Pollyanna Love hasn't been able to go to the toilet for the last five years after her bladder "nearly exploded".
Surgeons had no choice but to remove her bladder and fit a stoma bag after the 23-year-old was diagnosed with a rare condition, Fowlers Syndrome.
Pollyanna was just 18 when she had to undego the harrowing procedure because of her condition, which means the where the urethral sphincter – the muscle that keeps people continent – cannot relax, preventing normal urination.
Since the age of four Pollyanna had suffered from almost constant bladder infections and had to endure a burning sensation every time she went for a wee.
But five years ago the pain was so bad she couldn't pass water at all and A&E doctors had to drain three litres of urine from her bladder and she was diagnosed with Fowlers Syndrome.
In July last year, because Pollyanna was suffering from bladder spasms so painful she said it was like being in labour, doctors removed her organ.
She has been fitted with a stoma and has an attachable pouch to collect her waste.
Pollyanna, of Ilkeston, Derbyshire, who is unable to work because of her condition, 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."
Pollyanna was given antibiotics everytime she suffered a bladder infection but as soon as she stopped taking them the problem returned.
She said: "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."
Pollyanna tried everything to cure her symptoms, including cutting out certain foods, but nothing worked.
Then, aged 16, she “went into retention” for the first time, meaning she could not empty her bladder at all.
She said: "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."
But then in March 2018, while she was working in Boots head office, Pollyanna realised she couldn't remember the last time she had passed water.
She was also so bloated she "looked nine months pregnant".
Pollyanna said: "Once I realised 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."
At A&E a scan revealed how dangerously full her bladder was and medics inserted a catheter – to drain away three litres of urine.
This is six times as much as a fully functioning bladder can hold.
Pollyanna said: "My bladder was close to exploding. Nobody could understand why I hadn’t been able to wee."
Taught to self-catheterise by hospital staff Pollyanna found struggled with dealing with the issue.
She said: "My bladder would spasm and so sometimes clamp shut around the catheter itself, which was absolute agony."
Pollyanna had a raft of tests and was finally diagnosed with Fowlers Syndrome, which typically affects women in their 20s and 30s, in June 2014.
She said: "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. "
Pollyanna had a suprapubic catheter inserted into the bladder through a cut in the tummy.
It enabled her to drain away urine before it built up to a dangerous level but her spasms were still almost unbearable.
She was rushed to hospital again in September, 2014, after her family found her screaming on the floor.
Pollyanna said: "The only way I can describe it is that it felt like I was giving birth to my bladder.
"I was screaming and screaming. In that moment, I was ready to die, the pain was that bad.
"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 became too painful.
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 Pollyanna 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.
Pollyanna had 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 agonising spasms, said: “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.”
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