A young woman who has been unable to urinate for five years has told of her terrifying 999 (the UK's version of 911) emergency, which saw her rushed to the hospital with her bladder “close to exploding" – forcing surgeons to remove it and fit a stoma bag.
Just 23 now, Pollyanna Love was blighted by near-constant bladder infections from the age of four, also experiencing a burning sensation when she tried to pass water.
Then, at age 18, finding herself in agony and unable to urinate at all, ER doctors drained three liters of urine from her bulging bladder, resulting in a diagnosis in June 2014 of Fowlers Syndrome, where the urethral sphincter – the muscle that keeps people continent – cannot relax, preventing normal urination.
And in July 2018, after living with bladder spasms so painful she has likened them to labor, the organ was surgically removed, leaving her with a stoma – an abdominal opening connecting to the urinary system, diverting waste out of the body where it is collected in an attachable pouch.
Pollyanna, of Ilkeston, Derbyshire, England, who is too sick to work, said: “I'd been dealing with bladder infections for as long as I could remember, even as young as about four or five years old. For years, I'd have that feeling of desperately needing the loo – but only be able to squeeze out a little dribble when I went.
“Then, aged 18, I suddenly stopped being able to wee all together. It was absolute agony and horrific to face something like that so young. I've had to grow up very quickly."
Already suffering repeat water infections in early childhood, each time she was given antibiotics by the doctor, which would work for a little while, only for her symptoms to return.
Recalling problems caused by her urgent need to use the toilet, she explained: “I'd have to wear incontinence pads to school. I felt disgusting and didn't tell anybody what was going on. It really affected my confidence.
“I constantly felt desperate for the loo, but I had absolutely no idea what was causing it. I thought I was just unlucky, and one of those people that are prone to infections like cystitis, which I know some girls are."
Over the years, she tried everything – even cutting out certain foods, like anything overly acidic, for fear it would irritate her bladder – to no avail.
Then, aged 16, she “went into retention" for the first time, meaning she could not empty her bladder at all.
She recalled: “I'd had quite a severe asthma attack, and literally couldn't wee afterwards. Doctors thought that it may be the trauma that had caused it, and eventually, I was able to urinate again. But over the next two years, I found myself being able to wee less and less."
Things reached a head in March 2014 when, aged 18, she was at work at Boots head office when she realized she could not remember the last time she passed water, by which point she was so bloated that she “looked nine months pregnant."
She explained: “Once I realized that I wasn't sure when I'd last had a wee, I panicked and downed a load of water, hoping to flush everything out.
“Looking back, it was the worst thing I could have done, as it was adding even more strain to my bladder – but at the time, I didn't know what was wrong with me. Soon afterwards, I began feeling really unwell. Eventually, I was sick, and my colleagues phoned an ambulance."
Raced to the ER, a scan revealed how dangerously full her bladder was, so medics inserted a catheter – a thin, flexible tube – before draining away three liters of urine, six times as much as the 500ml a normal adult bladder can comfortably hold, according to the NHS.
“My bladder was close to exploding," she added. “Nobody could understand why I hadn't been able to wee."
Taught to self-catheterize by hospital staff, so she could drain her urine away at home, Pollyanna found it to be fraught with difficulty.
She continued: “My bladder would spasm, and so sometimes clamp shut around the catheter itself, which was absolute agony."
Meanwhile, Pollyanna was put through countless tests, which eventually led to her official Fowlers Syndrome diagnosis in June 2014 – a condition which typically affects women in their 20s and 30s, but the cause of which, according to the Bladder and Bowel Community, remains unknown.
“In a way, it was almost a relief to be diagnosed, as I'd genuinely started to wonder if it was all in my head and whether my problem was psychological," she said.
Pollyanna had a suprapubic catheter inserted into the bladder through a cut in the tummy, a few inches below the navel.
It enabled her to drain away urine before it built up to a dangerous level, but her spasms were still almost unbearable – resulting in her being rushed to hospital in September 2014 after her family found her on the floor, screaming in pain.
“The only way I can describe it is that it felt like I was giving birth to my bladder," she said. “I was screaming and screaming. In that moment, I was ready to die, the pain was that bad. "
Pollyanna continued: “The nurses at hospital were lovely, but Fowlers is still so little-known, even in the medical community, that nobody was sure what to do with me.
“In the end, the only thing that helped calm the spasms was gas and air, as that would relax my body. But even then, they'd soon return once the effects wore off."
For the next few months, Pollyanna's life was blighted by Fowlers Syndrome, with her regularly having to return to hospital for gas and air when her spasms got too much.
Then, in December, medics mentioned they could perform an urostomy operation, to create a new exit route for urine via an opening in the abdomen, known as a stoma. Desperate to end her suffering, she went ahead with the six-hour operation in February 2015.
But her relief was short lived and, within about four months, she began to suffer with spasms once again – leading to a second round of surgery in July 2018, this time to remove her bladder completely.
Now, although the stoma bag is an effective solution, she feels self-conscious, especially if it leaks, or is visible under her clothes. And she suffers with kidney pain, where the organs have been left scarred and damaged by the repeated infections.
Bravely speaking out to raise awareness of Fowlers Syndrome, Pollyanna, who says her drastic surgery was “the best decision she has ever made," as it has freed her from the agonizing spasms, concluded: “I want people to know that urinary retention isn't normal.
“If you can't wee, if you keep getting infections, then you need help right away.
“It may not be Fowlers Syndrome, but it's better to get it seen to before it gets any worse. Far too few people have heard of the condition, so I'm determined to do all I can to raise awareness."
