I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Christmas Day Incontinence

User
Posted 29 December 2014 10:22:22(UTC)

Over 24 hours, I normally don't even half fill a pad.  However, Christmas Day I cooked for 11, and was on the go for virtually all of it.  After 12 hours, the pad was full and needed changing, so clearly still some way to go before I become fully continent.  

It's still brilliant having all the family around.  Wouldn't swap it for anything!

Stay Calm And Carry On.
User
Posted 29 December 2014 14:10:58(UTC)

What a great attitude sixfoot.
Glad you had a great Christmas with family.
You were brave cooking for 11 !

We can't control the winds - but we can adjust our sails
User
Posted 29 December 2014 14:51:29(UTC)
Hi Sixfoottwo

Bearing in mind all the hard work you did on Christmas day it is no wonder you had a filled pad! At least you had a wonderful day and a wet pad was worth it.

Wishing you a great 2015!
User
Posted 29 December 2014 15:38:28(UTC)

Originally Posted by: Online Community Member

Over 24 hours, I normally don't even half fill a pad.  However, Christmas Day I cooked for 11, and was on the go for virtually all of it.  After 12 hours, the pad was full and needed changing, so clearly still some way to go before I become fully continent.  

It's still brilliant having all the family around.  Wouldn't swap it for anything!

 

Not a normal day for you, therefore no worry about apparently taking moving backwards in your control and recovery.

I can only speak from experience so I hope that this will help you, but as you get more tired your control will need to be more often "thought of".  You probably go through most days not even thinking or worrying about control?  And you probably go through the day with bouts of being seated, and standing up and moving about?  All of which exercises and flexes the muscles.  A day of standing up with the constant gravity will probably induce leaks. 

A day on my feet is more likely to get me leaking, and when I am really tired, leaking unless I catch the first pulse of the urethra and can stop the second pulse occurring and get to a loo.  

Glad you had a good time SF2.  All in all you are doing really well with many aspects of your recovery at this time. ;-)

ATB

Dave

User
Posted 20 February 2015 13:26:50(UTC)

The situation now is getting slightly frustrating as after getting down to not needing 1 full pad per day, there seems to have been no significant improvement in the last 2 months. I do my PVEs once per day, and I can tell the muscle is strong as I can hold it in for a considerable time, a slow count to 50, if I want.

Can I expect ever to get dry, or is this as good as it gets? I felt I could live like this forever, but it's just beginning to get me down. Still, I am alive and well, and very grateful for that!

Stay Calm And Carry On.
User
Posted 20 February 2015 13:51:27(UTC)

Originally Posted by: Online Community Member

The situation now is getting slightly frustrating as after getting down to not needing 1 full pad per day, there seems to have been no significant improvement in the last 2 months. I do my PVEs once per day, and I can tell the muscle is strong as I can hold it in for a considerable time, a slow count to 50, if I want.

Can I expect ever to get dry, or is this as good as it gets? I felt I could live like this forever, but it's just beginning to get me down. Still, I am alive and well, and very grateful for that!

 



Hi 6F2,

I think I may be a couple months behind you in terms of Op date etc.... ( mine was June 12th 2014 ) 
I made a significant improvement  just before Christmas ( using 2 pads per day on average )

Like you, these last 2 months I seem to have come to a standstill with no further improvement at all....


I do my PFE's daily and I have been told that my muscles are strong, so I can only assume that my external sphincter muscle has not yet  fully recovered, or maybe  it was necessary to remove part of that muscle in order to ensure the PCa was completely removed? 

Doing some research on Dr Google I've found that some medics say that it can take 12 to 18 months before full continence returns for some people.

It does get me down at times  not making the progress I had hoped for, but I shall keep plugging away in the hope that things will improve in the future.
As long as my PSA stays at <0.01 I will be happy..

Best Wishes 
Luther

User
Posted 20 February 2015 15:05:33(UTC)

I'm at Christie's on Wednesday for my next review. I'm exactly with you, Luther, on the PSA score - touch wood, I've not suffered from PSA anxiety yet. I can live with the slight inconvenience at the moment, but it would be nice to know things can keep improving.

Paul

Stay Calm And Carry On.
User
Posted 21 February 2015 11:24:35(UTC)

It will improve. Mine did in the space of a couple of days. I just suddenly realised that the pad simply didn't get wet/stained over a whole day, same next day and the next so I simply stopped using them.

