Hi Pressure/Low Volume Neobladder

Hello ACQJ . Sorry to hear what you are going through. I can't help but just highlighting your post and hopefully someone with experience will be along to offer some advice. Best wishes.

Do you have a CNS to consult? I do recall being told that neo stays elastic for around 8 months - after that difficult to stretch if too small, or shrink if too big. Sounds like you are perilously close to that limit, which is maybe why things are not going so well for you. When I was training, it was the same, that I was dry until neo filled, then started leaking  (despite pelvic floor contraction), although I retained sufficient to stretch to gardaully extend time between voids over  a matter of weeks. I was told to put up with leaks and hold on as long as possible. I did that by sitting down or standing still once I was past 1 hour (or more, later on) and when it got too painful/felt too full, made sedate progress to the toilet to empty. I learnt techniques to avoid putting pressure on abdomen when moving about

Have you actually measure the amount you can hold & the amount that comes out, & checked to see if any still retained (by self catheterising)? Progress can be slow at first and may be months before reliable dryness. As far as protection is concerned, you might be able to get better incontinence pads via the District nurse, but probably not enough for 24 hour use. I bought supplies online, better options & prices than on the High Street. Currently I use Ageuk but there are plenty of specialist suppliers online. look for the maximum absorbency incontinence pads. 

Hope you are able to make headway soon. 

Thank you, Teasswill.  I was unable to stretch my bladder the first 8 months after surgery because of the fistula so that would make sense.  Unfortunately, not exactly what I wanted to hear!

Hopefully not all lost! I have heard of people years after surgery who have over-stretched and got floppy neos which they can't empty, but with training have managed to get back to a better size. So I guess still time to stretch too. Neos do take a couple of years to really settle down. Are you able to void voluntarily at all? Sometimes people have to start with a shorter time and build up slowly. Not much fun when you're this far past surgery & wanting to get on with normal life. Best wishes.

I really hope that is the case!  Yes, I can void voluntarily if I get to the bathroom before the hour mark, otherwise it just all comes out at once.  It's been 13 months since my neo surgery so I'm pretty tired and stressed out over the incontinence.  My quality of life has deteriorated significantly.  I have a meeting with my surgeon in a couple of weeks and hopefully she will have some suggestions.  If not, I'm ready to move on with conversion surgery in 2025.