Incontinence remedies

User

Posted 13 Apr 2015 at 16:16

It's 2 years since my radical prostatectomy at Christies in Manchester. They were absolutely brilliant. However, 2 years on I still suffer from some stress incontinence and have been offered the option of an artificial sphincter, rather than the sling.

I would like to be fully continent again as I was before the operation, but am not keen on the idea of having a mechanical sphincter fitted with its bits and bobs to manage.

Has anybody had either of the options (sphincter or sling) and can shed any light on the success or otherwise of having this surgery. It would be greatly appreciated if you could share your experiences to help me make an informed decision. Thanks

User

Posted 14 Apr 2015 at 17:22

'Ello nalb100,

I can't help with any advice re an artificial sphincter or Bulbar Sling etc.......but I'm watching this thread with interest...

I'm 10 months post op and still using on average 2 Abriman Formula 2 pads a day..... ( I do walk across rough ground twice a day with the dogs on a daily basis and this is where most of my leaking occurs )

I recently have had a routine 4 monthly review with my consultant and fortunately my PSA level since my op still remains at <0.01...

I did mention to him that I'm getting a little despondent at times re incontinence despite me doing regular PFE's

He explained to me that for some it can take up to 18 months or even 2 years before continence 'gets as good as it's going to get'

If I can get down to just using 1 pad a day I think I would be happy to 'leave things as they are' as I don't want to take a chance on making things worse...

Hope you can can get a satisfactory solution to your problem..

Best Wishes
Luther

User

Posted 13 Apr 2015 at 16:29

Can't help with your query nialb, just wanted to say hello and welcome to the club.

I am sure there will be somebody with the experience you are enquiring about so hang in there.

Best wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 14 Apr 2015 at 15:29

Hi Nialb. Have a look at my profile. I have a sling but am now being considered for an AUS...

Tony

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

User

Posted 14 Apr 2015 at 15:57

Hi Nialb100,

It's 2 years since my RRP, 02 May 2013, and I still suffer/experience the odd stress leak. Most times I manage to catch it in time as I know the feeling so tense up, in fact I can not recall the last time I actually leaked, but I have had to go to the toilet then.

I am back working at labouring, mixing sand and cement and lifting heavy stuff, I know to tense before exerting so have control, albeit not like it was pre op. It is worse when I am physically tired.

How bad is your stress leakage? Are you able to control it if you tense before exerting? How often in a day, and does it leak or just get beyond first base, so to speak?

Have no experience of the sling or the US but just wondered if there was any more that you could do try to control things?

dave

User

Posted 14 Apr 2015 at 17:13

Hi Colin,

I get a clearer picture of where you are at now with the SI. Fortunately for me I have got a bit more control than that, but jogging or long periods of walking do test me sometimes. Hence not so much jogging, more brisk walking on a treadmill.

Good luck with finding a remedy that suits you.

dave

User

Posted 14 Apr 2015 at 17:54

I was hoping to be able to give some feedback on a consultant's view of an AUS, but was told this morning that his waiting list for consultations was TWELVE months long and I could not be told where I was on that list..... I hope waiting times are better in England!

Colin, apologies for my rather terse reply above. I was still coming down from my conversation with the local urology department. Please feel free to ask for any clarification of my bulbar sling experience, by private message if you prefer.

Tony

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

User

Posted 14 Apr 2015 at 18:20

Hi Nialb100

I do not have any experience of the procedures you mention but I just wanted to say that it looks like our situations otherwise are quite similar.

It is just over 2 years since my op and I am also currently 62.

I found that I had to wear pads for just over a year. To dispense with them was quite a leap of faith in the first instance. I still have odd leaks now and then as others have described but I live with it. I only wear a liner (Morrisons, 28 for £1.85) if I wear a suit or best trousers. Other times I manage without and generally this works well and just for the record I keep myself well washed! I had an uncle years ago who always smelled of urine (bless him) and I am paranoid about ending up the same!

I too would love to get back to pre op days but as long as things do not get worse I am prepared to leave matters alone. I otherwise have a good flow and don't want to do anything to upset this and my view is that I have had enough interference "down there" already.

We are all different of course and if you decide to proceed with the procedures you mention then I wish you the very best.

By the way,welcome to the forum!

Sending best wishes.

User

Posted 14 Jun 2015 at 11:02

Nial, not sure whether you have now made your decision and gone ahead but if not, it might be worth a) reading this and b) contacting the trial?

This is an NHS trial called MASTER to compare the sling v AUS

https://www.mastertrial.co.uk

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

User

Posted 14 Jun 2015 at 15:45

Reference riding a bike above, that was a question I put to my consultant when I saw him recently (he has particular expertise with AUS and sling implants). He said that generally there was not a problem. However exercises like rowing (machine or boat) were not advised for an AUS because the continuous folding of the body in the middle tended to make the pressure reservoir fail. So I guess that would limit a bike to one with straight handlebars, not a road racer, and rule out (phew!) sit-ups.

