Evan Francis, 30, has spoken out about living with a rare condition that left her unable to urinate for two and a half years.
The British woman was diagnosed with Fowler’s syndrome after months of misdiagnosed symptoms, repeated hospitalizations, and dozens of urinary tract infections that culminated in a life-threatening sepsis case. Her journey began in January 2024, when she visited her general practitioner complaining of back pain and bloating and was prescribed antibiotics for what doctors believed was a UTI.
Two weeks later, Francis returned to the same practice with identical symptoms plus an alarming new development: she had not urinated in two days. Medical staff again diagnosed a UTI. An ultrasound the following month revealed she still had 300ml of urine remaining in her bladder, prompting a referral to urology. Before that appointment could take place, she endured 36 hours without being able to wee, her condition deteriorating rapidly.
She told Sell Us Your Story that she “looked nine months pregnant” and felt dizzy and sick during that period. She went to hospital, where a litre of urine was drained from her bladder. She was told she would have “gone septic” if she had waited any longer. A catheter bag was inserted, and she went home unable to leave the house for five days because she felt insecure about the visible medical equipment.
The bag was removed two weeks later, but the bloating returned. It took until May 2024 for a cystoscopy to be performed, followed by two MRI scans in June and urodynamics testing in July, before doctors finally identified Fowler’s syndrome as the cause of her symptoms. The condition, which solely affects women, causes full or partial urinary retention when the urethral sphincter fails to relax to allow normal urination. The peak age of onset is 26 years old.
Being told she would need to be catheterised for life “destroyed her mental health,” Francis said. While she felt “very grateful” to receive a diagnosis relatively quickly, her medical complications were far from over. Between February and August 2024, she suffered 35 UTIs before being hospitalized with sepsis, a potentially fatal bodily response to infection.
She subsequently switched to a supra pubic catheter, with the tube exiting her bladder through her lower abdomen. An attempt to treat her condition using a special electronic device to send signals to her bladder muscle proved unsuccessful. She has since joined a waiting list for an eight-hour operation that would place a tube from her appendix so her urine exits through her belly button.
Francis described the upcoming procedure as “really exciting” but “scary” at the same time, adding that her life feels “on hold” because of the lengthy wait list. She emphasized how “mentally debilitating” the condition is for a woman her age, and how “humiliating and degrading it is” given “there’s no awareness of it.”
“I’m very young to have problems with my bladder, and, although it happens to young people more often than we think, it’s not talked about very much,” she added.
The social and emotional toll has been severe. Francis noted that she has not been able to “go on dates or anything” because her confidence “plummeted.” She has found herself afraid of intimacy because of the tube coming out of her body.
“People say I do so well with this, but they don’t see how much I struggle with it,” she continued. “I wish urinary retention was more widely discussed and known about. We talk about incontinence but not retention, I think that’s why people feel shame and embarrassment around it.”
She appealed for a “huge study” involving all patients with Fowler’s syndrome to help researchers understand why the condition develops.
“When you hear the word ‘catheter’ you don’t think of people like me, but this can happen to someone of any age,” she said. “It’s heart-breaking to be my age and so afraid of intimacy because you have a tube coming out of you.”
Francis remains on the waiting list for her surgical procedure.