months for the former.

I did find.

http://community.prostatecanceruk.org/posts/t11174-Incontinence-1-year-on-after-a-radical-prostatectomy

There are some good info on threads however I don't find it easy to search... hopefully someone will respond. .. as can be quieter at weekends.

All the best
Gordon

Edited by member 18 Feb 2017 at 19:57 | Reason: Not specified

User

Posted 18 Feb 2017 at 20:21

Hi Richard, how sad that your surgeon did not give you realistic expectations of the treatment option you had chosen. As you are only 13 months post-op I assume you are still under his care? What has he said or done about it?

The official NHS statistics say that 90% of men will be dry by 12 months after surgery but they count 'dry' as using one pad or less per day. So officially you are almost dry although it won't seem that way to you.

Why are you still leaking and what can be done? Well that depends on what is causing your incontinence. when you had the op they cut through your urethra and some of the pelvic muscles that control the bladder - your brain has to relearn how to control the muscles much as when you were being potty trained as a toddler.

The other type of incontinence is as a result of permanent damage being done to either the urethra, the muscles or the valve that opens and closes your bladder (for some men this has to be removed and then replaced during the op, not always successfully). This type of incontinence cannot get better by itself and may need further surgery.

If you are dry at night and only leak through the day you are more likely to be suffering the first type in which case you need to make sure you are diing your oelvic floor exercises correctly and possibly ask for a referral to the incontinence clinic to see whether bladder retraining would help.

If you leak day and night then the more serious damage may have been done. Sadly, if your surgeon was dismissive of the risk beforehand he may not be very proactive in getting you further help now. What you need is proper resting of your flow rate, your fluid intake and output and probably a scan to see how well the valves are working. If the surgeon won't arrange this, speak to your nurse specialist or ask the GP for help with a referral to the incontinence clinic.

Don't be fobbed off.

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

User

Posted 18 Feb 2017 at 20:23

PS you dont say whether you are still doing your pelvic floor exercises, how many, how often and whether you were ever shown how to do them correctly?

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

User

Posted 28 Feb 2017 at 10:30

Many thanks for your help.

The advice I had before Radical Prostectomy was to expect incontinence for 6 months, the two people I know that had RP were nearly dry at 6 months.

I seen myself consultant last week, I was disappointed he suggested surgery - I'm really stressed with a business I started and am concerned about the recovery time.

I feel I am making progress, it seem I was more effected than most that have RP.

After catheter removal I was getting through 5 level 4 pants a day, each take over half a pint, I would feel the need to pee but it would have passed to the pants by the time I got to the loo, at 5 weeks I arranged to meet a friend in town, I put on new pants, after parking I walked 5 minutes to buy more pant, on my return to the car the pants were full - I had to take supplies every time I went out any ways always worried about having an accident !

I asked my consultant if stress and the cold weather could be making matters worse, and he agreed it could, we will put off a decision on surgery, I will have another consultation in three months.

I am still doing the pelvic floor exercises at least 4 times a day, after seeing a physio 6 months ago I'm sure correctly.

I have a small pad at night and don't soil much, but have to use the loo at least 3 times.

I was prescribed Duloxetine 20mg they didn't help and after six weeks stopped taking as they made me very tired.

I would welcome others experience - a google search show some people getting dry without surgery after 18 - 24 months

User

Posted 28 Feb 2017 at 14:47

Hi Richard,
I had the Op 29th sept 2016, I had the catheter out 3 weeks later and leaked and leaked, it really got me down, I could feel myself peeing all the time and it was horrible so I know how you feel, I have read that it can take anything up to 2 years to get dry as it is down to lots of things such as experience of surgeon etc, also age can play a big part as the older you are the weaker the muscles and the longer they will take to get up to strength, there is a phone APP for Android called Prostate Aerobics which you can download for free it is very good, I am down to 1 small pad a day now and dry most of the time just small drips and dribbles, all the men who are dry straight away are very very lucky but I don't think there are many, everyone is different, hope things improve soon,
best wishes
Paul

User

Posted 01 Mar 2017 at 09:34

Hi Paul

Thanks for your message, I'll check out the app you suggested.

It's really good to hear how others are effected.

Best wishes

Richard

User

Posted 01 Mar 2017 at 10:59

Hi Richard

Have a quick look at my profile (click on the username to the left). It is reasonably up to date and gives an idea of the options if PFEs don't work.

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 02 Mar 2017 at 09:53

Hi Tony

Thank you for sharing, You have really been through it, hoping more than ever the PFE work.

It was good to learn that the end result was good.

Best wishes

Richard

User

Posted 02 Mar 2017 at 11:51

Hi Richard.

