hi post operation sufferer

User

Posted 05 Sep 2016 at 13:56

hello

my name is russell and i am just 50 years old. i was diagnosed with prostate cancer on the 15 july. i had the operation on the 5th of august to have my prostate removed. ia now 4 weeks in and have incontinence which is getting me down.

it would be nice to speak to other sufferers for some reassurance and information.

many thanks

User

Posted 13 Oct 2016 at 09:53

Originally Posted by: Online Community Member

Being a man, I DO have first hand knowledge of the cancer, the operation and the recovery process; your knowledge is second hand. Let's not get into a "fight" over me trying to give personal advice on this site.

Glendower, please read and abide by our House Rules, including 'be kind' and 'help keep the community peaceful'. Lyn didn't say anything out of line in sharing her view; we ask all members to please look for opportunities to be supportive rather than opportunities for conflict.

User

Posted 25 Sep 2016 at 19:48

Originally Posted by: Online Community Member

My point Lyn is that PFEs are good for you anyway, as Pilates has clearly demonstrated. The fitter a person is when they have any form of operation, the better their recovery will be. That's is what ALL the specialists recommend.

I am not a surgeon and can only go by what I was advised in the months before my operation, during my time in hospital and post op.

Being a man, I DO have first hand knowledge of the cancer, the operation and the recovery process; your knowledge is second hand.

Let's not get into a "fight" over me trying to give personal advice on this site.

Glen

I find that offensive on so many levels.

I wasn't getting into a fight with you - I didn't say that you were talking crap or disagree with you, I simply gave an additional comment. But to be honest, you are a newbie and naive in the comments you are making. You may have no idea what the impact of your generalisations could be but I have seen it enough times on here - how do you think incontinent men feel when people write (in capitals) that all you need to do is PFEs? The problem is that men who have been left incontinent have to deal with the emotional and physical impact whilst carrying around some kind of blaming thing "oh, it must be your own fault for not trying hard enough" Blueytruey's comment is evidence of that - "I guess it's motivation and determination as to whether they are effective"

And don't think that only men do PFEs - any woman that has had a baby or is getting towards middle years knows how important they are in preventing stress incontinence. Thankfully, I still have a pelvic floor like a vice :-)

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

User

Posted 05 Sep 2016 at 17:58

Hi Russell

Sorry to hear you are going through this at such a young age. I was 66 when I had mine done and being retired made things so much easier for me. I had no bladder control once the catheter was removed and it is a strange feeling having to rely on pads. It was an inconvenience having to keep changing them and I can't say that I found any that were comfortable. I found that there was no choice but to accept the situation as I had been warned that incontinence might not happen or it could last for ever or anything in between. It is easy to say that you just have to get on with your life but that was exactly what I did.I chose to keep doing my PFE's and within 4 weeks started back with my part time driving job. Every time I got out of the minibus I wet myself but thought well I am the only one who knows what has happened so just grit your teeth and carry on.Bit by bit I found that I was able to stand up and lift relatively light things without any leakage and I just enter slowly from one little victory to the next. I got fed up with having to rely on finding places to change the pads and so started using the Conveen sheath and leg bag as if I was walking a lot I could not control the leaking. This system was great for me and I would recommend it to anyone

Some say that it makes you lazy but tonly me that is nonsense as you still retains whatever control you have its just the difference between leaking into a pad or a bag. I found the bag to be so much more comfortable.Anyway, bit by bit bladder control returned but this took me about 6 months. I still get a small leak if I cough or sneeze and so I wear a tiny but comfortable little pad for "security" every day but then at 67 I might have been doing that anyway. So there we have it. Yes it is frustrating at first but if you keep working at it and enjoy the victories without focusing on the set backs you will hopefully improve. Nobody has any guarantees but you can't afford to let it rule your life either.

12 months post op I have to try hard to remember the bad days as I try to focus on the good ones.

All the best to you on your journey.

Kevan

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User

Posted 05 Sep 2016 at 17:20

Hi Russell

It may help to share a bit more info about your dx eg PSA, staging, Gleason score etc.

There are many men on here who have had the operation myself included. You can read our profiles by clicking on our avatars.

What I can confidently say is that 4 weeks post op is very early days and you are still recovering.
Were you advised to do pelvic floor exercises to help regain your continence? I believed they helped me although others do suggest they don't help. It can take some time to regain continence so hang in there. I think it took me about 3 months before I was confident not to wear a pad.

