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Incontinence 8 week post op

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User

Posted 21 Jul 2015 at 14:16

Hi all,

i am week 8 post op and still peeing like the river Nile, im doing the exercises as instructed, no effect as of yet.

Im getting inpatient , nothing seams to be happening with regard to control, slowing or stopping. Should i be looking out for a feeling or does it just happen slowly of its own accorded.

Or should i just shut up and sit tight as its early days?

Johny

User

Posted 21 Jul 2015 at 16:06

Hi Johny

I went to GP and was given Oxybutynin which relaxes the bladder

What a difference this has made to me

hope this helps

Gary N

User

Posted 21 Jul 2015 at 18:49

Hi All

Has anyone on this forum been involved or enrolled on the Master Trial? Details are available with the following link:

https://www.mastertrial.co.uk

If so what are your thoughts or conclusions.

I had a Dynamic Video Test of my urinary system on 24 March 2015, to check the reason for my incontinence following removal of my prostate gland on 12 December 2012. Followed by an endoscopic internal examination of my urethra and bladder to check for scar tissue or a stricture on 9 June 2015. I am now waiting a further consultation with the consultant urologist running the Master Trial to discuss the next stage including the possibility of my being involved in the trial.

abprops

User

Posted 23 Jul 2015 at 07:52

Hi Jonny I struggled at first with my control , I decided that I would walk every day about 5 miles to work my pelvic area , did come home with pad full and having to change shower straight away but slowly it got better and better, could have been coincidently but I think it was this that got my control back . all the best Andy

Edited by member 23 Jul 2015 at 07:52 | Reason: Not specified

User

Posted 08 Aug 2015 at 21:18

Hi Jonny

My OH is 8 months post op. He has had a similar experience to you. At 8 weeks post op he was about where you are both leaking wise and emotionally.

He is still leaking, but nowhere near as bad. In fact, if he did as he was told, he'd probably be further on but he's a stubborn git!

Are you leaking when you lie down?

User

Posted 20 Oct 2015 at 22:14

Johnny

I know it seems like it (been there, done it, got the T shirt), but the fortunate ones who are dry shortly after prostatectomy are not aiming their comments directly at you to make you feel inadequate. It just feels like that... You have signs of continuing sphincter control and that is good. Nerves take time to recover and heal, and they have taken a bit of a battering. Continence post-operation seems to be an individual thing with very little rhyme or reason. I know it is difficult, but try to give it time.

In the unlikely event (and I do mean unlikely) of continuing incontinence, a number of strategies exist to make life as normal as possible (see my profile). Please don't hesitate to send me a personal message if you have issues or concerns you would rather not discuss in the open forum.

Be strong.

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

User

Posted 24 Nov 2015 at 18:59

Hi Johny

Sorry to hear about your incontinence issues.

It was just over 1 year before I felt I could do without a pad. Dispensing with a pad at first was quite a leap of faith. However, I still wore a pad if I was wearing a suit or best trousers, but just to be safe.

I am now almost 3 years post op and reckon I am about 95% continent, maybe be a little better. I still wear a thin liner only if I wear a suit and other times I manage without. I still have odd leaks now and then but I live with it. My flow is otherwise very good and I am reluctant to do anything to jeopardise this. I would much prefer a leak rather than retention - that is one of my worst nightmares.

I only wear a liner with a suit because a suit is more hassle taking to dry cleaners but trousers can easily be washed.

I am quite paranoid about smelling of urine so I keep myself well showered.

Looking back I thought the day would never arrive that I would be dry but it did very gradually. I think it varies from man to man - some are dry quickly and some take longer.

I do have a suggestion when you feel the time is right - wear your oldest trousers, dispense with a pad and on a day you don't have anywhere special to go and see how you get on. Sometimes it is just a matter of confidence but if you do slip up old trousers won't matter and you will be at home to wash etc..

Having been where you are now I know exactly how you are feeling. However, don't give up! It will get better.

Edited to correct grammar!

Wishing you all the best.

Edited by member 26 Nov 2015 at 21:38 | Reason: Not specified

User

Posted 24 Nov 2015 at 20:36

Hi Johny,

six months is still really, and as Tony says there is no magic arbitrary date by which time you will be dry, sadly. As is said many time here all men have the stem disc bits in the same general area and at op there are disturbed in broadly speaking the same fashion with the result that no two men ever seem to have the same recovery rate. It is cruel but true.

