Incontinence 16 Dec 2019 post RARP

User

Posted 05 Feb 2020 at 19:20

Almost 8 week post RP and feeling a lot better and walking around 3 to 4 miles a couple of times a week. Unfortunately there does not appear to be any improvement in the incontinent front. Still using 4 or five maximum pads/ pants daily. I do seem to be dry during the night and whilst sitting and can usually hold it in until I get to the toilet whilst I concentrate. As I am a lot more active now compared to the first 4 weeks this is where the problem lies.

prior to have the operation ,I was a keen walker and also went swimming a couple of times a week.At the moment I feel that I am at the point where when out walking I am restrained as to where I can go. After about an hour I usually need to change the pad. Even when doubling up with a pad inside a pant. The pad requires changing.

I now have an appointment with the Urology department next Monday to discuss using the sheath and convene system whilst walking to give me more freedom. Another point of note is the weight of the outside bin after two week worth of used pads/pants is almost impossible for my wife or I to move it. Luckily we have good neighbours who carry out this task for us. Hopefully using the convene system will reduce this problem.

Just wondering what peoples views of using this system and if anyone has experience of using this any helpful tips,let me know. Thank you.

User

Posted 05 Feb 2020 at 22:11

My local council have given me bags to collect my pants/pads, collection every other week therefore saving space in my black bin.

Conveen sheaths are great, i use them when i need to travel long distances in the car. They would be great for a walker like yourself.

User

Posted 05 Feb 2020 at 22:16

Thanks for the prompt reply. I will give the council a call and ask for the bags and if they can pick them up.

User

Posted 05 Feb 2020 at 23:37

Dave

The sheath system is a life changer, for the better, but use as an aid to recovery not instead of recovery.

Depending on which brand you get they are not without problems and can also leak. Removal of the sheath can be difficult and sometimes uncomfortable.

Hope it helps but it is still early days.

Thanks Chris

User

Posted 06 Feb 2020 at 06:42

Thanks Chris. I appreciate its early days and that it should be used to aid recovery. Hopefully one day I'll recover enough to not need it and just need a small pad for insurance. At the moment I have adopted the attitude that it is a small price to pay for life. Best regards Dave

User

Posted 10 Feb 2020 at 19:15

Just received my Convene system today and was amazed at how easy it was to fit but I now see what you mean Chris about getting the thing off. I couple of issues with unwanted hairs which became quite painful but a quick trim has this sorted. I also noticed it pulling somewhat especially once the bag got to about 50% full due to the weight. Although not painfull it is uncomfortable whilst walking. I was offered two lengths of tube. A short one 30 mm and a long one 100 mm which was by far too long. Just wondering if these are the only two on offer from the NHS. There is another short one on offer which is the same length overall but with a tube slightly longer tube of 35mm. I have both types of short tubes to try them out before I decide which is best for my needs. Has anyone else experienced this pulling on the penis as the bag gets heavy? I have tried tightening the straps but does not help. I believe the problem may lie with wearing the bag below the knee. It's important that I can access the drain valve from the bottom of my trousers so the valve can be operated without removing my trousers. Hope this makes sense. Any ideas would be appreciated.. Best regards Dave

Edited by member 10 Feb 2020 at 19:17 | Reason: Not specified

User

Posted 10 Feb 2020 at 19:39

Just received my Convene system today and was amazed at how easy it was to fit but I now see what you mean Chris about getting the thing off. I couple of other issues with unwanted hairs which became quite painful but a quick trim has this sorted. I also noticed it pulling somewhat especially once the bag got to about 50% full due to the weight. Although not painfull it is uncomfortable whilst walking. I was offered two lengths of tube. A short one 30 mm and a long one 100 mm which was by far too long. Just wondering if these are the only two on offer from the NHS. There is another short one on offer which is the same length overall but with a tube slightly longer tube of 35mm. I have both types of short tubes to try them out before I decide which is best for my needs. Has anyone else experienced this pulling on the penis as the bag gets heavy? I have tried tightening the straps but does not help. I believe the problem may lie with wearing the bag below the knee. It's important that I can access the drain valve from the bottom of my trousers so the valve can be operated without removing the trousers. Hope this makes sense. Any ideas would be appreciated.. Best regards Dave