 

Steve

User
Posted 23 February 2015 15:33:23(UTC)

Well of course, after posting that things seemed to be getting worse, a sudden improvement where for the last few days, leaks have significantly declined. Still some way from not needing a pad, but feeling much more encouraged.

Stay Calm And Carry On.
User
Posted 23 February 2015 15:58:37(UTC)

Good news then sixfoottwo, well done. I to suddenly found that I didn't need the pads over the space of a couple of days, just suddenly seemed to stop. Whilst I can go most of the night with only one or two visits to the bathroom, the daytime is still every hour and a half, two hours tops depending on how much I have to drink. I'm also ok so long as I can get to the loo within a short space of time.

Still waiting for an invite back for the three month PSA test and post op consultation, hopefully not too long though.

Keep up the good work, perseverance undoubtedly will pay off.

User
Posted 23 February 2015 19:59:58(UTC)

I don't get up in the night more than I do. I would say I'm peeing better than I did pre op, and going with about the same frequency. I still consider myself lucky in comparison to most on hear. There are some very harrowing stories, which make me so grateful I was diagnosed early.

Paul

Stay Calm And Carry On.
User
Posted 16 March 2015 20:29:34(UTC)
Hi Sixfoottwo,
Like you, I am still in the frustrated camp. I had my op on March 1st 2014, now just a year past and I am still wearing one pad per day. I don't wear one during the night and have never done so since a week or so after catheter removal. The daily pads have reduced from five to three to two, and I have been using only one for some time now. Just a couple of days of hardly any mark, then next day results in more leakage.
I am fine when sitting down and I mainly get leakage after standing a lot and particularly late in the day and evening.
Usually I can prevent a leak when I cough or sneeze, unless it catches me by surprise. I have started weighing a wrapped up used pad and find it varies between 4 and 20 grammes more than an unused pad, indicating, I think, a leakage of anything between 4 and 20 ml per day. I usually do my PFE in the morning while walking for a paper and find that they actually cause some leakage when tensioning/relaxing the muscle as the urethra is being squeazed/relaxed, a sort of syphon/pump action I guess.
Like you I hope it clears up soon.
My PSA has never been undetectable unfortunately. The last one in December was 0.16 and has risen from its nadir of 0.107 in June.
Consultant is monitoring every 4 months with a view to salvage RT if it gets to 0.2. I hope to be completely dry before that though, as I understand the RT can cause a stricture (whatever that is) and I could need to wear a pad permanently.

User
Posted 16 March 2015 21:40:40(UTC)

I have become less frustrated over the last month and am now just counting my blessings. A golfer aged 6 months older than I died on the course last month, and on Saturday, a former work colleague of similar age died of bowel cancer having recovered from breast cancer.

I lead a virtual normal life apart from the incontinence and ED, and am living life to the full. We had a great family day for Mothering Sunday, My mum, dad and m-i-l, plus my brother and elder daughter with her boyfriend.

I've so much to be grateful for.

I do my PFEs at night. Maybe i should do more than 1 set per day!

Stay Calm And Carry On.
User
Posted 21 March 2015 21:32:58(UTC)

I agree we are much better than many others with various forms of cancer. At least ours has a marker in the blood tests (PSA) that usually shows if it gets worse. don't know how many other cancers have such a marker.
Still doesn't stop me wondering how long the leakage will continue, although I think it has improved somewhat in the last week or so, so fingers crossed, it may not be too long before I can say I wear a pad, just in case.
I do PFE during a mile walk in the am to get a paper, 5 sets, and 1 set whist having a shave etc, so that is 60. Then might do a few during rest of day, but not always. I'm not really sure how many we should be doing...Do you know?
I guess the object is to beef up the muscle so that it is tight most of the time of its own accord wihout having to conciously squeaze it.
I think though that many women of our age group are in a similar position anyway after bearing children and maybe overweight I think that it wouldn't be a total disaster if I had to wear a pad forever.
As for ED I don't know whether I will ever recover. One set of nerves were spared, but there is certainly no signs of life in the old man yet. I do use the pump though and whilst not ideal I guess I could live with it.

 
©2018 Prostate Cancer UK