If it helps put your mind at ease, my dry enough and confident to abandon pads at all was at about 9 months I believe, it was a while ago. Prior to this my attitude to the whole issue was individual and non-conformist apparently. PFEs did nothing for me, except tire me out so I stopped doing them pretty soon. Now I do not know had I continued doing them or restarted them that they may suddenly have dried me yup a lot quicker, but I stopped. In an evening after a day with 1 or 2 or 3 or even 4 pads as it was early on I would abandon pads in the evening and bag up. By "bag up" I mean put a Conveen sheath on and wear my leg bag or night bag. Then I would abandon trying to stay dry and just relax with beer or whatever. It meant that for the evening I could relax and not worry about that particular issue.

I kept a blog of my life during those months, not even sure of it still available here, or even if it was under this username? If you want a read I will send you a copy.

Not sure how much you are leaking or when, are you dry at night? Is it stress leakage during the day when exerting, or when physically tired or run down?

Getting your head and mindset around to accepting that for the time being this is your life, your new norm, will help reduce the anxiety. And may help the healing process. Sadly, some men never get "better" in that department.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 25 Nov 2015 at 16:07

Hi Johny,so sorry to hear of your continued continence problems,its only when i read stories like yours that stops me feeling sorry for myself after 5 weeks post op.I truly believe there is no finite time to regaining full control as everyone is different in age,or body makeup& recovery capacity i feel also its down to how successfull the attatchment to the bladder neck is.I had my first blood test today since my operation&go to see the surgeon next Thursday for results.Ive already self referred myself to an incontinence clinic&await a reply for an appointment.Thats all before we get to the ED stuff.Try to stay posetive,hope thats not too much of a cliche,although it may seem theres very little light in the tunnel yet,&please keep me up to date on your progress.

Best Wishes

Polarbear2.

User

Posted 26 Nov 2015 at 18:33

Hi Johnny

OH is just coming up to his 12 month anniversary (dec1st). He is not continent, but how much of a problem this is depends on what he does in the day.

He has a physical job (farming) and if he does too much he leaks more. He's on two pads a day, one of which is relatively dry. Some days if he doesn't do much he manages with one.

I think he's become resigned to it

User

Posted 06 Jan 2016 at 17:16

I'm so sorry Johny
I have been wondering how you're getting on , and 3 pads a day is obviously disheartening for you. I really do think it's luck of the draw and surgeon skill / experience / technique. Much is probably the same for nerve sparing and recovery. There are many people stuck with post-op incontinence like yourself who will help you I'm sure.
Best wishes
Chris

User

Posted 08 Jan 2016 at 21:59

Hi Johnny

Sadly, you appear to be taking a similar path to my OH. I really do believe it's just the luck of the draw.

At 7 months post op, I think the oh was around the same. He said that he'd go a few weeks where there was no improvement, then suddenly he would take a leap forwards. At 13 months post op, he's now mostly on one pad a day. He has two physical jobs (farmer and marquee company), and this doesn't help. I keep nagging him to get other people to do the rough stuff, but...
Over Xmas, while he was doing the bare minimum, he had three completely dry days. Now he's back at work, he's leaking a bit again.

I completely disagree with the three months bit. Load of tosh.

I remember my oh having a bit of a melt down around your stage post op. He was despairing of everything, and spent a week drinking a fair bit. Which did not help in the slightest!

So here is my advice for what it's worth. And please don't shout me down everyone, I'm only writing down how I managed to get through it.
Try and change your mind set. Look on it as a journey. As long as there is some improvement to date, it will probably continue to get better. It's just going to take longer. Think of it as the rent you have to pay for being one of the ones with operable cancer. You don't mention ed. if that's an issue, don't put off trying to fix it until the continence is sorted. This is what my oh did. We've recently used injections with success, and should have done it sooner. It's changed his perspective on the incontinence.

I hope this helps.
Louise x

User

Posted 09 Jan 2016 at 14:55

Hi all.

thanks for the reply's, i really do appreciate the support, guess im a bit fed up at the moment, bit frustrated to.

