Opening the floodgates!

User

Posted 08 Nov 2016 at 14:43

Dear Friends,

I am completely new to this forum so I'd firstly like to say hello and many thanks for listening.

I'm currently 3 weeks post op. after having my prostate removed (Robotic Assisted) at Leicester General Hospital.

When I chose the title for my first ever post, I felt that this was a two-fold title...firstly, I'm still having to get to grips with the complexities of managing incontinence and more disabling, the emotional impact of having to cope with incontinence.

I've spent time reading many of the harrowing and sometimes inspirational and positive posts by many men...thanks for these as many of the replies have given me hope!

I'm guessing that I'm hoping to get the answer to the $64,000 question in that I was hoping that some of you kind folks would be able to offer your views about when incontinence can/does respond to regular pelvic floor exercises? I know that this is very difficult to answer as everyone is individual. I'm doing the PFE 3-4 times a day...is this too much?

I thought that I was coping with things but today, I just felt myself falling apart as I could feel the urine draining out of me despite crossing my legs and constricting as hard as I could! I just felt my dignity drain away...again.

I just feel that I've been kicked in the nuts all over again. Does this feeling ever end? Does it get better?

Just wanted to thank you all for taking the time and I look forward to any comments or replies.

Kindest and warmest regards

Nick

User

Posted 08 Nov 2016 at 18:35

Hi Nick

I was in a similar position just over a year ago but being quite a bit older than you I guess the emotional impact was not as bad for me so you may not relate to my experience. I had been told that incontinence could result from the op and it could take up to 12 months to recover or it could be permanent. The advice I was given with regards the Kegels was 4 times a day, 10 sets each time consisting of 5 secs hold and 5 secs relax. It isn't nice when you feel yourself leaking so much water but I simply had to decide whether to let it rule me or for me to get on top of the situation. By using the pads that I was confident with I stood in front of the mirror, let the water flow and looked to see if there was any outward sign of what had happened. Nobody else would have known. This meant that I could get on with things and the only person I had to deal with was me as nobody else would know what was happening. Bit by bit things started to improve as I worked out ways of trying to control things that I could deal with. I had 90% control back within 5 months and what I would class as full control by 7 months. Try not to get despondent because as Lyn says it is more to do with having to relearn control and you have to be prepared to accept small improvements in incrementall stages. It's not easy but hopefully you will get there - maybe more quickly maybe more slowly.

This was just my experience.

Kind regards

Kevan

User

Posted 08 Nov 2016 at 19:12

Hi Andy...thanks so much for your reply...as you suggest, I've already made the decision to exercise alongside doing my PFE...I think that I need to have confidence in me pads that I'm using. As I'm sure you know, it is really disconcerting to feel urine draining freely despite clenching for my life...today was awful as I had a massive dump of urine completely out of the blue...in the middle of Asda, this was a real low point...i thought What the hell do I do to cope with this? I think that I'm embarrassed and impatient...again Andy, your thoughts and insights are really valuable...take care 😊

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User

Posted 08 Nov 2016 at 17:19

This early after surgery your problem is unlikely to have anything to do with your pelvic floor. They have cut your urethra, joined the ends back together, removed at least one valve controlling flow out of the bladder and then possibly re-stitched it in a new position. Then they sliced through layers of fat and muscle before flying them back together. Your brain now needs to learn how to control those cut muscles and the new valve, much as you had to learn when being potty trained as a toddler.

PS if you mean 3 or 4 times daily and meant 100s each time you may be doing too much but if only a few tenses then probably not enough
!

Edited by member 08 Nov 2016 at 18:07 | Reason: Not specified

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

User

Posted 08 Nov 2016 at 17:20

Hi Nick
I'm so desperately sorry for how you feel and how unhappy this cancer can make you.
In my 2 yrs on this site , it seems that people are dry almost immediately after catheter removal , or go on to have more serious difficulties. I think it is too early for you to tell though yet. I'm not going to get into the whole PFE debate with everyone. I was dry within a month but still do them daily 17 months on. If I forget for a week I don't leak but " feel" as though I am. I can't see any harm in doing them and I think it must be hard to completely overdo them. It seems luck of the draw and surgeon skill have a lot to answer for. I'm wishing you success
Chris

User

Posted 08 Nov 2016 at 18:31

Hi Lyn...i hope I've got your name right...many thanks for replying!!! You make some fantastic points and when you described what the surgeon may have done, I felt sick!!! I know that results are as unique as each person and I'm guessing that I'm perhaps a little too eager for results (?)...with regard to PFE, I'm doing 40 x 10 second tenses per day...is that ok? Bless you again for offering your advice...you're a star 😊 Nick

User

Posted 08 Nov 2016 at 18:35

Hi Nick

This was just my experience.

Kind regards

Kevan

User

Posted 08 Nov 2016 at 18:37

Hi Chris! You have made some really good points and above all, I really appreciate that you have taken the time to reply. I guess that I'm in a bit of a world of guesswork where I'm still finding my way...although I've got support from my wife and family, I do still feel very isolated and vulnerable...especially in Asda this afternoon!!! I think its all about getting my head around how my life has changed so radically...again Chris, you are a star for replying...thanks...Nick

User

Posted 08 Nov 2016 at 18:44

Hi Nick you are very early I presume you have had your catheter out about a week ago so you would be very fortunate to have control this early , mine was removed 3 weeks post op and on arrival home getting out the car the floodgates opened and remember thinking this will be a challenge , so did PFE but it just went on until i got fed up with the situation and just got the dogs on the leads and went for long walks had to change and shower on return but i do think this gave me control over a number of weeks less pads until none required , hope you improve shortly Andy

