Sorry but a really long moan

Hi everyone and an early happy new year for tomorrow. Well here goes, my saga began in Aug when my bladder really started playing up, constant uti’s and feeling like I need to go to the loo all the time. During the night is the worst I can get up at least 8 to 10 times!!! Anyway my first port of call was my MS nurse who carried out a bladder Scan and said I was definitely retaining far too much urine . She then referred me to a continence nurse who she said would probally talk to me about self catheterising, 4 weeks later I had an appointment where she too gave me a scan, she then asked me to try oxybutin and come back in another 4 weeks . The drugs didn’t seem to help, she then referred me to the urology clinic at the hospital. Another few weeks of waiting and then got an appointment through to go for a urodynamic test which I went and had done, not very pleasant but the lady who carried it out came to the same conclusion that I am definitely not emptying my bladder and have a very slow flow. I then got another appointment through to see a urology consultant to discuss the results, I found out later he was a registrar under gynaecology hmm anyway he suggests I have a small operation under a ga a cystoscopy and stretching of my uretha! To say I was confused and bewildered is an understatement. I wasn’t happy and I spoke to my continence nurse who in her words was very bemused about the op thing, she then rang the urology dept up for me and soke to a consultant who totally disagrees with the registrar . I then asked my nurse if she could just show me how to self catheter and let me get on with it, but ob no she can’t do that until I see this other consultant which I am seeing on the 15th Jan so all in all after 5 months I am still in the same position and really suffering, I do now take long term antibiotics to try and stop all the recurring uti’s. Sorry for the long post but do you think I am in my rights to put an official complaint in and does anyone know the best way to start ? Thank you for reading , take care all. Karen xx

Hi Karen, poor you, what a farce, indeed!

I also have had a lot of wetting accidents (sorry, just realised, that`s the opposite of you, but bladder problems all the same, eh?)

Have you ever tried ldn? I know that it can help with bladder woes. I take oxybutynin and it does help. But again, my probs arent with retention.

I also tried an in dwelling catheter for 5 months. But it didnt work…horror stories I wont bore you with.

But I wonder if that would help you as a slow emptying bladder would probably cope better than the way mine was, which kept flooding, due to by-passing.

I think being on long term anti biotics cant be good for the body. What happens when you need them for some other infection? I`m no expert in this field.

As regards putting in a complaint, if it were me, I think I would wait until after I`d seen the consultant.

He may come up with a good solution.

I do understand how frustrated you feel, as I`ve had my share of being chuffed about by various neuros.

luv Pollx


Dont know where you are situated in the UK but know there is a NHS complaints department that you can complain to here in Scotland,I would google it and find out , my last visit to MS nurse was OK but the one before she said she thought i was depressed, told her it was lack of sleep , so might be an idea to go back and enphasis the difficulty that the wait is causing you, other idead is speak to your MPs office.

Good luck


Thank you Poll, I thought I would wait until after seeing the consultant as I need to get some answers before I trowbridge my tantrum. Thanks for the advice Trishoti I will start looking into things re complaint Karen xx

Trowbridge your tantrum?

I went to Trowbridge college of FE in the 60s! Any connection?

luv Pollx

Flippen spell check sorry Trish and where Trowbridge came from I don’t know lol it should be throw !! Xxx

Oh I see!

luv Pollx