Woman diagnosed with rare condition has been unable to pee for two and a half years
A woman has opened up about her 'traumatic' experience being diagnosed with a condition which left her unable to urinate for two-and-a-half years.
In January, 2024, Evan Francis went to her GP with back pain and bloating and was given antibiotics for a UTI.
However, two weeks later, she returned to the practice, with the same symptoms, alongside not having urinated in two days. She was yet again told it was a UTI.
An ultrasound the following month revealed she still had 300ml in her bladder and she was referred to urology, but spent 36 'horrendous' hours unable to wee before her appointment.
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She told Sell Us Your Story she 'looked nine months pregnant' and felt dizzy and sick, so much so she went to hospital where a litre of urine was drained from her bladder, told she would have 'gone septic' if she'd waited any longer.
The 30-year-old had a catheter bag inserted, going home with a bag which collects her urine in it through the catheter tube, unable to leave the house for five days because of feeling insecure about the bag.
Two weeks later, the bag was removed, but the bloating began again.
A cystocopy in May 2024 - a camera ini her urethra - and two MRI scans in June, alongside urodynamics testing in July, finally revealed Evan had Fowler's syndrome.
What is Fowler's Syndrome?
Fowler's Syndrome is a condition that 'causes full or partial urinary retention and solely affects women' with the 'peak age of onset' 26 years old.
"The difficulty in passing urine lies in the urethral sphincter (the muscle that keeps you continent)," Fowler's Syndrome UK explains. "The problem is caused by the sphincter’s failure to relax to allow urine to be passed normally."
Evan was told she would need to be catheterised for life, which 'destroyed her mental health'.
While 'very grateful' to be diagnosed 'really quick,' Evan then struggled with 35 UTIs between February and August 2024 before being hospitalised with sepsis.
She switched to a supra pubic catheter, the tube coming out of her bladder and through her lower abdomen.
After trying a special electronic device to send signals to her bladder muscle to release urine which sadly didn't work, Evan has since joined a waiting list for an operation to place a tube from her appendix so her urine goes out her belly button.
Evan is raising awareness to make urinary retention 'more widely discussed and known about'
Evan reflected the eight-hour operation is 'really exciting' but 'scary' at the same time, alongside her life feeling 'on hold' given how long the wait list is.
She reflected on how 'mentally debilitating' the condition is for a woman her age, alongside 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, noting how she's not been able to 'go on dates or anything' given her confidence 'plummeting'.
"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."
Evan resolved: "When you hear the word ‘catheter’ you don’t think of people like me, but this can happen to someone of any age.
“It’s heart-breaking to be my age and so afraid of intimacy because you have a tube coming out of you."
She appealed for there to be a 'huge study' soon 'involving all the patients with Fowler's syndrome' to find out why it happens.
Topics: Health
Poppy Bilderbeck