The incontinence is a b**** for sure but i get on with life so to speak, its just taking so long.

Erectile dysfunction is another thing altogether, iv been given 50mg Viagra 3 times a week, not sure what the score is with it results wise, are the effects gradual? i will start another post with ref to this as i have some specific questions for members.

And my Lymphodema continues to plague me around the op site, i had 26 nodes removed but fluid continues to gather, at times it can be rather uncomfortable.

Hey oh , im still here that is the main thing.

Johny

User

Posted 09 Jan 2016 at 14:59

Johny , you're a hero mate truly
I feel sorry for myself but you are coping with ED , incontinence and Lympho all together . I admire you mate and your attitude , and know what you are going through as a whole family . Keep strong brother and talk anytime . Ask anything
Chris

User

Posted 09 Jan 2016 at 22:23

Johny
you certainly are having a rough time with it all. The questions you want to ask can and will all be answered. I am amazed constantly about the open and honest sharing of the most intimate things on here all in the interest of helping each other.

xx
Mo

User

Posted 03 Jun 2016 at 14:19

My experience may not be typical, but I reached my plateau at about six months, on at least three pads per day.

Obviously the next step is entirely up to you and your medical team, but having undergone both operations, I can report that they were no big deal when compared with the original prostatectomy. Try not to let the leakage get to you; I did and ended up in a pretty dark place - not much fun for the rest of my family.

My AUS, while not perfect, continues to work extremely well (now six months on from activation).

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

User

Posted 03 Jun 2016 at 14:40

J

Why not try the sheath system for three months to see if it has any benefit. My Second bout of incontinence was not a direct result of the RARPbut, perhaps just coincidence but with the sheath system I went from 200 mls a day to about 5 mls. I also stopped doing PFEs and perhaps again coincidence but my incontinence improved.

Thanks Chris

Show Most Thanked Posts

User

Posted 21 Jul 2015 at 14:50

Hi again Johny
Many on here will know far better than I , as I'm only 5 wks post-op. I think it's very normal to have a sizeable level of incontinence at this time. If you read through many posts , men are still incontinent at 7 months. You are surely getting full follow up with ED and incontinence ?
I was told to do the PFE's forever now if I want to stay continent. I was told to do them with the catheter in religiously , and I'm virtually dry at 5 wks. Many men on here were told NOT to do them with it in , so there is some debate here.
Anyway mate soldier on with them and read the booklet on this site on how to do them properly if you haven't already
Chris

User

Posted 21 Jul 2015 at 15:10

Hi Johny,

It's still very early days for you at 8 weeks post op.....

For some, control returns quickly ( the lucky ones http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif ) .......for others ( like me ) it can take longer ( months ) .... speed of return to continence is dependant on a number of factors and even the surgeon will not be able to tell you when that will happen....

It's understandable that you become a little impatient but it won't alter things I'm afraid. ( I know, I've been there http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif )

Keep doing your PFE's as instructed as it can take quite a few months for the benefits to kick in... It's important to get those muscles as strong as you possibly can but not to 'overcook' the exercises.

I was leaking like a sieve at 8 weeks post op and thought things would never improve. Although I haven't managed to regain full continence yet, when I look back to where I was a year ago things have improved greatly for me.

Recovery is unique to each individual, but normally improvement will be gradual over a period of time.

Keep yer chin up....things will improve

Best wishes
Luther

Edited by member 21 Jul 2015 at 16:17 | Reason: Not specified

User

Posted 21 Jul 2015 at 16:06

Hi Johny

I went to GP and was given Oxybutynin which relaxes the bladder

What a difference this has made to me

hope this helps

Gary N

User

Posted 21 Jul 2015 at 18:49

Hi All

Has anyone on this forum been involved or enrolled on the Master Trial? Details are available with the following link:

https://www.mastertrial.co.uk

If so what are your thoughts or conclusions.

abprops

User

Posted 23 Jul 2015 at 07:52

Edited by member 23 Jul 2015 at 07:52 | Reason: Not specified

User

Posted 08 Aug 2015 at 21:18

User

Posted 09 Aug 2015 at 06:29

Hi Louise,

No leaks when lay down.

Managed to get into the incontinance clinic this week for some advice, even at week 10 the swelling from the surgery can cause issues with leakage so iv been told, I'm just going to keep on with the excercise and hopefully it will come right.

