Question about Involuntary Urinary Retention

If you are unable to pass urine again after catheter removal, they might teach you to do self catheterisation to empty it. It's a bit odd at first but you soon get used to it & it's easy to do. I have to rely on self cathing with a neobladder after RC. Supplies of single use caths come via NHS, ordered from a distributer online.

I chose to have RC rather than try BCG. Have you had a stage & grade yet, or is that what you are waiting for now? Once that is determined, the hosp can talk through all the appropriate options for you.

Hello Vuelta,

Welcome to the group. I'll send you a rpivate message.

Gandullf.

Hello Vuelta.

I had the same experience after a TURBT. I had some blood loss and clots. I passed water once; then from the middle of the night, I desperately wanted to wee but couldn't. In the end, I was in so much pain that I went to A&E, where eventually they got the urology doctor to insert a catheter. I had this for about 10 days before it was taken out. 

I, too, was worried about a recurrence of retention after the catheter was taken out. I had an induction course of BCG (six lots) and have just started my second course (three lots). I always worry that the retention will return, but it hasn't for the last five months. The test will be in February when I have a cystoscopy under general anaesthetic; I will alert staff as to what happened last time.

I have had a trouble free three months since the induction curse of BCG.

It sounds early days to consider a bladder removal. BCG seems to be a better option at the beginning but the MDTeam will advise when the result of the biopsy is known.

We all get worried; but, as you see from the Group, we manage.

Do respond to my "friendship request" if you would like further information.

Gandulf.

Hi

Unfortunately Vuelta i dont have much to contribute. I do think the after effects of the turbt cause so much anxiety in one way or another. I hope you find a solution that works for you. Best wishes.

Gandulf, im interested in what you said about after your TURBT and wanting to wee in the middle of the night but not being able too and the pain it caused.

If you dont mind me asking did that pain and inability to urinate last one night or multiple nights?

The reason i ask is that my grandfather had very similar experience where in the middle of the night hed wake up needing to wee. then hed get really intense pain. He had nephrostomies placed so his wee goes straight out of his kidneys so he never actually had the option to wee the normal way through the bladder but he still had that urge and intense bladder pain night after night. sometimes in the day too but they were less intense. He was told his pain was due to bladder spasms and was given something to relax the muscles, they said it would take up to 2 weeks to work. so the pain continued with that medication and pain meds. but the frequency has reduced now and some nights he doesnt get the pain. i guess im interested in the similarities. did they give a reason for the intense pain you would get at night?

Hello Na Aa,

I was told that my inability to wee was caused by the muscles seizing up as a result of the operation (TURBT).  Sounds the same as your grandfather. The pain was excruciating so I sympathise with him. The catheter solved the problem for me. I only had the pain one night. Since then, I haven't had any pain but it is still sometimes difficult to wee; I have to wait and be patient! Some of the sensitivity has gone.

I hope you manage to find an answer to your enquiry about the radiotherapy. You could 'phone the Macmillan support line to ask: I have found them very helpful. Make sure you speak to a nurse, not the general information service. I think they are open 7 days a week until 8.00 p.m.

It does make things difficult for others when people don't want to know the prognosis. Generally, it is easier all round if it is all out in the open; but each must make their own choice.

I do hope you and your grandfather manage to find a way through it. Do keep in touch and let us know how you are doing.

Best wishes and thoughts,

Gandulf.

the pain appears to have been the same. thats a good idea, i may give them a ring tomorrow. thank you for your response and best wishes to you too 

Hi Vuelta, I have had 2 TURBTs and 1 rigid cystoscopy and on each occasion had urine retention. I had a catheter in from the start of each and taken out 5/8 days later  and everything was fine.

It seems we get retention due to the trauma  and once it settles a bit all is well.

Good luck with yours.

Vuelta, did you get the catheter removed? how have you been doing since?

Gandulf and Foxbrush seem to have had experiences where once the catheter was placed and then removed after 7-10 days their symptoms were resolved. 

I hope the same happened for you Vuelta.

My grandads case is a little different due to his nephrostomies, however the intense pain associated with the spasms have been absent for a number of days/nights now and after reading the other comments, i now wonder whether its because the muscle relaxants have finally "kicked in" or if the spasms have just stopped (in line with the timelines youve all experienced) hmm

Best wishes to all