neobladder not working

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I have had my neobladder since the 29th February and finally they have agreed after a cystoscopy it is not working. I have been saying this from early on as it has always just bypassed the catheter. However the consultant kept hoping it would stretch as expected but it can't if there is no urine going in it. I have been totally incontinent for 3 months now and it is very depressing. I am still waiting to see the consultant but can't imagine what solutions if any there can be. Have any of you out there either had this experience or heard of anybody who has and if so did they find a solution? Thanks.

  • 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 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