Edited by member 10 Feb 2020 at 19:41 | Reason: Not specified

User

Posted 10 Feb 2020 at 20:35

Convene supplied me with sample bags of various size and some different tubes and a belt, free of charge and my GP ordered sheaths from a local Pharmacy. I wore a bag on my thigh using the belt provided but found it tended to slip down so I obtained from Conveen one of their designed for purpose elasticated stockings which additionally supported the bag. (These stockings come in different sizes.) There was no pull on my penis as there was slack in the tube before where it was secured. It worked well for the shortish walks but still slipped a little after some distance. I used the system on flights and on a long distance coach where there was an inoperative toilet. It's an unnatural feeling as you are consciously passing urine but one you get used to. Certainly trimming the curlies beforehand is recommended as otherwise these tend to sick to the adhesive coating on the sheaths.

Edited by member 10 Feb 2020 at 20:37 | Reason: Not specified

Barry

User

Posted 10 Feb 2020 at 21:08

Originally Posted by: Online Community Member

I am a bit disappointed to hear that you still get slippage, even when using the elasticated stockings? I have just found out that the straps supplied by NHS are different than the ones supplied by the manufacturer. They don't have the rubber stick stuff inside. Luckily I have some spare bags from when I had my catheter fitted. Hopefully these type of strap will make a difference. Thanks for your input. It's much appreciated.

User

Posted 10 Feb 2020 at 21:18

I was able to cut the tube to the length that suited me, therefore no pulling etc.....

I also emptied the bag when half full or when it was convenient to do so.

User

Posted 10 Feb 2020 at 21:19

Did you also order the conveen adhesive remover, comes in a spray and makes the job so much easier!👍🏻

User

Posted 10 Feb 2020 at 22:29

Originally Posted by: Online Community Member

I was able to cut the tube to the length that suited me, therefore no pulling etc.....

I also emptied the bag when half full or when it was convenient to do so.

Sounds like you were supplied with something totally different. The ones I have been given are a fixed length and sealed at both ends and therefore can, t be cut. I think I will need to contact the company directly and see what's on offer. Thanks for your input.

User

Posted 10 Feb 2020 at 22:30

Originally Posted by: Online Community Member

Did you also order the conveen adhesive remover, comes in a spray and makes the job so much easier!👍🏻

Sounds like just the thing. Cheers.

User

Posted 13 Feb 2020 at 15:50

Originally Posted by: Online Community Member

I was able to cut the tube to the length that suited me, therefore no pulling etc.....

I also emptied the bag when half full or when it was convenient to do so.

I have just had a word with the supplier who Has offered me a bag with a 50 cm tube which you can cut to size, so hoping to get sorted soon. Thanks for letting me know that this can be supplied. cheers

User

Posted 24 Feb 2020 at 07:55

Update 10 weeks post RARP

All sorted now with Conveen system although only wearing it when going out . I can now see light at the end of the tunnel regarding continence. I am about 50% better than when I first came home after having my catheter removed. I am still about 50% fitness wise and sometimes think I have overdone things a couple of times and occationally have pain in my lower groin area but not too bad. .I have started swimming once a week but only a few short lengths.All in all I am fairly happy with my progress.

I had an appointment with my GP regards ED but was informed any help would not be discussed until 12 weeks post op and I should mention this at my follow up with my urologist which is 3 months post op. As yet I have not received a definate date. At the moment I am as dead as a dodo and wonder if I should be using something to at least get the blood flowing again so when I am eventually sufficantly continent I am in someway ready to attempt sex if this makes sense. I have now been told conflicting information who is to actually proscribe anything for ED . Gp says Urology department. Urology nurse is saying GP. Once again I would like to say thanks to everyone on this board for all the help I have received.

