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Pain after Catheter removal

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User

Posted 28 Feb 2022 at 18:01

Hi All

I had my Prostatecomy RALP at Guildford on 14th Feb and all has gone according to plan.

I went to Worthing ( Nearer me ) to have my Catheter removed a week later and straight after was told to go home and take measurements of how much and when I pee'd which I thought was he usual practice ( which I now know is not the correct procedure ) but nevertheless I went home ( 25min in car ) and I didn't leak which I thought was pretty good.

A few minutes after getting home I had a pee, which flowed nicely and when I reached the end and stopped I had this massive pain in my lower abdomen which was incredibly excruciating and lasted 10-12 minutes before it subsided but it was so bad my daughter called an ambulance and they arrived 15 mins later the pain had subsided by then and ell my vitals checked out ok.

They said I should go back and see the Urology team and get it sorted out (they followed me back in case)

I went back and they said they've not had anyone have this before and said I should have a wee and see what happens and low and behold it happed there but they didn't have an answer to my rolling around the bed in agony but said it must be too soon and then re-inserted a catheter and said lets try another week.

Tomorrow (1st) I'm having a CT Urogramme to test for leaks and if ok I'm having my catheter out again but I'm full of in trepidation in case it happens again.

Anyone else has had any Experience or has heard of this happening ?

Cheers

User

Posted 02 Mar 2022 at 14:10

Hi There

ive just had a CT scan dye test and revealed a leak at the joint which they say is likely to be the reason for the pain spasms and now I have to keep the catheter in 2 MORE weeks which I’m not too happy about but at least they found something.
lets see what happens

User

Posted 17 Aug 2022 at 16:29

Originally Posted by: Online Community Member

Hi

Just noted this thread

I was 6 weeks post RARP on 13th August.

On 12th August, after emptying my bladder I experienced the most excruciating pelvic, penile and abdominal pain.

It lasted at least 40mins, and worsened when I lay flat and spread up my abdomen.

It kept occurring after every time I peed, getting worse each time

Eventually I had to attend A and E as the pain was horrific and I was drenched in a cold sweat.

Needed 30mg IV morphine over 3 hours to control the pain and was admitted to urologist

To me it sound like I was leaking urine through my urethral anastomosis into my abdomen

However CT and blood tests are not diagnostic and I await cystogram
Flex cystoscopy has shown no sign of migrated clips etc

This would seem to be very late for an anastomotic leak but cant think what else it can be

Have been recatheterised and this has ensured the pain has not come back

Any thoughts??

Sounds very similar symptoms to what I had, but much later on. It went away after another week of catheterisation though. Link below to more detailed description...

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

_____

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

Prost was the strongest, so Prost ate Ectomy.

User

Posted 21 Dec 2022 at 16:54

I hope you are better now, what was the outcome? I have just experienced the very same thing, one week after surgery the catheter was removed and my urination (in the clinic) was monitored.
3 bouts of absolutely agonizing spasms after having a wee, each successively worse (sweating, nausea, tears, bordering on passing out) than the previous, the catheter was reinserted.
Am told the catheter will remain for another 8 days and then we will try again. Your insights and experiences would be appreciated thanks.

User

Posted 21 Dec 2022 at 22:17

Thanks - that gives me hope because I don’t want to go through that pain again. Hope your recovery continues well 👊

User

Posted 21 Dec 2022 at 22:44

I had bladder spasms about 10 days after catheter removal, started straight after I had a pee I could feel a pain that increased in intensity after each pee to the point I stopped having anything to drink phoned 111 who then advised me I was probably in retention and to go straight to A&E . As you all say pain is unbearable and had to have morphine to ease the pain they gave me antibiotics and I was recatheterized for 2 weeks, thankfully no pain once catheter came back out.

User

Posted 16 Jul 2023 at 23:09

Very similar experience for me last December. The pain was something I have never experienced before. Urine retention. I was actually taken back to hospital in an ambulance and dosed with morphine. Minutes after a new catheter was applied, the pain stopped. Removal 2 weeks later caused no issues. I do feel that it took longer than necessary for the cause of the pain to be diagnosed, resulting in several horrible days for self and family.

