A mum-of-two has revealed how her life changed completely after she suddenly lost the ability to urinate naturally, leaving doctors unable to identify the exact cause five years later.
Kirstie Scothern, 29, from Nottingham, England, was rushed to hospital in April 2021 after noticing that her stomach had become unusually swollen.
Doctors discovered that a remarkable 2.5 litres of urine had accumulated in her bladder.
Despite undergoing numerous medical tests and treatments since then, Kirstie says she still cannot empty her bladder normally.
Her condition has forced her to adapt to a strict daily routine, while also dealing with the emotional and practical challenges of living with an unexplained medical problem.
How does Kirstie Scothern get rid of urine if she can't pee?
Kirstie uses a medical procedure called intermittent self-catheterisation to empty her bladder, inserting a small, flexible tube through her urethra to allow urine to drain directly into the toilet.
Because she cannot urinate naturally, the procedure is essential for removing urine that would otherwise continue accumulating in her bladder.
She sets an alarm every four hours to remind herself to empty it, as she generally only experiences the sensation of needing to urinate when her bladder becomes extremely full.
Unlike someone who can simply use the toilet whenever they feel the urge, Kirstie must plan around the equipment and time needed to complete the procedure.
She initially found self-catheterisation extremely difficult and painful.
Speaking about learning the technique, she explained that locating the urethra and inserting the small tube was particularly challenging.
However, she has gradually adapted and now uses the tubes to drain her bladder directly into the toilet rather than relying on a collection bag.
The process allows her body to remove urine even though the normal bladder-emptying mechanism is not functioning properly.
What happened when Kirstie first realised something was wrong?
Kirstie's symptoms began in April 2021 when she developed a migraine.
She subsequently realised she had not urinated since the previous evening, despite drinking plenty of water.
She even tried running the tap in an attempt to encourage urination, but nothing worked.
As her abdomen became increasingly swollen, her husband Justin, now 33, called an ambulance.
Kirstie was taken to Queen's Medical Centre in Nottingham, where medical staff discovered the significant volume of urine trapped inside her bladder.
They drained approximately 2.5 litres, far more than the amount a typical adult bladder comfortably holds.
Doctors investigated whether her migraine could be connected to the problem, including performing an MRI scan of her head.
However, they concluded that the migraine was not responsible.
Why couldn't she urinate after leaving hospital?
Following her initial treatment, Kirstie was discharged with a catheter connected to a drainage bag.
Two weeks later, doctors removed the catheter to see whether her bladder function had returned.
Unfortunately, she remained unable to urinate naturally.
That marked the beginning of years of medical appointments and investigations as specialists attempted to identify the cause of her urinary retention.
Although doctors explored several possibilities, Kirstie says they have not reached a confirmed diagnosis.
What is Fowler's syndrome?
Kirstie believes she may have a rare condition known as Fowler's syndrome, although doctors have not confirmed that diagnosis in her case.
Fowler's syndrome is associated with difficulty emptying the bladder, particularly among younger women.
It involves abnormal functioning of the urethral sphincter, the muscle that helps control the release of urine from the bladder.
When the muscle does not relax appropriately, urine can become trapped even when the bladder is full.
The condition can lead to substantial urinary retention and may require catheterisation or other specialist treatment.
Kirstie believes the relative rarity of Fowler's syndrome may contribute to the difficulty of obtaining a diagnosis.
However, other conditions can also cause urinary retention, meaning specialist assessment is necessary before identifying the underlying cause.
What treatments have doctors tried?
Over the past five years, Kirstie has undergone several investigations and attempted treatments.
Doctors initially considered whether medication she had been taking for migraines could be contributing to her urinary retention.
She stopped taking the medication under medical guidance, but her bladder function did not improve.
Specialists also attempted Botox treatment designed to relax the relevant muscles and potentially make urination easier.
Unfortunately, Kirstie said the treatment was unsuccessful.
Further investigations included CT scans and urodynamic testing, which assesses how the bladder and urinary system store and release urine.
Despite these efforts, the cause of her condition remains uncertain.
Could a bladder pacemaker help?
Some people with certain forms of urinary retention, including Fowler's syndrome, may benefit from a treatment called sacral neuromodulation.
Sometimes described as a bladder pacemaker, it involves implanting a device that delivers electrical stimulation to nerves involved in bladder control.
The system can be adjusted using an external controller.
For suitable patients, the treatment may help restore more effective bladder emptying.
However, it does not work for everyone, and whether someone is suitable depends on their diagnosis and specialist assessment.
The reporting does not establish that Kirstie has received this treatment or that it would necessarily resolve her symptoms.
How has the condition affected her everyday life?
Living with urinary retention has presented numerous practical and emotional difficulties for Kirstie.
Before learning to use intermittent catheters, she relied on a drainage bag that she had to carry with her.
She recalled experiencing leaks on two occasions, including once at work and another time while travelling in a colleague's car.
Both incidents left her feeling embarrassed and upset.
Even after switching to intermittent self-catheterisation, she has faced challenges accessing suitable toilets when away from home.
She carries a RADAR key, which can provide access to certain accessible toilets in the UK, along with a 'Can't Wait' card explaining her need for urgent toilet access.
However, she says some people have still refused to let her move ahead in toilet queues.
She described how difficult it can be to explain her situation to strangers, particularly when the condition is not outwardly visible.
What are the dangers of being unable to empty your bladder?
Urinary retention can become medically serious if urine continues building up without being drained.
An excessively full bladder can cause pain, stretching and potentially damage to the urinary system.
In some cases, prolonged retention can affect the kidneys or increase the risk of urinary tract infections.
Catheterisation allows urine to be removed when normal bladder emptying is not possible, but it also requires appropriate hygiene and medical guidance to minimise complications.
Anyone who suddenly becomes unable to urinate, particularly with lower abdominal pain or swelling, should seek urgent medical attention.
Acute urinary retention should not be managed by simply waiting for symptoms to improve.
What does Kirstie want others to know?
Despite the challenges, Kirstie says she has found encouragement through online communities where people share experiences of urinary retention and related conditions.
She has connected with others through Facebook and Instagram, finding reassurance that she is not the only person facing these difficulties.
Although she remains frustrated by the absence of a confirmed diagnosis, she hopes sharing her story will help others feel less isolated.
She also wants people to understand that not every disability or medical condition is immediately visible.
For Kirstie, accessing a toilet is not always a straightforward task, and small acts of understanding from others can make a significant difference.
Five years after her symptoms first appeared, she continues to manage her condition while hoping doctors will eventually provide answers.
Her message to others experiencing similar problems is that adapting takes time, but life can become more manageable with support and the right equipment.
Source: UNILAD, Thomas Bamford, October 27, 2026, based on Kirstie Scothern's account reported by SWNS.