User

Posted 24 Feb 2020 at 08:35

Originally Posted by: Online Community Member

Update 10 weeks post RARP

All sorted now with Conveen system although only wearing it when going out

Re the Coveen. Can they be reused if worn but not actually used? I've been caught out a couple of times when flying because the seatbelt sign came on unexpectedly. I thought maybe wear one just in case but use the loo if possible and then reuse the sheath again next time

Cheers

Bill

User

Posted 24 Feb 2020 at 16:53

Originally Posted by: Online Community Member

Update 10 weeks post RARP

All sorted now with Conveen system although only wearing it when going out

Cheers

Bill

I would say No. They come in a sealed container which has a sealed lid. The inside of the sheath has a sticky coating which ensures it sticks to the penis and prevents water leakage. hygiene is very important to prevent infection. Hopefully someone more qualified will be along to confirm this.

Edited by member 24 Feb 2020 at 16:58 | Reason: Not specified

User

Posted 24 Feb 2020 at 17:06

As already said the simple answer is no , not just the hygiene but also impractical to remove and reuse.

There are other systems on the market that do not involve glue. Afex is one system, I did try in but found it uncomfortable and finished up with wet clothes. There are variants of the Afex, just use Google you will find quite a few systems.

Thanks Chris

User

Posted 24 Feb 2020 at 17:20

Good news Dave.

Had same issues with that. It was requested from GP and radio silence. I picked up some online via an online UK pharmacist which checked out. Just followed the profs advice in terms of dosing etc and worked a treat. Obviously check out where you buy it’s from as plenty of genuine looking websites aren’t quite what they seem to be selling pixie dust. I didn’t need a formal prescription as that was done online once I had justified use.

User

Posted 24 Feb 2020 at 19:24

Cheers Tech guy are we talking about viagra or similar. Any problems get an appointment with ED clinic? Think I need a pump as well. I Tried viagra 1/2 a tablet and nothing but a bad headache the next day.

User

Posted 24 Feb 2020 at 20:28

Tadalafil 5mg daily seems optimal for me. I also take it twice as 2.5mg every 12hrs. Not needed them so much lately but have them on standby now if a bit tired and her ladyship isn’t.

viagara was fine too but I felt they made me flush in the face. Tadalafil low dose seems more gentle.

User

Posted 24 Feb 2020 at 20:51

Originally Posted by: Online Community Member

Tadalafil 5mg daily seems optimal for me. I also take it twice as 2.5mg every 12hrs. Not needed them so much lately but have them on standby now if a bit tired and her ladyship isn’t.

viagara was fine too but I felt they made me flush in the face. Tadalafil low dose seems more gentle.

Thanks for your valued imput

User

Posted 11 Mar 2020 at 17:41

Just managed to get sorted with Holiday insurance with my bank. Having used them for a good few years and they have covered me for the USA and no exemptions and no additional cost. My question is regarding the Conveen system and if there are any issues due to decompression? Hopefully this Corona Virus is sorted by then (Xmas) and we can actually fly.

Edited by member 11 Mar 2020 at 17:43 | Reason: Not specified

User

Posted 11 Mar 2020 at 18:20

Dave

I have a SPC and catheter bag , I had some hyperbaric oxygen treatment equivalent to a depth 33ft for and hour and never had any issues.

Thanks Chris

User

Posted 12 Mar 2020 at 07:34

Cheers for your reply and think you are propably correct. However It is the sheath itself I am worried about. When emptying the bag this causes a vacuum within the sheath and is quite uncomfortable.But only for a short while. I just wonder what the effects of decompression and not compression would have on the sheath. Sorry if I have this wrong and perhaps I need to take this up with the manufacturer of the conveen system and thank you once again Chris.

Edited by member 12 Mar 2020 at 07:36 | Reason: Not specified

User

Posted 12 Mar 2020 at 17:17

Dave

Have you tried only part opening the tap to reduce the flow or pinch the spout of the conveen whilst opening the drain tap.

Thanks Chris

User

Posted 12 Mar 2020 at 19:30

Pinching the end of the sheath might work and will give it a go. Unfortunately whilst out walking I have not always got access. The valve on the bottom is a the push button type and is either open or closed. When I do have access when emptying the easiest way to equalize the pressure is to disconect the sheath from the tube for a few seconds. I am not sure how practical this will be when flying but definitely worth a try. I do think this procedure might insrease the risk of infection but worth the risk if I always wash my hands before.Thanks again Chris for your valued input.

