Evan Francis, 30, from Isle of Sheppey, who works in PR, has been unable to urinate for two-and-a-half years after being diagnosed with Fowler's syndrome - a rare condition which stops the bladder emptying. Her symptoms began around Christmas 2023, when she had days when she couldn't wee. She became so bloated she looked pregnant, and medics eventually drained a litre of urine from her bladder.
Diagnosis and Early Symptoms
Evan spent six months in agony before her diagnosis in July 2024. She went to her GP with back pain and bloating on January 3, 2024, and was given antibiotics for a UTI. Two weeks later she returned with the same symptoms and told them she hadn't urinated in two days, and was told it was another UTI.
An ultrasound in mid-February 2024 revealed 300ml of urine in her bladder, and she was referred to urology. While waiting for an appointment, Evan spent 36 hours unable to wee and was advised by her GP to go to A&E if it got worse.
Hospital Treatment and Catheter Life
After feeling dizzy and sick in a supermarket, she went to Medway Hospital, Kent, where a litre of urine was drained from her bladder. She was sent home with a catheter draining her bladder into a bag tied to her leg. At a hospital appointment two weeks later, Evan still couldn't wee when the catheter was removed and started bloating again.
She had a cystoscopy in May 2024, two MRIs in June, and urodynamics testing in July, where her bladder was filled with water to test its function. Doctors said her muscles weren't able to release her urine, and she had Fowler's syndrome, and would need to be catheterised for life.
Further Procedures and Future Surgery
Evan struggled with 35 UTIs between February and August 2024, and was hospitalised for sepsis in August, so was switched to a supra pubic catheter, a tube which comes out of her bladder and through her lower abdomen. In December 2025, at UCLH, she had a special electronic device implanted at the base of her spine, like a bladder pacemaker, but it didn't work for her.
In February 2026, she joined the waiting list for an operation which will make a tube from her appendix to divert her bladder to her belly button, allowing her to connect a tube and open a valve when she needs the toilet. Evan said: "It's really exciting, and scary because it's an eight-hour operation. But the wait is very long and I feel like my life is on hold until then."
Evan said the condition has ruined her mental health and left her afraid of intimacy. She added: "This is mentally debilitating for a woman of my age. People say I do so well with this, but they don't see how much I struggle with it. I wish urinary retention was more widely discussed and known about."