User

Posted 08 Nov 2016 at 18:44

Good evening Kevan...I've been completely spoiled by the fantastic response from kind folks such as you, Chris and Lyn...i suppose that I've been panicking...I'm only a week on from having my catheter removed and in my mind I wanted to see some improvement...i think that I need to be patient. You have made some great points Kevan and I guess that I'm scared to accept that things have to change or as you say, adapt to my situation...throwing yourself back 50 years (bladder control wise) has been a huge shock! So glad that you lovely folks are about...kindest regards Nick

User

Posted 08 Nov 2016 at 19:12

User

Posted 09 Nov 2016 at 11:16

I am now just over 4 months post op and my incontinence problem is showing real signs of improvement. I was using 3 or 4 pads a day until about 2 months after the op. Little by little it got better to the point of now using 1 Tena level 1 a day and even that is never very wet. At night I sleep without any pads and have no leaks. I would say PFE do help as long as they are done correctly. I know it can get you down and you see no light at the end of the tunnel but try and stay positive.

User

Posted 09 Nov 2016 at 12:31

Hi Siam(?)...I hope that I've got your name right? Apologies if not...I've had a great response from other folks who have experienced the same kind of problems that I'm having presently. I'm so glad that you seem to have overcome some significant challenges and I look forward to being 'dry-ish'!!! Today seems to be a better day than yesterday but I'm still getting used to managing drips, spills and floods...it seems to be the low mood that I find myself experiencing - it's a bit of a drag ...never mind! Again Siam...thanks for taking the time to reply and I hope that you continue to experience success!😊 kind regards Nick

User

Posted 09 Nov 2016 at 12:40

Originally Posted by: Online Community Member

you may have good and bad days. A few weeks ago I got really down when after weeks of steady improvement I had a really bad day and thought I was back to the start again. From then things have improved and I hopefully I can see some light at the end.

User

Posted 11 Nov 2016 at 13:57

Hello Nick. You've neatly described just one of the numerous indignities this disease leaves us to deal with, but as others have said it seems very early for you to be drawing any conclusions. The healing has just started.

The one thing I would add to what others have said is that the psychological component of this whole process, including dealing with the side effects, shouldn't be under-estimated. Fearing a consequence or outcome is almost guaranteed to provoke its' symptoms for some of us, and maybe you're in that group.

Give it time and know that even if the natural outcome isn't optimal, there's many further interventions possible down the line.

User

Posted 16 Nov 2016 at 15:18

Dear kind friend (I'm worried about saying 'sumdumbloke')...I'd hate to be offensive...sorry!!! Many kind thanks for your comments and insights on this matter. You are so right when you talk about the emotional component of recovering from prostate removal. The past few weeks have been a right old rollercoaster and I'm slowly coming to terms with (1) being incontinent and (2) feeling more confident about actually being able to rationalise what I've gone through. I have to keep telling myself that I'm only 4 weeks post-op!!! I think that patience and perseverance are my two watchwords for now 😊

Again, many thanks for your views and insights my friend...and I hope that you are experiencing every success...kind regards Nick

User

Posted 17 Nov 2016 at 14:11

Hello Nick. Thanks for your kind words. The ones about the roller-coaster resonate very much with me.

Wishing you all the best for your recovery.

User

Posted 20 Nov 2016 at 17:36

Nick,

For what its worth, I agree with much of the good advice you have received from others on this amazing site. There are those who have recovered within weeks and those who take longer than the 12 months you may have been warned it might take before your have regained control. My own experience was pretty similar to yours in the first few weeks after the operation, but I was pretty much dry by 6 months with only the occasional accident caused by coughing/sneezing. Even now, 24 months post operation, I sense that I may have leaked when sneezing but discover that I am in fact dry. I guess that my nerve receptors were interfered with to produce this sensation but nevertheless, the pelvic floor exercises seem to have been worthwhile so don`t lose heart.

Dave

User

Posted 28 Nov 2016 at 07:33

Good to read all the contributions here as it gives hope and confidence that things will improve from the initial starting position after the surgery. It's not a week yet since my catheter came out after 21 days and during the night I have started waking up with the need to go and then when I get to the toilet I seem to be the one that starts the flow......all very gentle but nevertheless I definitely sense the feeling that I have some control.......quite encouraging so early.....but daytime is quite different with free flow being the norm more or less. I'm doing the PFEs as required and hopefully as the healing takes place then things will get back to all ok......it's a big shock dealing with incontinence for real, rather than just talking about it pre op.....I use Tena Pads 3 and at the moment need about 4 per 24 hours to feel comfortable....I probably change them earlier than is absolutely necessary just to get the dry sensation for a while.....got to be positive and get there.....I reassure myself with the knowledge that not having the surgery could and probably would have resulted in a far worse situation not too far down the journey of life.....Paul.....

Edited by member 28 Nov 2016 at 07:34 | Reason: Not specified

User

Posted 28 Nov 2016 at 15:45

Hi Paul...I hope that you are well 😊. You seem to be mirroring my experience in that (thankfully) I'm feeling relatively in control during the night. I too, am getting up frequently to use the loo...sometimes up to 5 times. You described my own experience in that I feel that I have a bit of control in that my bladder wakes me as you would expect. It is this little triumph that has kept me going. There is the odd time when I think that I've regained a bit of bladder control in the day however, this is sometimes a bit of an illusion!!! As with you Paul, I'm too using 3-4 pads a day but I've not yet got the confidence...still a work in progress...keep grinning 😁...kind regards Nick

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