Is anything improved. Lynn makes very key points. You need to get proper diagnosis before 3 months. Ie as I understand 3 muscle groups and nerve control obviously. Very complex. Things that spring to mind .. are you voiding completely or retainining any urine. Dry at night ?
Are you restricting or even avoiding caffeine and alcohol completely?

I was so so lucky as dry in less than 48 hrs , however visiting urology twice and the lady there was so professional and informative. She told me to cut out any cranberry and fizzy stuff. Treat the bladder kindly etc.
Although I do Pfe before and after. I can't hold muscle for more than 3 or 4 secs. However I can do at least a minute of very quick pulls. I don't do them every day. I do these random. You need to find out whether this is muscle or nerve signal. On another positive it's been 2 yrs since my RP and ED is going in the right direction., excuse the pun. So nerve signal rerouting . Maybe regrowth does occur. I have zero nerve sparing. There's massive trauma in that area as you know. You need to start making noises in my opinion. I'm no expert however urology has plenty of gadgets to see exactly what is going on with you.

Hope this helps.

Edited by member 02 Mar 2017 at 12:06 | Reason: Not specified

User

Posted 02 Mar 2017 at 12:17

Originally Posted by: Online Community Member

Hi Richard,
I had the Op 29th sept 2016, I had the catheter out 3 weeks later and leaked and leaked, it really got me down, I could feel myself peeing all the time and it was horrible so I know how you feel, I have read that it can take anything up to 2 years to get dry asit is down to lots of things such as experience of surgeon etc, also age can play a big part as the older you are the weaker the muscles and the longer they will take to get up to strength, there is a phone APP for Android called Prostate Aerobics which you can download for free it is very good, I am down to 1 small pad a day now and dry most of the time just small drips and dribbles, all the men who are dry straight away are very very lucky but I don't think there are many, everyone is different, hope things improve soon,
best wishes
Paul

Hi Paul
Many thanks for heads up re. App.
Very useful. Used it this morning. I realise I major on quick type and not endurance. .so will use this from now . Should improve ED more. I was very fortunate, expected incontinence and was fully briefed, yet another pun appears from no where

Back to the issue. I was dry. Whether catheter being in only 7 days helped.

Thanks

User

Posted 07 Mar 2017 at 15:14

Thanks for the advice about cranberry juice, last week I got some thinking it would help.
For about 10 months I wasn't convinced of not having caffeine, I guess it has like having a tap full flow and giving it a half turn off, there was no improvement, but now I notice it has a big effect.
Things are improving, the prostate aerobic app is good.

many thanks for all your help, it's difficult to discuss with people.

User

Posted 17 Mar 2017 at 21:01

Hi Richard,

you are not alone my friend, im 22 months post op and still leaking like a chive, done all the exercises nearly an Olympian in them but no joy. No leakage at night or sitting, as soon as im up and about i get that nice warm feeling!!!!

The hospital are talking operation now......not keen. Just keep doing the exercises, you never know they may kick in,

All the best

Johny

User

Posted 17 Mar 2017 at 22:21

Originally Posted by: Online Community Member

No leakage at night

All the best

Johny

I would very much appreciate it if you would read my post which goes into detail about my continence/incontinence which describes why I am continent during the day (whilst I am awake) and not continent during the night (whilst I am asleep) and tell me why (the reason) why you are the opposite? So that I can hopefully learn and understand.

User

Posted 18 Mar 2017 at 11:35

Hi Jonny,
sorry to hear you are still leaking after 22 months, I remember what it was like when my catheter was removed I had no control and it really got me down but after 4 weeks was getting better, I am now 6 months post OP and I am 98% dry just a few small drips and dribbles, I think the Prostate Aerobics APP helped a lot you can download it free if you have a Android phone, As there is so much difference in recovery between each OP I am convinced it is down to the experience of the surgeon and a healthy slice of luck as some men on this site were dry from the start, very lucky if you were one of them, hope you get better soon, try the APP, by the way I don't have caffeine in tea or coffee and like a Bacardi and coke but I have caffeine free Pepsi, don't know if that helps, I hope things improve soon,
best wishes
Paul

User

Posted 19 Mar 2017 at 00:27

Hi Richard,

I,m 18 months post da vinci prostatectomy and i,m still leaking, i was hoping to be ok now as about 6months ago i went from wearing the

bloody awfulwrap round tena thingy,s to a the little v shaped ones you put in the front... alas things didnt get anty better, i,m still only

using about 2 a day which is great i spose listening to a lot of the guys on here but i must admit its been getting me down.