Any questions please ask away

Bri

User

Posted 05 Sep 2016 at 17:58

Hi Russell

12 months post op I have to try hard to remember the bad days as I try to focus on the good ones.

All the best to you on your journey.

Kevan

User

Posted 05 Sep 2016 at 18:52

Hello mate
Very early days as others have said. I'm the same age as you ( younger ).
Just try to rest at the moment and recover. It's very taxing mentally and physically , but you have plenty of time hopefully to work on getting things right. It does get easier I promise. Best wishes
Chris

User

Posted 05 Sep 2016 at 19:15

Hi Russell,

It is very early days yet. Were you not given any before your operation of when and how your potential side effects may clear up?

What type of surgery did you have, open or RRP?

Do you have urinary or bowel incontinence, or both?

So, potential side effects of the surgery:

1. life, you survived the op, excellent.

2. Bowel incontinence, do you have that?

3. Urinary incontinence, do you have that?

4. ED, do you have that? I would think so only 4 weeks post op.

Recovery times, are individual to each and every man.

Some recover everything very quickly. Lucky people. Some never recover either one or more of there potential SEs. That is rare and unusual.

I consider myself lucky, in that no issues with bowel control, urinary control recovered so that 7 months post op no more pads.

You are on your own individual road to recovery, be a patient patient. Getting your head around this really will help you.

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 05 Sep 2016 at 19:36

Thanks for the comforting replies. I think im feeling a bit sorry for myself and to hear from other sufferers is a great relief.

From diagnosis to operation it was very quick. My PSA was 13 and gleason score was 3 + 4 . I had the bone scan on the monday and the MRI on the thursday before the operation on the friday.

On the friday i got the results of the MRI with bad news. the cancer had spead to the seminal vasical glands as well and the chance of saving any nerves for ED will be a problem. This was all before the operation on the same day.

I had the operation by the da vinci robot. It wasnt straight forward and took 6 hours with a full blood transfusion . i had to have my seminal vasicals glands removed as well.

I went home on the sunday. The first 2 weeks where very hard but i have a great wife who has been my rock. The catheter was removed after 2 weeks and that was a relief. the freedom of movement made a big difference and the simple things like having a shower and moving around made a difference. It also gave me great relief to have a nomal pee with a strong flow.

In my complete ignorance I thought that after 4 weeks I would be back at work and everything would be back to normal.

How wrong was I.

So I sit here with pee incontinence and a smelly nappy(pad).

An erection is not even in my thoughts until im somewhere near dry.

I have my next hospital appointment on the 3rd october for the next step.

Edited by member 05 Sep 2016 at 19:43 | Reason: Not specified

User

Posted 05 Sep 2016 at 19:59

It is natural and okay to feel sorry for oneself, you have been through a major trauma.

Having realistic and informed expectations will make your progress and the timescale easier to deal with.

This should all have been explained to you prior to your operation.

Regaining urinary control can take anything from weeks to several years.

Other recoveries similar.

good luck but be patient.

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 05 Sep 2016 at 20:06

How sad that everything went through so quickly - if you had had some time between scan results and treatment, an oncologist may have advised that surgery was not the best option. Alternatively, you might at least have had an opportunity to fully understand the potential side effects and likely recovery. Back at work after 4 weeks - most car insurers won't even cover you until 6 weeks post op and my OH (who had open RP) couldn't get car insurer to cover him until 11 weeks. They do say to expect to be off work for between 6 - 12 weeks.

Am I right in understanding that you did not have nerve-sparing?

Edited by member 05 Sep 2016 at 20:09 | Reason: Not specified

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

User

Posted 05 Sep 2016 at 20:14

Hi Russell

As others have posted. This is very very early days. Please take it steady.. I was fit and still am.. see my profile. . I had a lot more time for me and family to absorb impact . From your posts this has happened very quickly. . Any pelvic exercises. As someone else asked. It took me about 3 weeks before I could tie my own shoelaces.. lol. I stand to be corrected however sem. ves. are always removed with surgery. . So no ejaculate. I had zero nerve sparing. So a lot for the mind and body to re adjust to. Hopefully this helps..

User

Posted 05 Sep 2016 at 20:34

Im doing my pelvic floor exercises as explained but am not sure how many to do in a day.