Edited by member 12 Mar 2020 at 19:31 | Reason: Not specified

User

Posted 14 Apr 2020 at 17:11

Hi all,

I used the Conveen sheath and found it changed my life! Able to go out without worrying about leaks and with a sports bag stuck to my thigh. It needed emptying often. Then I went for my 6 week checkup with the surgeon. He was horrified that I was using the sheath and told me to stop immediately. The reason being that it does not encourage you to recover the use of the necessary muscles. The following weeks were a trial, back to pads and 4/5 a day.

I had done pelvic floor exercises from 4 months before the op. on instructions from the surgeon and continue today. I use the Squeezy app on my phone to remind me to do them 4 times a day. You can adjust the regime to suit you.

The breakthrough came at about 12 weeks post op. Suddenly continence dramatically improved. I put this down to not only the excercises but to more probably the nerves growing back. Immediately down to 1 to 2 pads a day. Improvement followed and now 10 months post op. no pads and no leaks and back to boxers!

I walk c. 5km a day which also involves a hill or two which I jog down. At 75 and bad knees jogging is not easy but downhill worked for me. I had read somewhere about a fellow who said it helped him. Painfull to start with (knees) but got better, a few leaks to start with but it does encourage you to tense the muscles.

Edited by member 14 Apr 2020 at 17:11 | Reason: Not specified

User

Posted 18 Apr 2020 at 13:29

Hi all

I have just posted a practical solution to managing longer term mild to moderate stress incontinence with a sheath and modified thigh bag. It has completely resolved a couple of issues I had with the normal sheath / leg bag solution. This post should appear shortly once moderated. Sincerely hope it helps. 😀

User

Posted 07 May 2020 at 09:08

Just an update after almost 5 months post RARP. No longer using the sheath unless out all day which at the moment isn't, happening and only using a couple of pads per day. Some days only 1and not saturated at the end of the day. I could probably get away with using smaller pads but as they are still for free. If progress continues perhaps I might be totally continent in another couple of month. Thought I might post this for anyone who has a similar experience of being totally incontinent after catheter removal and now light at the end of the tunnel. Hope this helps.

Edited by member 07 May 2020 at 11:24 | Reason: Not specified

User

Posted 10 May 2020 at 14:45

Just wanted to post a message of reassurance to those struggling with incontinence after RP. Despite doing everything I was told to do after surgery, I made virtually no progress for eight weeks. I was becoming quite despondent and convinced that I would be the exceptional person who never recovered their continence. However my physiotherapist kept my motivation up and in week 11 there was a dramatic improvement from 4/5 pads a day to one. Yesterday after 13 weeks I stopped wearing a pad (though I feel I may need to have a back up once I get of social isolation!)

I don't know why it happened like this for me. Probably it was just building the pelvic floor muscles - I do remember suddenly becoming "aware" of these muscles or maybe something triggered my muscle memory (if there is such a thing). Anyway, the point is, it has worked for me and there is a very high probability that it will work for you, sooner or later!

Best wishes

User

Posted 10 May 2020 at 14:53

Uncle Pedro that is great news!

I'm just over 7 months RP and still using 2/3 light pads a day, hope my day will come soon. 🤞🏻🤞🏻🤞🏻

User

Posted 19 Jun 2020 at 07:05

Just like to add what has been said before after being totally incontinent .I am now 6 months post op and am just about totally continent. Apart from the odd little accident when doing something streuous my daily pad is usually dry. After wearing pads for so long it now trying to gain the confidance to not wear any at all. I think I will start with during the night as I have always been dry in the morning ever since the operation. I am due another follow up next month and another PSA. Hopefully I will get to see the surgeon this time as the last follow up was just after lock down and I did not do a face to face interview but just over the phone. Good luck everyone and I hope anyone who has been similar to me does not get too disheartened when having to use lots of pads and sheaths etc weeks after their operation.

Edited by member 19 Jun 2020 at 07:08 | Reason: Not specified

User

Posted 19 Jun 2020 at 11:22

Fantastic news Dave, and fingers crossed you keep making progress.

Kev.

User

Posted 20 Jun 2020 at 09:04

Originally Posted by: Online Community Member

Fantastic news Dave, and fingers crossed you keep making progress.

Kev.

Thanks Kev, good luck and stay safe

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