21-year-old with Fowler’s syndrome may face bladder removal after misdiagnoses

Caris Gibson, a 21-year-old from Oxfordshire, England, may lose her bladder after doctors repeatedly misdiagnosed her symptoms, The Independent reported; she first began noticing problems in February 2024. Gibson said she was often unable to urinate and experienced intense pain, at times needing to sit in a bath to try to pass urine.

She told The Independent she visited the emergency room “pretty much every week from January to March 2024” before a general practitioner referred her to urology. After testing, doctors found Gibson’s bladder had swollen to almost two and a half times a normal size from constant urine retention and that she typically retained more urine even after voiding.

She was taught self-catheterization but could not fully insert the catheter because of a tight urethra, and a permanent catheter led to more infections; she later chose a suprapubic catheter but continued to have chronic infections. In November, Gibson was diagnosed with Fowler’s syndrome, a rare condition the NIH says causes the urethra to tense and contract and commonly affects women in their 20s and 30s.

Gibson said the diagnosis has not eased her pain or daily discomfort and described unpredictable flare-ups that leave her in pain and with catheter problems. Gibson told reporters she is now resistant to several antibiotics after taking many since her symptoms began, and she is on an NHS waitlist for a specialist consultation that may not be scheduled until April or later.

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