Johny

User

Posted 09 Aug 2015 at 22:38

Hi Jonny,

Someone on here - probably Lyn- told me that if my OH was dry at night then it was more than likely just a matter of time. So be prepared for the long haul, but hold on to that thought. And if it clears up quickly, even better.

L x

User

Posted 10 Aug 2015 at 21:40

Originally Posted by: Online Community Member

Hi all,

i am week 8 post op and still peeing like the river Nile, im doing the exercises as instructed, no effect as of yet. It IS Still early days for you.

Im getting inpatient Understandable, but a wasted emotion. No apologies if blunt.* I have been there with the still needing a pad at 7 months, and overcoming the emotional aspect was the best thing I did, it banished the frustration and helped me deal with the depression. , nothing seams to be happening with regard to control, slowing or stopping. Are you sure? Are you keeping a record of how much you leak and how often? Small gains will or may creep up on you and if you have no record to refer to, it you may be making small advances without knowing it? Should i be looking out for a feeling or does it just happen slowly of its own accorded. It is different for each man.

Or should i just shut up NO, definitely not! and sit tight as its early days?

Johny

* well slight apologies but it needs saying and I mean it to help you.

Jonny, Be a patient patient, try not to let impatience get the better of you. It does no good.

Some men are dry as soon as the catheter is removed, others take longer. Maybe age is a factor? The issue of the urethra and it having to reacclimatise to a new "shut" was explained to me by a very good lady friend of mine some while ago. For years since as a kiddy you were dry the urethar clamped down on itself and shut off the valve and you ere in control. Then, a tube is shoved up it and your urethra can no longer get to clamp down on itself, but adjusts to a new down as far as it can, on the tube, and thinks that is sufficient. Then the tube is removed and the bladder has to learn a new shut position, where it used to be, and that can take time, took me over 7 months. Takes others a lot less, some a lot more, some never recover control.

PFE - are you doing them correctly? I was doing them correctly apparently, did me no ydoolb good at all. All they did was wear me out and I was always knackered. So I stopped doing them. Still made it to dry around 7 months post op, well the odd squirtle, but I am happy enough as I am now 2 years 4 months down the line, dry with the odd surprise squirtle if I catch my head on a bar at the gym or trip up, or aroised and upright but it's less than a teaspoon and my wife understands and is fine and does not make a fuss, but carries on. Making the supper or doing the painting.

Your recovery will be unique to you, and how you manage it may depend on how far you are prepared to think outside of the medical professional advice box?

PFEs - did not work for me so I stopped doing them. Outside of the box, but I was not so tired, and miserable, and I still recovered.

Trying to keep dry during the day, felt like almost doing a permanent sit up, gave up on that in the evenings and would put a conveen on with a leg bag. This meant in the evening I could, relax, and pee at will. Have you considered that option? You may be beyond that need by now?

Do you know the anatomy of your surgery, where the urethra meet your bladder, how the cuts were done, what shape? How the muscle could be affected?

Night time, dryness is mostly likely due to gravity, or lack of gravity carting on your bladder. Is it dry when you are on your prone on your front?

The likelihood is that in time you will get dry and regain control, you need to wait for that time.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 19 Oct 2015 at 18:33

Hi all,

Coming up on 5 months post op and still leaking, doing the exercises day in day out and no joy.

Joined a local gym, taking it easy as still have lymphodema .

Swimming has been recommended for help with incontinence. i will give it a go but to be honest i think il just be adding to the level of the water.

Any ideas on exercise that may help in addition to kegal ones?

Johny

User

Posted 19 Oct 2015 at 20:09

Hi Johny,

Has there been ANY improvement in your leakage rate, do you know or think?

Have you been measuring how much goes into each pad over a fixed period of time to see if there is less day by day or hour by hour?

Are you dry at night?

FWIW the exercises do not work for everyone, did not work for me, my body recovered control at it's own rate, it did take me longer than average though, and is disheartening.

If you are not measuring the leak rate then consider doing so, there may be gradual improvements that because they are gradual are creeping up on you without you knowing?

Can your GP advise or offer more support?

Don't lose hope, there is still time to inprove.