Last week i had my appt with my urologist, ( the one who did the surgery doesnt see me anymore) as my psa has been 00.5 or thereabouts from just after my surgery and YES that is fantastic :) so i,m "remotely monitored" but the waterworks :( anyway my uro seems to think after 18months

there isnt much chance of any improvement... so i.ve studied all the options botox, sacral nerve stimulation et etc and the one that ive

opted for is an advance sling, trouble is as you know its difficult to get anyway opinions on this apart from the ones that come up when you

ask mr google... i p.m,d a guy on here called john aka fireblade who very kindly told me how it was a successful op for him and he was glad he did it, other than that only Tony p seems to know anything about this procedure ... by the way i,m dry at night, always have been

and i,m fine when sitting down, but like someone else who posted leak a fair bit as soon as i stand...

i dont want this op but also dont want to wear pads for the rest of my life.... i,m on the waiting list at a major hosp in Leeds and the dr said

it may be 3/4 months..i,.m hoping for a miracle :) but if i do end up having the op i,ll post my details of surgery, pain, improvement etc on here so anyone else can be informed, ive had some great info from people like Lynn and Bri and many more on this site and am grateful for that :) Anyway all the best mate

User

Posted 19 Mar 2017 at 07:32

Hi Keef

I know exactly what you mean about the leakage getting you down. For me, part of the trouble was being surrounded on this forum by incredibly brave men grinding through radiation and hormone therapies, sometimes still with PSA scores in the hundreds or even thousands. My prostate cancer was just a "blip"; about nine months from diagnosis to removal. My prostate was left in Birmingham and since then, thank goodness, I have been clear of cancer. And yet, here I was making a fuss about incontinence; I kept telling myself that I was lucky to be alive, but still ended up in a fairly dark place. For a while, the sling gave me a lot of hope, but on reflection, my incontinence was just a bit too bad for it and I was too pig headed to realise the fact.

The pain level was pretty low after the sling operation. The worst bit was the wind on the night after the operation, cleared by being able to lie on my left side after all the wires and pipes had been disconnected....

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 19 Mar 2017 at 09:28

Hi, Keef, I've had a look at your profile. I've read that your 4+3=7 Gleason was downgraded to 3+3=6 ?

I'm asking because my husband has just been diagnosed the same. I was afraid that his Gleason could only be upgraded post operation, now I see there is a possibility to be downgraded, isn't there? Or at least, to keep as it was previously?

I'm really scared. He's having this next week bone scan and CAT.

He's never had problems with passing water. Just high PSA, and, incredibly, when diagnosed, lower than before.

He's gping to be operated as soon as his prostate is ready after last biopsy.

I'm sorry that you have been going through incontinence and pain and I wish the best to you.

Lola,

User

Posted 19 Mar 2017 at 11:00

Sorry, but in my previous post above I wrote "Keef" instead of Tony.

Obviously my question was for Tony.

Have all of you a nice Sunday,

Lola.

User

Posted 19 Mar 2017 at 11:16

Hi Lola,

Occasionally the Gleason score is downgraded when the Prostate is examined in the lab but where there is a change it is more often upwards. Either way, I don't think in itself this affects the degree of incontinence, the subject here.

Barry

User

Posted 19 Mar 2017 at 16:29

Hi Lola

The original Gleeson score was from the residue of my TURP operation, the second was after the LRP presumably based on the remainder of the prostate. I think the bad stuff must have been in the centre where the TURP excavated and the not quite so bad stuff was nearer the edge. Hope this helps!

Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 19 Mar 2017 at 16:40

Thanks a lot!!

User

Posted 19 Mar 2017 at 17:15

Keef / Richard

Keef I am assuming your PSA result is a typo and is 0.05 not 00.5. I am now 35 moths post RARP, I was almost dry 4 days after catheter removal which I put down to lots of PFEs both pre op and post op and of course the skill of the surgeon. I was dry for 17 months until a urethral op left me incontinent. I have regained my continence several times since, some I would put down to doing PFEs. I stopped doing PFEs and still regained my continence.

We probably take for granted how complicated going for a wee actually is, there are signals going from the brain to the bladder and visa versa. The sphincter is also a complex organ with voluntary and involuntary muscles. A quick Google on urinating will bring up some informative articles on how things used to work. Daily sildenafil had a beneficial effect on regaining my incontinence, getting a daily dose may not be easy.

