Kirstie Scothern has spoken out about living without a natural ability to urinate for five years, saying doctors remain unable to explain why her body stopped working.
Scothern, 29, a complaints handler from Nottingham, England, and mother of two, was rushed to Queen’s Medical Centre by ambulance in April 2021 after her husband Justin, 33, noticed her stomach had swollen dramatically. Medics drained 2.5 liters of urine from her bladder that day, a volume far beyond normal capacity.
The crisis had begun with an ordinary migraine. Scothern realized she had not urinated since the previous night despite drinking plenty of water and running the tap to stimulate her bladder. When nothing worked, Justin called for emergency help. Doctors ordered an MRI of her head to test whether the migraine itself had triggered the retention, but ruled it out.
She was discharged with a catheter, a tube inserted into her urethra to drain urine into a bag. Two weeks later, clinicians removed it. She still could not go.
Today Scothern manages her condition with small tubes she inserts to empty her bladder directly into the toilet, and she sets a reminder every four hours because she only feels the urge when her bladder is already extremely full. Self-catheterizing was agonizing to learn. “It was incredibly painful and it’s extremely difficult to even find your urethra, let alone insert a tiny tube into it,” she said.
Before mastering the technique, she carried a catheter bag. It leaked once at work and again in a colleague’s car. “This was extremely upsetting and embarrassing,” she said.
Scothern believes she has Fowler’s syndrome, a rare condition defined by the National Institutes of Health as urinary retention in young women, typically in their 20s and 30s, caused by a malfunction in the muscle that allows the bladder to empty. Some patients control it with a bladder pacemaker, pressing a button on a phone-like device connected to a spinal implant to trigger release. “I think doctors are reluctant to diagnose Fowler’s syndrome because it’s not well known,” she said.
Physicians at City Hospital, where she was treated as an outpatient, initially suspected her long-term migraine medication. She stopped taking it. Nothing changed. They tried Botox to relax her muscles so her bladder could release. That failed too. CT scans and urodynamics tests have offered no answers.
Five years in, Scothern said she is “frustrated” that no confirmed diagnosis has come. She carries a radar key for accessible restrooms and a “can’t wait” card explaining her medical need, yet strangers sometimes still 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,” she said.
She has built a support network on Facebook and Instagram, though she sometimes feels like the “world is not designed for me.”
Scothern wants others facing similar conditions to understand they are not isolated in their experience. “You do adapt, and it does get easier,” she added.