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User

Posted 28 Jun 2020 at 10:45

I had a RARP 2 weeks ago, which I am told went well. I am 47 and generally fit and healthy. Bilateral nerve sparing and good join etc. Had Catheter removed 7 days later and was recovering well and continent without pain - becoming used to the new rhythms and in general very happy with results.

Then on Friday, having had the catheter removed on Monday afternoon, I woke at 6am and got up to have a morning pee. Nothing abnormal happened until about 20 - 30 seconds after I finished flow. I got a sudden and incredibly intense pain in the prostate area. Burning, stabbing, excruciating pain. Started subsiding after 15 or 20 mins and was gone maybe 45 minutes later, so that I could rest and relax. But then obviously the need to pee to return... This happened on and off all day and night - every time I peed - obviously it made me extremely reluctant to pee or drink anything, which although unsustainable, just was a natural reaction to avoid pain. I called the ward where I had the op 2 or 3 times and was told to rest and try ibuprofen. That it might be spasms. I ended up taking codeine and buscopan to try to manage the pain but it didn't touch it.

Finally, I called the ward again and begged for relief which came in the shape of a second catheter. That has been working fine and I have had no pain. Lots of gas and discomfort from the previous day of pain and medication so that has set me back a bit, and I am worried that whatever the first problem was may have been caused by straining anyway.

So I was looking for some advice about what the pain might have been from. Did anyone have anything similar? I have had a kidney stone and this was up there in terms of severity. Repeatedly all day.

And what now are the implications of a second catheter??

Thanks so much in advance for any advice.

Jeff

User

Posted 30 Jun 2020 at 00:53

Hi Jeff, sorry I can't help. I think your post may have dropped off the bottom of the list, but this reply will bump it back to the top. Hopefully one of our more experienced regulars will spot it and help you.

Dave

User

Posted 30 Jun 2020 at 06:51

I don’t know what’s going on but maybe you could call one of the specialist nurses from PCUK. They’re very good.

User

Posted 30 Jun 2020 at 07:24

Jeff

I have a permanent suprapubic catheter, so bladder spasms are a frequent occurrence, my spasms are very intense for a few seconds then subside to nothing in a couple of minutes.

The worst pain in that area a few days post op was caused by constipation, very intense until the paramedics gave me morphine.

I had my urethra punctured during a follow up procedure, very painful as the urine got into the soft tissue. The penis swelled up bigger than an erection would be and it took a while for the pain to subside, the process repeated each time I urinated.

Also passed a kidney stone a few months post op.

A few of us on here have had problems with migrating surgical clips. If one is floating around in your bladder it could be causing an issue, but it my case it was accompanied with some very putrid smelling urine.

I assume the catheter was fitted in urology , it is often said on here don't let any Tom ,Dick or Harry catheterise you after a RP. Make the most of a few more nights not having to get up.

Thanks Chris

Edited by member 30 Jun 2020 at 07:28 | Reason: Not specified

User

Posted 30 Jun 2020 at 08:23

Thanks guys - appreciate the replies - I spoke to a nurse yesterday who told me that they think there may be a leak around the anastomsis and that urine is getting onto soft tissue (as you mentioned Chris).

I am having another week with catheter and then a test with dye to see how stable the join is - and then, hopefully, remove the catheter. Only thing is, that having been fine post catheter for 3 or 4 days last time, I am really concerned that this searing pain is going to return and that this is going to become a regular thing....

In any case, thanks so much for your messages and support.

User

Posted 30 Jun 2020 at 22:48

Hi Jeff

Umm. I was actually going to reply to Alex. See. his post.

Unbearable pain on urination post TWoC post RARP

I had 'similar' to both of you. Excruciating pain post voiding like you. 20 seconds after. Alex's pain I understand was not post voiding though.

Mine came from zero. I took no medication post op. Apart from fragmin. Looking back at my notes. I did pass a hem-o-lok . Very small . Looked like 1mm or less. I didn't realise what it was at the time. The only reason I saw it was after catheter removed I always urinated in a glass to look at colour and volume for a few days. I never kept it and thought it was debris.

My pains only lasted 3 days elapsed. Ie only for about 5 mins after each voiding. I've had no issues since, now over 5 years.

Other than I think everyone gets. Ie Phantom aches and pains, bladder still seems to trigger a need to empty after about 1 hr yet I can leave for 5 to 6 hours etc. Flow is excellent.

I don't think this was spasms, cause was never discovered and I've never had anything like it since. I mentioned to consultant, at first review, and he didn't seem to have any answers. I very much doubt you have any leakage, my own concern at the time. I was not re catherised so can't add anything. I'm sure it will be fine, obviously it's ideal if the join heals with minimal scar tissue forming.

My consultant was very helpful and informative, basic stuff yet not always made clear. Ie bladder will reposition as sits lower. Numerous nerves will grow over time. I had zero nerve sparing. Treat the bladder kindly for a few months. Ie caffeine reduction. . Hopefully all sorted very soon.

Regards Gordon

User

Posted 06 Jul 2020 at 07:44

Originally Posted by: Online Community Member

Hi Jeff

Umm. I was actually going to reply to Alex. See. his post.

Unbearable pain on urination post TWoC post RARP

I had 'similar' to both of you. Excruciating pain post voiding like you. 20 seconds after. Alex's pain I understand was not post voiding though.

Actually it was during voiding. About 15s into a wee. Was unbearable burning pain starting the testes and radiating outward. Building for about 5 minutes and receding over another 5. I put up with it until the bladder got too full and I had to go in for another catheter. They wrote me up as 'retention - TWOC failure'. But I was perfectly able to piss until the pain stopped me. I suspected a leaky joint, but the registrar said my abdomen was soft and if leaking it would be firm. At the end of the day, it's fine now and that's all that matters.

After another 6 days of catheter in, I was completely fine though.

https://community.prostatecanceruk.org/posts/t24502-Unbearable-pain-on-urination-post-TWoC-post-RARP

Edited by member 06 Jul 2020 at 08:37 | Reason: fix a typo (what is an 'abodomen' anyway? ;p )

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

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