Have you considered trying to get the sheath system from your GP or incontinence nurse, it is a life changer? Bladder training has been mentioned and knowing that I was not going to finish up with wet underwear or trousers gave me the confidence to hang on that bit longer. Some urologist do not like the sheath system as they think it makes you lazy, within a few weeks of using the sheath system I regained my continence on more than one occasion. When I got the urge to urinate I would get up and go to the loo stand there and fill the bag so keeping the routine as normal as possible. I took the advice of someone who said "stop thinking about being incontinent", it does help to be in right frame of mind. Of course if the mechanics are no longer working no amount of exercises or training is going to help.

Thanks Chris

Edited by member 19 Mar 2017 at 17:17 | Reason: Not specified

User

Posted 22 Mar 2017 at 10:34

Hi Lyn

Thank you for your advice, I emailed the consultants nurse about me going to an in continence clinic and now have an appointment, 10 May

Richard

User

Posted 22 Mar 2017 at 11:06

I have only been doing the Pelvic Floor Exercises properly for only 7 months, I was given a leaflet with instructions and thought I was doing correctly but wasn't.

I know I'm not alone, my cousins was the same.

someone I talked to who went to a continence clinic before the op ...... this is ideal, make sure you get advice as soon as possible.

This message isn't for the people on this thread, but those diagnosed and waiting for RP

Richard

User

Posted 22 Mar 2017 at 11:49

Hi Richard Can I know - did you have the Robot Assisted Radical P or something else?

User

Posted 22 Mar 2017 at 13:23

Hi Nomad

Yes I had the Da Vinci robot for Radical P.

User

Posted 22 Mar 2017 at 13:26

H Richard, One of the mysteries of all this for me is . . . . . how can you, me, him and the other guy have the same op using the same procedures with massively different outcomes?

User

Posted 22 Mar 2017 at 14:25

You and had the same operation, me a year later than you. I am OK during the day but not at night. I have spent a lot of time on-line looking at how it all fits together and from what I have read it goes something like this . . . we have an internal and an external sphincter that controls the flow. The internal sphincter is involuntary i.e. it is controlled by unconscious neural messages sent to the brain. The external sphincter is voluntary i.e. it is controlled by consciously opening or closing (pelvic floor exercises). Although the 'internal' sphincter is called 'internal' I can't establish if it is actually just inside the bladder or just outside the bladder? During the operation there is damage, the question is how much/what type. Clearly if both sphincters are cut out then there can be no control. I feel (in my body) as though my unconscious control has gone; it seems quite clear that whilst I am awake, I have good conscious control and when I am asleep I have poor/inconsistent control so I suspect that my 'internal sphincter' was cut out / damaged but how can that be if it is internal? I am seeing my surgeon next week and I will be asking him exactly what he cut out/cut through. Have you asked your surgeon these questions?

User

Posted 23 Mar 2017 at 23:10

Hi Nomad, we asked our surgeon exactly this when we saw him yesterday.
My husband's internal sphincter was completely removed along with the prostate. I believe this is normal practice. The external sphincter was then reattached but higher up. So now he only has the conscious action of releasing or holding the flow.
Husband has been virtually dry from day one only one nightime incident after drinking a lot of water before bed so obviously something different to you. Husband also had nerve sparing which consultant said would also have an influence on continence but i know there are others on here with no nerve sparing who have also not had continence issues.

User

Posted 25 Mar 2017 at 13:21

Hi Nomad

My incontinence now gets worse the more active I am, over night the leakage is slight, but going back to the weeks after the catheter was removed I did have a problem at night, I would wake up when I needed to pee,the problem was as I walked to the bathroom I would leak badly so there was not much left when I got to the toilet, it was so bad that I bought a urinal bottle - I was surprised how much I would pass - about a litre a night.

My thought is that over the next few weeks you will get back to normal, it's really early days for you.

On the question of why we have different results ...... most people seem to think it our age and the expertise of the surgeon, the man who did my op was very experienced, one of the first in the country to use the Da Vinci.

It was mentioned that my prostate was quite small, perhaps this made it a more difficult op

I don't really know, my consultant/surgeon said after the op that it went well and I wouldn't have a problem with incontinence.

I'm really stressed these days with anew product launch, perhaps this is the cause.

Richard

User

Posted 04 Apr 2017 at 20:22

Richard

My OH is two years three months post op and has had a tortuous continence journey. He has done everything and a much slower than he expected. He's just got to a level where one level 1 pad will do in a day, and IT IS STILL IMPROVING! (Although it's s bit on hold atm as he's having salvage RT) Don't get disheartened and don't let them tell you it won't improve. It may well do.

The continence issues in his case have a lot to do with the physical nature of his job (he's a farmer). If he does very little, he leaks very little. As the surgeon said- if he had an office job, he'd be very happily continent with the odd dribble. Does this apply to you?