Is it just a case of do as many as possible when you can?

User

Posted 05 Sep 2016 at 21:13

PFE are not always of use to every man.

I did PFEs, all they did was tire me out, and then I would pee myself due too exhaustion.

Think I read somewhere that sets of 100 reps or so, 3 or 4 times a day was the optimum.

They may be a waste of your time but make you feel better that you are doing something, a placebo.

dave

Edited by member 05 Sep 2016 at 21:28 | Reason: Not specified

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 06 Sep 2016 at 17:20

Originally Posted by: Online Community Member

Think I read somewhere that sets of 100 reps or so, 3 or 4 times a day was the optimum.

No wonder you were tired out!... I was advised to do 10 long ones (10 seconds) followed by 10 short ones - 3 or 4 times a day.

KRO...

User

Posted 06 Sep 2016 at 18:18

I have had to deal with incontinence several times due to ongoing urethral problems. Sometimes I did PFEs other times I did not and still regained my incontinence. I used an app on my phone which has reminders and prompts when doing the exercises, it is called prostate aerobics and is free on android and a couple of pounds on apple. Post op I did alot of driving and would do them to pass the miles away.

It is early day but can be quite demoralising. Put "incontinence" into the search box and have a look at the conversations from Ted and mistry.

How much are you leaking and how often, sometimes I would leak a few mls and sometimes upto 200 mls in one go. I put a few sheets of loo roll in a nappy liner, if I had a small leak I would only need to change the tissue and liner. I understand your comment about sitting in a smelly pad, but the tenna2 pads are very good at odour control.

It is early days for you but the sheath system is a life changer but as mentioned before and in the other conversations it is the consultants and incontinence nurses who frown upon their use, but it is us who have to live with the side effects.

Thanks Chris

User

Posted 25 Sep 2016 at 12:25

It is now two weeks since I had my catheter out. Things are going really well as not only am I totally dry every night, but I am also 98% dry during the day, the pads are dry all the time and they have hardly any colour change. I do have to be careful though to ensure I tense before I move suddenly. Moving slowly seems to be the key.

Now, Pelvic Floor Exercises . . . . do they work or not? I know there has been quite a lot of debate about it with some saying that it helps and others saying it is a waste of time. So let me give you my take on it.

I started doing PFEs six weeks before my op. I already knew how to do them because a few years ago, I suffered with back pain; I took up Pilates and within a month my back pain was gone. Now, the first thing you are taught when stating Pilates is how to do a "zip and hold". This is basically a pelvic floor "pull up" and the theory is that if you have a strong body "core" then the rest of the body tends to work much better.

Since I had my catheter out, I have been doing eight sets of ten PFEs every day without fail. I have an app on my phone which reminds me to do them.

Now, I don't know if it's the result of doing the PFEs which has enabled me to progress so quickly or if it's perhaps that I've been lucky. However, I believe that we make our own luck and therefore I shall carry on doing them until I am 100% dry.

So, my advice to anyone who has had or is going to have a radical prostatectomy, START DOING PELVIC FLOOR EXERCISES NOW! You've nothing to lose but an awful lot to gain.

Glen

User

Posted 25 Sep 2016 at 16:03

As stated on another thread, the value and success of PFEs really depends on the cause of the incontinence; Colwick Chris is a perfect example as no matter how many PFEs he did or how perfect his technique, they were not going to prevent clip migration or urethral damage.

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

User

Posted 25 Sep 2016 at 18:39

I am not a surgeon and can only go by what I was advised in the months before my operation, during my time in hospital and post op.

Being a man, I DO have first hand knowledge of the cancer, the operation and the recovery process; your knowledge is second hand.

Let's not get into a "fight" over me trying to give personal advice on this site.

Glen

User

Posted 25 Sep 2016 at 18:57

My husband is a huge advocate of PFEs he was completely dry once his catheter was removed, when he went for his TWOC he was given a huge pack of pads which he never needed and he passed them on to another gentleman who was undergoing RT with him. when a friend of his phoned about the operation that he was having with the da Vinci apparatus he emphasised the importance of theses exercises and his friend also gained continence.

I guess it's motivation and determination as to whether they are effective.

