I want to pee again!

16 years ago, with a 9 week old baby, I suddenly stopped passing urine. This coincided with drainage of a pilionidal abscess but was eventually but down to childbirth as the cause.  It took about 4 years to eventually get a diagnosis of Fowlers Syndrome but the conventional way of dealing with things were painful and caused numerous infections. I persevered but eventually my urethra gave up and self catheterising was no longer a viable option. In 2011 I underwent surgery to create a Mitrofanoff. A stoma to self catheterise through.  This worked for a short period of time but then would leak constantly. Various methods were tried to try and resolve the issue but sadly to no avail. Neuromodulators were tried but on the second attempt I ended up with an infection near my spine so this became another none option.  In 2015 I underwent another formation of a Mitrofanoff and for a while this worked well. It would shrink a lot so was dilated every 3 or 4 months and this was a workable situation for a while. I felt life was finally getting back to some kind of ‘normal’. I started a degree and managed to fly through level 1 but in May last year the dilatation could no longer be done. The channel had fully closed and there was a number of false tracks which were causing it to break down.  In November 2019 I underwent yet another attempt to fashion another Mitrofanoff and if this wasn’t able to bedone then the plan was to remove the bladder and form a urostomy.  Surgery had to be abandoned mid way and I was transferred to ICU. The surgery had become dangerous and to continue wasn’t an option. My bladder and bowel are stuck together with adhesions and my ovary had grown a large cyst. During surgery my bowel was becoming compromised and it was felt if they continued they risked having to remove that along with the bladder.  My current situation is that I appear to have exhausted the ability of the NHS surgeons. While I am 100% thankful and grateful to them I know they are limited with what they can offer. There are only 2 surgeons within Scotland who deal with Mitrofanoffs and both are no longer viable options.  This leaves my only choice currently of having a subrapubic catheter fitted. Due to Fowlers Syndrome this means I am in constant pain, I have had constant infections since November and the impact it has on my life is huge.  There is an option to go and see a specialist in London but due to the complicated urological history I would need at least a double, potentially a triple, appointment to discuss any further options that may be available. There is also the added costs of accommodation and travel. Unfortunately these aren’t amounts I am able to raise in such a short space of time so I have been encouraged to attempt a GoFundMe. I know there are more worthy causes out there but this is my final option for attempting to find some solution to getting my life back to some kind of normality. I have other health issues which can cause issues but this is the biggest thing holding me back.  If I can make this trip in the next couple of months then Ican either bring back ideas from one of the top urologists in the UK for my urology team here or I can then look at the options that may be available to have them done elsewhere.  If you can’t donate then please share where possible. Thank you for reading xx