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Post RRP - Discomfort in Perineum / Prostate site

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User
Posted 12 Nov 2022 at 20:03

Chris, I haven’t had any change to my urine? but I do self self dilation weekly as I had a stricture about 18 months ago. 

User
Posted 12 Nov 2022 at 21:36

Dennis ,I developed a stricture not long after surgery and had lots of dilatations and had a long period of doing daily self dilatation. The self catheterization could be the cause of the perineum pain either through rubbing, introducing an infection or dragging some debris into the urethra.

Thanks Chris 

User
Posted 12 Nov 2022 at 21:41

Thanks for that Chris. How long did you did you continue with self dilation?

User
Posted 12 Nov 2022 at 23:10

Dennis, you probably don't really want to know. I did it for around three years, in that time I went back into theatre around 12 or 13 times. We were taking a very conservative approach to the treatment preferring dilatation to incisions into the scar tissue. Prior to needing salvage RT I had a suprapubic catheter fitted in case the RT caused the stricture to close up. Quite rare but the SRT damaged the bladder and I have the suprapubic catheter for life. I can still pass urine through the penis so the stricture is open.

I did find doing weekly like your self was better than daily or every other day.

I was going to have urethral reconstruction and possibly an artificial sphincter but the rare bladder damage meant it was not a practical solution.

Thanks Chris 

User
Posted 13 Nov 2022 at 20:52

Wow Chris, you have certainly been on a challenging journey!

I am also in my 70s and try to keep myself active and fit. I consider myself very lucky that my PC was detected in a routine medical before I retired. I had no symptoms! I always feel so fortunate when I hear the experiences of men with advanced prostate cancer

I have a call with my consultant, (Name removed by moderator), on Friday when he will advise me of my latest PSA test. I will take the opportunity to advise of the ache from my perineum, although minor,  as it is not something we have discussed previously.

Best wishes for the future and managing your ailments. 

Dennis

 

 

Edited by moderator 13 Nov 2022 at 22:38  | Reason: Not specified

User
Posted 16 Nov 2022 at 15:29

Originally Posted by: Online Community Member

"I am 2 1/2 years post RARP and am still getting pain from my perenium area when sitting for some time, eg. watching TV. It is more an annoyance than a severe pain, but I would like to know if anyone else had had a similar problem and what they have done to relieve it. I stopped doing pelvic floor exercises about a year ago as my continence was under control."

 

 

Dennis,

You say you've stopped your pelvic floor excercises - I was told by my incontinence nurse I would need to do them for life as with any muscle if you don't use it/them, the muscles become weak and the risk of becoming incontinent again increases.

I would be interested to know if anyone else has stopped doing pelvic excercises and how did it affect their continence

Rob

Edited by member 16 Nov 2022 at 15:30  | Reason: Not specified

User
Posted 16 Nov 2022 at 15:51

Hi Rob, I have now been advised by one of the specialist nurses at PCUk to restart my pelvic floor exercises for the reason you state. Regards, Dennis

User
Posted 17 Nov 2022 at 16:16
Hi Dennis,

A small inconveniance doing the excercises if it means no problems with leakage

Best wishes

User
Posted 17 Nov 2022 at 16:32

Agreed Rob

User
Posted 18 Feb 2023 at 10:48

I am 2 weeks today post op, and the advice and comfort given on here is terrific.

All the issues are clearly more common than I thought, and my biggest concern is going to be that my job, requires me to drive for upto around 3 hours max, sit on my backside and drive the same home.

I will be working from home after next week for a while, but again its sat on my bum at a PC.

Any tips at all, and I am looking forward to bag removal on Monday? 

 

User
Posted 18 Feb 2023 at 12:13

I went back to work 4 weeks post RP. I sit on my backside 8 hours a day. Yes certain sitting positions would give me a level of discomfort. For 1 I would get up and walk around a bit. Since I was doing my pelvic floor 6 times a day my alarm forced me to do this. I also checked my sitting position regularly. Obviously driving is not going to make either of these easy to do.

4 months post op back into bad habits but no discomfort...

User
Posted 18 Feb 2023 at 12:38

Thanks Jim, any tips on sitting at all? 

User
Posted 18 Feb 2023 at 12:39
It seems very quick to be going back to work. General guidance in the past has been to have at least 6 weeks off after keyhole RP and 10-12 weeks following open surgery. If you must return to work so soon, perhaps just a couple of hours a day to begin with - physical recovery from RP uses about 5000kC per day so you may feel very tired very quickly and at this point, you don't know how continent you will be.

Some men do recover exceptionally quickly but many need those 6-12 weeks and there is no shame in that. The very macho "I was playing golf the day I had my catheter out" or "I competed in the World's Stongest Man the next day" creates a misleading picture of what is normal and can make other men feel they are somehow being soft or weak.

I don’t know of any official data but based on the membership of this forum, the men who have gone on to develop hernias almost all did far too much too soon.

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

User
Posted 18 Feb 2023 at 13:14

Hiya, I will be working from home to start with for some time. 

My work is almost all behind a laptop screen, so it's not exacting, but yes I will not be putting myself in any physical danger.

I think that because you cannot see it, you just don't appreciate just how much has gone on underneath. My wife keeps telling me as much. I'm certainly not macho enough to say "hey look at me". So I will be listening to everyone and certainly taking your advice, thank you.

User
Posted 18 Feb 2023 at 15:48
Ha! I wasn't suggesting that you would be entering any strongman competitions... I was thinking of a member here some years ago :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2023 at 17:44

I think I'm underestimating what has happened (as my wife keeps reminding me) lol...

User
Posted 18 Feb 2023 at 18:54
As I said, your body needs 5000 calories per day to heal after RP - that's either a lot of food to consume or a lot of resting up!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Feb 2023 at 20:27

Makes you think doesn't it. 

I shall take and use all the advice I can get.

It's been so quick, that i've still not had time process it all.

User
Posted 20 May 2023 at 18:14

9 days out of RARP surgery and today started with the pain - almost like severe constipation but my bowel movements have been quite loose so jumped on to Google and found this conversation. So thanks for all of the comments and I now feel more comfortable that this is a typical issue and nothing to be concerned about.
Bladder control seems to be reasonable - very slight leakage and I know I have 30 secs to get to the loo after standing up - but I do seem able to start the flow on command and the bladder is emptying in one go - been a few years since I had that LOL

Watched a video on YouTube of the entire procedure today - I can post a link if anyone wants it - now I know why it takes a couple of months to heal LOL.

Edited by member 20 May 2023 at 18:16  | Reason: Not specified

User
Posted 28 Jun 2023 at 00:01

Hi Rich,

read your post. You could not have described my situation any better! I am 7 weeks post RP and still have perineal pain when sitting that radiates into my penis. This occurs after sitting on a firm chair or riding in a car. It makes my bladder spasm and feel like I have to pee, which I don’t need to most of the time. Rest and sometimes ice makes it feel better. 
Unfortunately, I am grounded to be at home right now! 
Did your situation finally resolve? Like to hear the details. Give me some hope!

 

Jihn

 
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