He also had a problem with a clip but remained continent

Edited by member 25 Sep 2016 at 18:59 | Reason: Not specified

User

Posted 25 Sep 2016 at 19:07

Originally Posted by: Online Community Member

I was initially almost dry just 2weeks after the op, so my pre op PFEs may have helped and I would not discourage guys from doing them. Lyn's post prompted a thought, could all my vigorous and very frequent post op PFE's have contributed to my clip migrations.

Thanks Chris

User

Posted 25 Sep 2016 at 19:48

Originally Posted by: Online Community Member

I am not a surgeon and can only go by what I was advised in the months before my operation, during my time in hospital and post op.

Being a man, I DO have first hand knowledge of the cancer, the operation and the recovery process; your knowledge is second hand.

Let's not get into a "fight" over me trying to give personal advice on this site.

Glen

I find that offensive on so many levels.

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

User

Posted 27 Sep 2016 at 09:28

Having done some research, the medical publications advocate the effectiveness of PFE the stats support this. It's over ten years since my husband's RP . What is interesting is that I had a stroke three years ago and I became incontinent which was a horrible experience. I rembered my husband's use of PFE. also I had attended Pliates so I set to and did my PFE. With excellent results

User

Posted 12 Oct 2016 at 17:14

I am only talking from experience.

I is very well known WorldWide that Pilates is one of the very best methods of keeping the body as fit as it can be without putting it under too much stress.

The first fundamental that you learn with Pilates is "core strength" and once you have achieved that then the body will find itself in a much stronger position. Core strength is achieved through the "zip and hold" technique which is basically Pelvic Floor Exercises.

"Offence" cannot be given, only taken and personally, if you were very offended at many levels by what I said, I strongly suggest that you extract yourself from your cotton-wool cocoon and "man up", lol.

Oh, I just love this!

Glen

User

Posted 13 Oct 2016 at 09:53

Originally Posted by: Online Community Member

User

Posted 13 Oct 2016 at 21:39

Hmm.

Edited by member 13 Oct 2016 at 22:47 | Reason: Not specified

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 13 Oct 2016 at 22:39

I understand that having pelvic floor muscles "like a vice" may be good in some instances but . . . . no, I just can't bear to think about it . . . locked together forever, roflmao.

Just have to take a light hearted view about it . . . after all, I have less than a hundred years to live!!!!

User

Posted 27 Oct 2016 at 22:00

hi all

what a shame that my original post was turned into a slanging match..will not be posting anymore.

User

Posted 28 Oct 2016 at 10:32

Originally Posted by: Online Community Member

hi all

what a shame that my original post was turned into a slanging match..will not be posting anymore.

it will be a shame if people feel like they need to stop posting because of others. We are all only here because we were dealt a crap hand.

I too felt down and thought it would not get better at about the same stage as you post op. Now 4 months post op I am 99% dry and things look a lot better.

My surgeon sent me to see a lady who helps with incontinence and since then it got better on a weekly basis. When doing the PFE she had me squeeze and hold whilst breathing out and contracting my stomach inwards. I did 10 reps of 10 seconds each x 10 sets. This was done lying down. I still do this now and think it was/is a great help.

I hope you do not feel you cannot post on here as this site is a great sounding board.

User

Posted 28 Oct 2016 at 10:47

Sorry newsensation - please forgive us and keep posting.

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

User

Posted 03 Nov 2016 at 00:36

Good new folks,

Had my post-op meeting with my consultant this afternoon. PSA level undetectable and found that the cancer was at the point where the prostate joins the urethra, which is a sphincter muscle. If I hadn't been diagnosed as early as I was, it is likely that he would have had to cut that away too, meaning that I may have been incontinent for life without further surgery and implants; but they just managed to save the sphincter and also he thought that the nerve pathways are pretty much still intact, so there is hope in that department yet!!; I have a meeting with the ED nurses later this month in the hope that "Harold" can be made into something like his former self rather the "chipolata" at the moment, lol.

Leakage is now almost zero, although sneezing is still a bit of a problem but did you know; it's impossible to sneeze with your eyes open, so now I walk around looking like Marty Feldman, lol. So, I still wear a pad during the day.

I am doing the Great North Run next year for this wonderful charity and will raise as much money as I can.

OK, so I'm old, cantankerous and sometimes can be a right PITA (pain in the arse) . . . however, I thank you for your support and will stick around.

Onwards and upwards!

Glen

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