A mom of two hasn’t peed in five years, and doctors still don’t know why.
Kirstie Scothern, 29, was suffering from a migraine in April 2021, when she realized that she hadn’t peed since the night before.
She said she had drunk plenty of water and even ran the bathroom faucet to help her pee, but she couldn’t go.
Kirstie realized 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 liters 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 wasn’t.
She was sent home with a catheter — a tube inserted into her urethra to drain her pee into a bag — but still couldn’t pee when it was removed two weeks later.
Kirstie hasn’t been able to pee 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’s stopping her from peeing.
“It was horrible,” said Kirstie, a complaints handler from Nottingham. “When I was first told that my bladder may never work normally again and that I’d have to self-catheterize, I felt devastated.
“I was young, a new mom and suddenly something as simple as going to the toilet had become something I could no longer take for granted,” she continued. “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 has 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 remote one while she learned how to self-catheterize.
“It was incredibly painful and it’s extremely difficult to even find your urethra, let alone insert a tiny tube into it,” she said.
“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.”
Kirstie has to set reminders to empty her bladder every four hours because she only feels the urge to pee when it is very full.
Before she learned to self-catheterize straight into the toilet 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 too young to be managing something like this.”
Kirstie has a special key, called 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 bathroom line.
But she said people do sometimes tell her to go to the back of the line.
“It’s very difficult and upsetting, particularly since it takes all my courage to ask if I can go ahead of them,” Kirstie told Talk to the Press.
“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,” she explained. “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 pee 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 — the patient presses a button on a phone-like box connected to an implant at the bottom of their spine, which triggers the bladder to empty.
Despite her belief that she has Fowler’s syndrome, Kirstie said doctors are still not sure what’s causing the problem.
“I think doctors are reluctant to diagnose Fowler’s syndrome because it’s not well known,” she said.
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 pee and how easily you’re able to pass the liquid.
After five years she still doesn’t have a confirmed diagnosis, Kirstie said she’s “frustrated.”
She also noted the difficulty of self-catheterizing when she was pregnant with her second child, now 8 months old, because her belly got in the way.
Though Kirstie sometimes feels like the “world is not designed for me,” she’s found a great support network on Facebook and Instagram.
She argued that most people completely take the simple act of peeing for granted, adding that dealing with difficulties in that sensitive department can take a heavy toll on a person’s self-esteem and make them feel far from attractive.
“I would like others going through this to know that, even though it feels scary and isolating, they are not alone,” said Kirstie.
“You do adapt, and it does get easier.”