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User

Posted 28 Feb 2022 at 18:33

Hi Andy, I'm yet to experience catheter removal (next week) but I think I would want to get a referral back to Guildford. Chris

User

Posted 28 Feb 2022 at 19:56

Andy i did have an excruciating abdominal pain on day two and day four after RARP with the catheter still in. That second episode resulted in paramedics, morphine and an ambulance ride to hospital. They didn't find anything and i was discharged as one of the 30percent of people who get abdominal pain without any apparent reason. It turned out to be constipation.

I was told leakage of urine through the joint in the urethra would make you quite ill.

Thanks Chris

User

Posted 28 Feb 2022 at 23:31

Originally Posted by: Online Community Member

Anyone else has had any Experience or has heard of this happening ?

Yes. I did. Was yours something like this...

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

You will be happy to know that after another week with the catheter in I was perfectly fine.

My urology nurses said it was rare but does happen sometimes. Since I posted that thread 18 months ago, I think two people have chipped in with the same or similar issues.

Edited by member 28 Feb 2022 at 23:33 | Reason: Not specified

_____

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

Prost was the strongest, so Prost ate Ectomy.

User

Posted 01 Mar 2022 at 00:10

Hi Andy,

Sorry to hear this and really hope all will be ok on the next attempt.

My husband had his catheter in for 2 weeks because of bladder neck reconstruction before going back to have it taken out. When he got there they did a cystogram (think that’s right) and noticed a small leak. After speaking to the surgeon they decided not to remove and it stayed in for another 2 weeks to be sure.

Just thinking it could possibly be something like this and it’s just needed a little more time to heal. Find it really strange that they didn’t make you empty your bladder there before letting you go home though.

Best of luck for tomorrow

User

Posted 02 Mar 2022 at 14:09

Hi There

what happed to you was the same as me

hopefully your doing ok ?

User

Posted 02 Mar 2022 at 14:10

Hi There

User

Posted 02 Mar 2022 at 18:03

Sorry to hear that, but it's very interesting that they think a leak is the cause. According to my logic it could only have been one of two things, either a leak as you have or some sort of neurological 'damage' from the surgery.

My guess in my case was a small leak, but the consultant who saw me insisted that if it were a leak my belly would have been very hard and that it was very unlikely to be a leak.

Catheter is inconvenient, but still a lot better than having to go through that pain.

Glad they've sorted you out and I hope you will be completely fine when they take it out.

_____

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

Prost was the strongest, so Prost ate Ectomy.

User

Posted 02 Mar 2022 at 18:10

Sorry to read this Andy. Where I had a prostatectomy a leak test is carried out before catheter removal to ensure the reconnection has healed. I think this is better than taking it out and finding a leak afterwards. Hope all is fine in 2 weeks.

Ido4

User

Posted 03 Mar 2022 at 13:03

As well as the pain after catheter removal (now back in for 2 weeks after CY found leak in joint) I’ve had blood in pee bag,mostly overnight and slightly pink during day, every day since the Op. They say it’s not unusual for this to happen but it worries me constantly. Has anyone else had this ? If when did it stop ?

User

Posted 03 Mar 2022 at 13:36

Andy, i was still passing blood a six weeks after surgery, so passing blood around three weeks after surgery could be described as not unusual. I have a permanent catheter and often get red wine colour urine if I have over done it. I was told Rosé colour "should" be okay Red wine colour needs investigation. Blood in urine often looks worse than it is. Keep in touch with your medical team, they know you better than we do.

Thanks Chris

User

Posted 03 Mar 2022 at 15:00

Thanks Chris

thats very encouraging if you can be encouraged by bleeding, I’m in contact with the head prostate nurse at Guildford who gets back quite quickly.

being nosey why permanent ?

