neobladder not working

Hi Perdita,I’m so sorry to hear this.I really hope something can be done to help.Do you have to wait long to see the consultant ? Love Jane x

Hopefully appointment should be in a couple of weeks now.. Fingers crossed.

I can understand how depressing that must be for you. That is a long time to leave you without investigation. Where is the urine going? Some ladies develop a fistula (a hole) between the neo & vagina, so the urine just leaks out there. Hopefully that can remedy the situation, though it may mean more surgery. Take heart that the neo stays elastic for some months, so there is till time to get it operational. Best wishes.

Thanks for your reply. I have no idea what is happening inside so don't understand myself where the urine is going, only that it is a continual drip.to the outside. That's interesting what you were saying about a possible fistula though .So far nobody has suggested any theories. I think they were hoping a miracle would happen and it would suddenly all be fine! 

Hi Perdita,I can’t believe they have left you so long like this.I do think the follow up care if something goes wrong can be sadly lacking.Fingers crossed that you can be helped as soon as possible.Jane x

Hi Perdita,

I am going through the same thing now as you did a few months ago (constant leaking not allowing my neo to expand).  Did you find a solution?  Thanks, Ana

Hi, are you managing to empty anything at all out of neo? Have they got you self catheterising to check?

When I was in training it did feel like a lot of leaking. I was lucky, was dry while neo filled, but then leaked (in spurts - I rather expected a regular flow) until requisite 2 hours before attempting to empty. My CNS said to put up with leaks to expand neo. I did that by sitting down once the leaks started, then when it got too painful, carefully standing and making  a slow walk to the toilet.

Some people have to build up very slowly, maybe just trying to hold on for an hour or even shorter timespan at first. If you really are not filling neo at all, then there is a problem. Best wishes.

Hi there

Sadly no. After 5 months and yet another cystoscopy they found a fissure (tear) between the neo bladder and the vagina which is why the neo bladder doesn't hold anything, urine just runs down through what's left of the vagina and out. I have been referred to another hospital and last week had a meeting with another consultant who is going to try to repair it in a couple of weeks. It might not work but is worth a try. Failing that it would mean going for another big operation to get a stoma. So I'm afraid I can't be of any help as after 6 months I am not at the stage you are now, so I hope you get some help with this.

That's rotten for you, to have been left so long before they discovered the fistula. Hope the repair works OK and you can finally get neo working. All the best.

Hi Perdita,I’m so sorry you are still having all these problems.I hope they will be able to repair the fissure.Jane x