Tony

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

Show Most Thanked Posts

User

Posted 13 Apr 2015 at 16:29

Can't help with your query nialb, just wanted to say hello and welcome to the club.

I am sure there will be somebody with the experience you are enquiring about so hang in there.

Best wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 14 Apr 2015 at 15:29

Hi Nialb. Have a look at my profile. I have a sling but am now being considered for an AUS...

Tony

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

User

Posted 14 Apr 2015 at 15:57

Hi Nialb100,

I am back working at labouring, mixing sand and cement and lifting heavy stuff, I know to tense before exerting so have control, albeit not like it was pre op. It is worse when I am physically tired.

How bad is your stress leakage? Are you able to control it if you tense before exerting? How often in a day, and does it leak or just get beyond first base, so to speak?

Have no experience of the sling or the US but just wondered if there was any more that you could do try to control things?

dave

User

Posted 14 Apr 2015 at 16:23

I only joined the community yesterday, and am really encouraged by the caring and open responses already. Thanks guys!!

User

Posted 14 Apr 2015 at 17:03

Hi Dave and thanks for your quick response. My stress incontinence causes me to leak a little, infrequently, when I exert or cough etc, and more frequently when I am tired. It isn't normally a problem when I am sitting, only when I am standing or moving around. I can control it to some extent if I tense up in advance of exerting, coughing, sneezing etc! I generally manage on one or two light (Tena level 1) pads a day.

I am almost 62 and retired now, but like to be physically active - jogging, walking, cycling and general working around the house. I find that hill walking causes the most leakage usually when I am on the way back down, when I am tired, so I wear a heavier duty (level 3) pad for that!! I would like to play some golf but have found that hitting the ball in the driving range causes me to leak a bit, so I haven't yet gone out on the course.

I was contacted this morning by Steve, a volunteer, who had the artificial sphincter (AUS) fitted. His incontinence sounded more severe than mine, and the AUS has worked well for him, but he was advised that cycling could cause damage to the device. I would definitely not like to have to give up cycling, so the AUS may not be for me.

Cheers , Colin

User

Posted 14 Apr 2015 at 17:13

Hi Colin,

Good luck with finding a remedy that suits you.

dave

User

Posted 14 Apr 2015 at 17:22

'Ello nalb100,

User

Posted 14 Apr 2015 at 17:54

Tony

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

User

Posted 14 Apr 2015 at 18:20

Hi Nialb100

I do not have any experience of the procedures you mention but I just wanted to say that it looks like our situations otherwise are quite similar.

It is just over 2 years since my op and I am also currently 62.

We are all different of course and if you decide to proceed with the procedures you mention then I wish you the very best.

By the way,welcome to the forum!

Sending best wishes.

User

Posted 08 May 2015 at 20:29

Sorry lads you all sound like you are okay ,
on a good day I can go through 8 pads and 2/3 pairs of pants,
Am I pi €€ed of course I am

User

Posted 28 May 2015 at 07:56

Hi All
Prostate was removed using robot this month and the catheter took out two days ago. I know its early days but standing up results in a constant dribble and I need to change pads every hour to keep dry. However, lying in bed or sitting in a comfortable chair results in very little - it's just the standing up that's the bother. Is this normal?
Cheers Steve

User

Posted 28 May 2015 at 09:09

Normal for you, maybe slow for a lucky few, maybe enviable progress for an unlucky few. Before I offer you the best explanation that I have ever heard about the stage you are at now, do you understand, has it been explained to you the physical aspects of what your parts have gone through, and what they are recovering from?

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 28 May 2015 at 10:56

Originally Posted by: Online Community Member

Hi Steve,

No such thing as 'normal' in this game, as I've found out.

What you have described was pretty much what was happening to me. Your external sphincter muscle and associated pelvic floor muscles are is still very weak at the moment and have taken a bit of a hammering! As a consequence gravity is playing a large part in your inability to control the flow so to speak.
Keep doing your pelvic floor exercises and slowly you will find that things will start to improve

Your rate of improvement and return to continence will be something that is unique to you alone, so try not to get too despondent if you read of others making quicker progress than you are.
Hopefully you will be one of the luckier ones and will become 'dry' after a few weeks / months.
Others ( I'm one ) take longer, but I'm grateful that progress is being made again at long last.

Best Wishes

Luther

User

Posted 14 Jun 2015 at 11:02

Nial, not sure whether you have now made your decision and gone ahead but if not, it might be worth a) reading this and b) contacting the trial?

This is an NHS trial called MASTER to compare the sling v AUS

https://www.mastertrial.co.uk

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

User

Posted 14 Jun 2015 at 15:45

Tony

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

Notification

Join the online community now.