User

Posted 03 Mar 2022 at 17:03

Andy, a fairly rare side effect of salvage RT. It is a Suprapubic catheter so it is in the abdominal wall below the navel, had more than my fair share of urethral catheters.😀

Thanks Chris

User

Posted 04 Mar 2022 at 10:11

Because they found a leak in the joint I’ve been told my catheter had to stay in for 2 more weeks the. Have another pressure test prior to removal but still they haven’t side why and what causes the pain !

maybe this hasn’t been picked up because the NHS Urology Units just seem to be partly disjointed from the Surgical Units (mine was Guildford)

I also get blood in pee bag mainly over night and leaking blood past catheter out of penis when I poo (even though I have minimal straining….I’m sure it’s mostly minor complications but doesn’t stop you worrying that it’s more serious

User

Posted 04 Mar 2022 at 11:49

Hi Andy, You have my sympathies putting up with the catheter for another fortnight. I am also getting a discharge of blood from the end of my penis (probably with a bit of urine as well). In my case this looks like old blood from the operation (now day 10). I'm not sure whether it is something to be concerned about or not. Chris

User

Posted 04 Mar 2022 at 20:47

I had to have a catheter after my biopsy (my bladder seized up under General Anaesthetic, which is apparently not that unusual and then I got an infection) as well as after RARP. In both cases I got blood in the bag overnight and leak around the tube when passing motions. I don't think that these problems are unusual, although obviously not everyone gets them.

User

Posted 04 Mar 2022 at 22:19

Andy cant give you any answers on the pain.

I had a urethral catheter on around 12 separate occasions. I had the urine and small amount of blood bypassing out of the end of the penis on every occasion, I also had the leaking when passing a motion. Those catheters were after dilatations not major surgery. As always if in doubt get back to your team.

You have been bashed about and had organs disturbed,the wounds on the outside may be minor but the the surgery is major.

Thanks Chris

User

Posted 15 Mar 2022 at 16:24

Well it 1 month from my RALP and my cystogram pressure test still shows a leak at the join so I’m now waiting to see what’s next 1) up to 1 month extension to useinv cathater

2) Op to repair leak

Anyone else have this long to sort leak out ?

User

Posted 15 Mar 2022 at 19:21

Andy, have they said what the repair operation would involve. Providing your set up it right a catheter for another month " should be " doable without too much of a problem. You would probably still have to have the catheter after a repair op.

Thanks Chris

User

Posted 01 Apr 2022 at 14:36

Originally Posted by: Online Community Member

Hi All

I had my Prostatecomy RALP at Guildford on 14th Feb and all has gone according to plan.

They said I should go back and see the Urology team and get it sorted out (they followed me back in case)

Tomorrow (1st) I'm having a CT Urogramme to test for leaks and if ok I'm having my catheter out again but I'm full of in trepidation in case it happens again.

Anyone else has had any Experience or has heard of this happening ?

Cheers

Hello Andy,

I just thought I'd let you know about a similar experience I had a couple of weeks ago.

Had an NHS prostatectomy (RALP) done on March 8 and everything seemed to be going to plan until I had my catheter taken out 10 days later. Felt fine until late evening, but immediately after opening my bowels had an incredibly intense pain in my lower abdomen which lasted for about 10-15 minutes. I was in absolute agony, shouting out and not knowing what to do.

I felt fine once the pain was over but when I had a pee some two hours after that exactly the same thing happened. My wife then drove me to the hospital and when I peed there I was in absolute agony once again for the same period of time.

They said they needed a urine sample so had to endure the excruciating pain a fourth time when I peed some two hours later. At this stage they put in another catheter and thankfully things settled down.

They ruled out an infection following a blood test, and a CT scan the next day revealed no leaks or anything untoward.

Two weeks later, with the catheter still in place, thankfully I haven't had a repetition. I am due to have the second catheter taken out next week but am a little apprehensive that the same thing might happen again. I was told that the bladder might have gone into some sort of spasm but have heard nothing definitive.

I hope your problem has or will be resolved.

Philip

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