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 20 Oct 2015 at 18:06

Hi Dave,

im still filling the pads regular if im up and about, it just seeps out, its about the same as it always is.

If i sit upright my bladder fills and tells me i need the loo, i can hang on to most of it before i get there so in that respect i suppose you could call that and improvement.

I am in general dry at night, although i do have the odd squirt as im turning over.

The GP is pretty useless to be honest, it was a struggle to get referred to the incontinence nurse, but at the moment all she is saying is give it time, still i cant complain she has ordered me a load of pads to be getting on with.

Im fine with it all, but when i see some people are dry after 7 weeks it just makes me wonder.

Johny

User

Posted 20 Oct 2015 at 22:14

Johnny

Be strong.

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

User

Posted 20 Oct 2015 at 23:27

Johny, are you on water tablets for the lymphodema? That could be making it harder to regain full bladder control perhaps?

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

User

Posted 21 Oct 2015 at 11:54

There isnt a one size fits all, everyones recovery time is different, I remember feeling fustrated when I was 3-6-9-12 months post PR

I'm now 18 months on and still leaking but not as 6 months ago, there 's been a big improvement, the pelvic exercises have never worked for me but they tell me I'm a bog standard recovery case....hope there right !

User

Posted 26 Oct 2015 at 22:45

Hi Johnny

We were recommended swimming at about your stage. The OH did this for three months (he's a crap swimmer), and said it was fabulous. As soon as he got into the water, the leaking stopped. Which was fortunate for everyone else.

The OH is 11 months post op. Pfe dont seem to have worked for him either. I think he may have given up on them. He says not, but I think he's fibbing. He's a farmer, and heavy work is the norm. He uses two or three level 2 pads a day. Last week, we went away for a week. He used one a day, and that was barely wet. Back this week, and back to two pads.

I think he is slowly coming to terms with the fact that he's always going to have some level of incontinence if he carries on at his present level of physical work. But he can't deny that, although VERY slowly, especially for someone as impatient as him, it is improving.

Maybe you should keep a diary, count pads, devise a wetness scale. You might see it getting better.
Louise

User

Posted 27 Oct 2015 at 09:22

Originally Posted by: Online Community Member

Hi all,

Coming up on 5 months post op and still leaking, doing the exercises day in day out and no joy.

Joined a local gym, taking it easy as still have lymphodema .

Swimming has been recommended for help with incontinence. i will give it a go but to be honest i think il just be adding to the level of the water.

Any ideas on exercise that may help in addition to kegal ones?

Johny

[Hey Johny,

I don't know if this is coincidence or not, but re swimming, I've swum (front crawl only) 2.5kms most mornings for the past 7 years. I've had no incontinence issues whatsoever. Maybe I'm lucky, but worth a try??

User

Posted 27 Oct 2015 at 10:51

Before giving up on PFEs, I tried a TENS machine ( mine was one of the Pelvitone ones ). The idea is that it uses a programmable sequence of small electric shocks to supplement the muscle contraction. They can be quite expensive to buy - mine was £80 or so I think - but they may be able to be borrowed from a hospital or medical centre physiotherapy department. The downside for helping PFEs in a man is that you need to use an anal electrode and lots of KY jelly, not the nicest of experiences.

To cut down on pad use, also I tried a thing called a "DribbleStop" (available from Amazon). It has to be used with caution so as not to interfere with the penile blood supply, has to be kept clean and released regularly to avoid promoting urine infections and possible kidney problems. Like the TENS machine, it is not a particularly nice appliance to use, partly because of its resemblance to a kitchen clippit. DribbleStops are expensive (£50 or so for two of them) but the cost is offset against reduced pad bills if you have to pay for them.

I tried the TENS machine for about six months, noting pad volumes against levels of activity (sorry, I was an IT consultant so it was all on spreadsheet tables and graphs..), but there was still no improvement so I gave up and instead went down the path of mechanical assistance. See my separate entry on male slings and artificial sphincters.

Artificial Sphincter Diary

Don't give up! With care, life after prostatectomy can be very near normal.

Edited by member 27 Oct 2015 at 11:04 | Reason: Not specified

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

User

Posted 27 Oct 2015 at 11:45

Also, I haven't seen them mentioned on here recently but some men on the forum have found conveen sheaths to be really useful.

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

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