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Pain after Catheter removal

User
Posted 28 Feb 2022 at 17:01

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 13:10

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 15:29

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 15:54

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 21:17

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 21:44

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 22:09
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 17:33

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 18:56

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 22:31

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 22:33  | 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 28 Feb 2022 at 23:10

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 13:09

Hi There


what happed to you was the same as me


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.


hopefully your doing ok ?

User
Posted 02 Mar 2022 at 13:10

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 02 Mar 2022 at 17:03

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 17:10

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 12:03

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 12:36

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 14:00

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 16:03

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 09:11

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 10:49

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 19:47

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 21:19

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 15:24

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 18:21

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 13:36

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.


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



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

User
Posted 01 Apr 2022 at 13:44

Philip, did you get any swelling in the penis.


Thanks Chris


 

User
Posted 01 Apr 2022 at 13:54

Chris,


No swelling, no other problems - just the 10-minute periods of intense pain which gradually subsided. Since having the catheter back there has been no repeat.


Philip

User
Posted 01 Apr 2022 at 14:25

Philip , thanks, I did have excruciating abdominal pain before the catheter removal, that resulted in an ambulance ride, it turned out to be constipation related.


During a minor procedure they managed to puncture my urethra, that resulted in a fairly severe pain that lasted 10-15 minutes but the penis swelled up considerably,  unfortunately too painful to use,😀.


Hope you get sorted.


Thanks Chris

User
Posted 16 Aug 2022 at 16:06
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??
User
Posted 16 Aug 2022 at 22:04

Joe , all sorts of reasons for the pain, bladder Spasms are frequently associated with catheters but you can get spasms without a catheter. Kidney or bladder stones for me were painful when urinating but soon passed, actually passing the stone was painful. My abdominal pain was more likely constipation.  A water infection is another possibility, my clip issues started with smelly urine. Sorry I can offer any other advice.


Thanks Chris 

User
Posted 17 Aug 2022 at 15:29

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 15:54

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 20:59

I posted a similar experience elsewhere on this forum. See 'Sharp pains after surgery' as I can't seem to post link. 


Awful experience. Was admitted via an ambulance. As soon as the catheter was reinserted, all was fine. Had it removed again after 2 weeks  6 days ago and all is fine. Awful at the time. 


 


 

User
Posted 21 Dec 2022 at 21:01

Re inserting the catheter ended the pain immediately. But I did end up calling an ambulance and being admitted. 6 days later all is fine. But will never forget the pain. 

User
Posted 21 Dec 2022 at 21:17

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 21:37

Originally Posted by: Online Community Member


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. 



 


That sounds very familiar. In my case another week was all I needed and althought I was a bit scared at my second TWOC it was absolutelly fine. Never looked back. The urology nurses said that sometimes people just need a bit more time. Nobody seemed to know exactly what it was, but they were all sure it would go away and it did. Another week with a catheter was a small price to pay for not going through that pain again.


From what I've seen it is unusual. I think I've only seen about 6 people mention it on here in 2.5 years.

_____


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 21:44

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 22 Dec 2022 at 01:32

Yes, my surgeon said  I was only the second person in 8 years to experience this. On the plus side, no incontinence since the second catheter removal which is also unusual. No idea if there is any connection. 

User
Posted 23 Dec 2022 at 21:41

Originally Posted by: Online Community Member


Yes, my surgeon said  I was only the second person in 8 years to experience this. On the plus side, no incontinence since the second catheter removal which is also unusual. No idea if there is any connection. 



Interesting. After TWOC 2 I used pads on day 1 for insurance but just a couple of drips. Day 2 was dry. Gave up on the pads day 3. 

_____


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


Prost was the strongest, so Prost ate Ectomy.

User
Posted 15 Jul 2023 at 20:32

Alex, I experienced more or less exactly what you described.


I had a robotic prostatectomy on 21 June and went back to hospital on 3 July for my TWOC. Catheter removal was reasonably painless and I sat in the waiting area with a bottle of water waiting to wee. First time, I produced a reasonable volume in the receptacle but then felt agonising pain internally for about 10 minutes - not such much in the penis/testicles, more in my abdomen/guts I suppose. I took the urine sample to the urology nurses and told them about the pain and they said I should keep drinking water and persevere. Twice more I went to the loo but each time, unlike the first occasion, produced only a dribble of urine. Each time I suffered crippling pain internally for 10 minutes - just horrendous. After the third episode I told the nurses I couldn’t take any more. I was scanned twice and each time they told me I had c.270ml of urine in my bladder, which obviously wasn’t coming out. They also took blood tests and decided to insert another catheter for 2 weeks. 


The blood tests proved ok especially for the kidneys, though my haemoglobin was low (probably due to blood loss during/after surgery) so I’m taking iron tablets and eating more iron-rich food to get that back up. My key worker urology nurse rang a few days later to say the pain might have been caused by a urethral stricture, but they really don’t know. I’m due back on Monday 17th for catheter removal and a second TWOC. I really hope that like you I don’t get a recurrence of the pain, it was indescribably bad. Fingers crossed!

User
Posted 16 Jul 2023 at 22:09
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.
User
Posted 22 Jul 2023 at 21:37

Originally Posted by: Online Community Member


Alex, I experienced more or less exactly what you described.


I had a robotic prostatectomy on 21 June and went back to hospital on 3 July for my TWOC. Catheter removal was reasonably painless and I sat in the waiting area with a bottle of water waiting to wee. First time, I produced a reasonable volume in the receptacle but then felt agonising pain internally for about 10 minutes - not such much in the penis/testicles, more in my abdomen/guts I suppose. I took the urine sample to the urology nurses and told them about the pain and they said I should keep drinking water and persevere. Twice more I went to the loo but each time, unlike the first occasion, produced only a dribble of urine. Each time I suffered crippling pain internally for 10 minutes - just horrendous. After the third episode I told the nurses I couldn’t take any more. I was scanned twice and each time they told me I had c.270ml of urine in my bladder, which obviously wasn’t coming out. They also took blood tests and decided to insert another catheter for 2 weeks. 


The blood tests proved ok especially for the kidneys, though my haemoglobin was low (probably due to blood loss during/after surgery) so I’m taking iron tablets and eating more iron-rich food to get that back up. My key worker urology nurse rang a few days later to say the pain might have been caused by a urethral stricture, but they really don’t know. I’m due back on Monday 17th for catheter removal and a second TWOC. I really hope that like you I don’t get a recurrence of the pain, it was indescribably bad. Fingers crossed!



 


I hope your second TWOC went well and that all is now fine.

_____


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


Prost was the strongest, so Prost ate Ectomy.

User
Posted 30 Jul 2023 at 09:51

GRRW3, Alex, sorry for delay in replying.


Yes thanks, second TWOC on 17 July went fine. The nurse who took out catheter 2 was the same one who inserted it and each time she was brilliant. Interestingly she told me that when the first one goes in in theatre it's often done very quickly of necessity and they are sometimes not as proficient as the urology nurses on the ward!


Anyway peeing after TWOC 2 was fine and has been since. I'm now 13 days since catheter removal and things seem to be settling down. Last night I slept through the night for the first time without needing the loo, which was good. I haven't had any leaks/accidents at all but am still wearing a pad just in case! I think I'll carry on with pads until I see my consultant on 8 August for the post-op report and will see what he says.


My urology case worker now thinks a stricture was unlikely as they are pretty rare, more likely it was just a case of post-op healing needing longer in my case maybe 26 days rather than 12, guess we're all different. I'm now walking 3.5 miles a day and hoping I can resume playing golf/going running sooner rather than later.

 
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