Mum, 29, hasn't had a wee for five years and 'doctors can't say why'

Mum, 29, hasn't had a wee for five years and 'doctors can't say why' Kirstie Scothern has had to adapt to a new way of life A mum of two hasn't had a wee in five years and doctors still don't know why. Kirstie Scothern, 29, was suffering from a migraine in April 2021, when she realised that she hadn't been to the toilet since the night before. She said she had drunk plenty of water and even ran the tap to help her, but she couldn't go. Kirstie realised her stomach looked swollen, so her husband, Justin, 33, a vehicle technician, called an ambulance. She was taken by ambulance to Queen's Medical Centre, Nottingham, where she had 2.5 litres of urine drained from her bladder and was given an MRI of her head to see if her bladder problem was related to her migraine, but medics said it was not. She was sent home with a catheter - a tube inserted into her urethra to drain her wee into a bag - but still couldn’t wee when it was removed two weeks later. Kirstie hasn't been able to go herself since and uses small tubes to empty her bladder. She has undergone CT scans and special urodynamics bladder tests, but doctors are still no closer to finding out what is stopping her from weeing normally. 'I was devastated' Kirstie, a complaints handler from Nottingham, said: “It was horrible. When I was first told that my bladder may never work normally again and that I’d have to self-catheterise, I felt devastated. "I was only young, a new mum and suddenly something as simple as going to the toilet had become something I could no longer take for granted. I felt scared and wondered how I was going to live like this. The discomfort and always having to think about where the nearest toilet is has a huge impact on my life." Initially, doctors at City Hospital, Nottingham, where Kirstie was treated as an outpatient, thought Kirstie’s bladder problem may be a side effect of the migraine meds she had taken for years, but she didn’t get better when she stopped taking the pills. Kirstie tried Botox to relax muscles to allow her bladder to release, but this didn’t help, and she quit her beloved healthcare job for a more office and home-based role while she learned how to self-catheterise. She said: “It was incredibly painful and it’s extremely difficult to even find your urethra, let alone insert a tiny tube into it. I’d be there for up to half an hour with a mirror: it was very upsetting and very inconvenient. My muscles would all seize up and I wouldn’t be able to put the tube in, which was very, very, stressful.” Disruption to daily life Kirstie has to set reminders to empty her bladder every four hours because she only feels the urge to wee when it is very full. Before she learned to self-catheterise straight into the loo using the little tubes, Kirsty had to carry around a bag for her urine; once her catheter bag leaked at work and another time in a colleague's car. “This was extremely upsetting and embarrassing”, she said. “I’m very young to be managing something like this.” Kirstie has a radar key to access disabled toilets and also a ‘can’t wait’ card to explain to people if she isn't able to wait in a queue. But she said people do sometimes tell her to go to the back of the queue. Speaking to Talk to the Press, Kirstie said: “It’s very difficult and upsetting, particularly since it takes all my courage to ask if I can go ahead of them. It's really distressing when people don’t understand: I often feel I get strangers looking at me when I enter the disabled toilet, as they’re probably thinking I look ‘fine’. "This is something I never thought I’d have to deal with, especially at my age. I just can’t get my head around how this can happen and nobody can tell me why. Apparently this is quite common, but you don’t hear much about it, which makes you feel very alone." Kirstie believes she has a condition called Fowler's syndrome, where women suddenly aren’t able to wee because of a problem with a muscle that allows the bladder to empty. Some patients manage the condition with a special device like a bladder pacemaker, a treatment called sacral neuromodulation; they press a button on a phone-like box connected to an implant at the bottom of their spine, which triggers the bladder to empty. Doctors 'not sure' Despite her belief that she has Fowler's syndrome, Kirstie said doctors are still not sure what is causing the problem. She said: “I think doctors are reluctant to diagnose Fowler's syndrome because it’s not well-known.” Kirstie has undergone numerous tests and exams, including special bladder tests where they fill your bladder with liquid to see when you feel the urge to wee and how easily you’re able to pass the liquid. Kirstie said she is "frustrated" that after five years she still doesn't have a confirmed diagnosis. She said it was really difficult self-catheterising when she was pregnant with her second child, now eight months old, because her belly got in the way. She said she sometimes feels like the "world is not designed for me", but has found a great support network on Facebook and Instagram. Kirstie said: “This has been absolutely awful. I’ve had a really horrible time and there’s no cure or treatment. “People think it’s uncommon, but that’s because we don’t talk about it; I want to break that silence. We take being able to wee for granted. "Having any difficulties with weeing doesn't make you feel attractive. I would like others going through this to know that, even though it feels scary and isolating, they are not alone. You do adapt and it does get easier."