What was intensely distressing to him 12 months ago is easing off. He seems to have stopped worrying about it so much - what will be will be- and this seems to have coincided with improvements. Of course, he has had other things to worry about- a rising psa- so not all fun and games!

Try not to stress - I don't think it helps. It certainly isn't going to make you continent more quickly. See it as a journey.

User

Posted 04 Apr 2017 at 20:23

User

Posted 04 Apr 2017 at 20:56

i think also that it depends on your lifestyle as well as all the other factors like experience of surgeon and so on. i was always a very fit man doing many sit ups each day, and yes at one stage i did have a clearly defined six pack and also used to run marathons.
I was very disciplined after my full RP doing my excercises regularly and although i am fully dry now i still do the excercises at least every other day, especially after having 36 session of radiotherapy.
So i really think that there is no guide lines to this problem post op, we are each individual with different levels of fittness and body strengths.
i was very naughty as i still continued to drink red wine and the occasionaly malt whisky, but i will not drink any carbonated drinks now if they contained any sort of artificial sweetners, as i used to drink Diet Coke like water now i will not touch the stuff, i read up on the artificial sweetners and think they had a lot to do with my prostate cancer, i also now drink tea with no suger ugh dont like it but wont use sugar.
What i am trying to say and very badly is that we are all individuals and all react differently to the way we recover from the surgery, we are all different and have different DNA to aid our recovery dont get dispondant or discouraged by others sufferers stories.
Measure your progress in baby steps, you will get dry and make a full recovery, good luck to you.
Tony

User

Posted 04 Apr 2017 at 21:22

HH & L

I reluctantly start 33 sessions of RT tomorrow, my normal urge incontinence is only a few dribbles but my bladder capacity is normally only about 125 ml and 300ml at an absolute maximum normally overnight, how have you two coped with keeping a full bladder during RT.

Thanks Chris

User

Posted 05 Apr 2017 at 16:28

I had 36 sessions and finished a month ago.

Personally i wore a pad whilst undergoing the Radiotherapy and a quick rush to the loo on completion, but i experimented until I found the best way to take on board water but also be able to hold it in. I had a few close calls, but i timed my water intake down to 25 minutes before the treatment time and also empty my bladder before hand but also drank half a litre of water well before my actual schedule, jsut to make sure i was hydrated.

To be honest during the Radiotherapy session I stopped wearing the pad as i was able to hold my urges until after the treatment finished.

On one occasion there was a delay in my time slot and i had to go to the loo but then drank half a litre of water and 15 mins later I had my treatment with no apparent problems of the bladder not being full enough.

My biggest problems was keeping to the recommended diet which gave me constipation and i also adjusted this to suit being able to empty my bowels before the treatment.

A lot of it is trial and error as we each react differently to the water and the diets that are recommended.

Good luck Chris

Edited by member 05 Apr 2017 at 16:31 | Reason: Not specified

User

Posted 05 Apr 2017 at 19:58

HH

Thanks for the info, they got me on the machine, lined me up then decided to consult the onco about the RT hitting the Catheter port. By the time they had set my up for a second time and done the treatment I was bursting,the advantage of having the Catheter was a quick flick of the tap and instant relief.

Being as i don't like veg, sticking to the diet should be okay.

Thanks Chris

User

Posted 07 Apr 2017 at 21:04

We have two more to go.

OH was fine until a week ago- just tired. He has struggled in the last week with his bowels- the main issue bring urgency, but this is normal apparently. On a more positive note, his continence, which was the bane of his life has improved massively. He's also started having random erections.

Maybe it's coincidence...?

User

Posted 04 Nov 2018 at 20:54

I’m 18 months on now from radical protastectomy and STILL incontinent. My continence hit a plateau after about 6/7 months but has never gotten any better. I’m afraid to stand in pubs or play competitive sports. I get through a minimum of a pad a day.
I’ve had Botox injections into the bladder but so far they’ve made zero difference and I take anti-cholonergics.
I find it have to hold my pee in nearly all the time, or I’ll leak, and even then, I leak upon certain movements.
Frankly, to be 50 and incotinent is pretty soul destroying. It’s become a part of life and I have to be near a toilet at nearly all times.
Physiologically, it feels like there is literally nothing stopping the flow of urine. No sphincter etc
I’m guessing the only option at some point will be the AUS

User

Posted 04 Nov 2018 at 21:05

For your surgeon to say that incontinence wouldn’t be a problem is incredibly misleading. It’s a problem for many many men following RP.

It‘s my opinion that this problem isn’t made any where near clear enough by the health professionals. I too was led to believe it would be a problem for a month or two. 18 months later, and it’s still extremely debilitating.

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