UN-PEE-LIEVABLE
I haven’t peed for 8 YEARS, it’s agony and could kill me – my stomach bulges like it’s about to burst but I can’t go
Find out more about Tia's ultra-rare condition that predominantly affects women
A WOMAN has been unable to pee naturally for eight years due to a rare condition.
Tia Castle, 31, hadn’t been to the toilet in days when her stomach began to uncomfortably swell.
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Quickly, the pain became “unbearable” and unaware of what was going on, she rushed to the hospital.
While there, she was told she had developed sepsis in her urinary tract due to a shocking two litres of water being retained in her body – with no release.
Facing a high risk of the infection worsening, the former care home worker had to manually make herself go to the toilet each day for the next nine months using a catheter.
Since then, she’s been diagnosed with a rare condition known as Fowler’s syndrome – and hasn’t been able to wee naturally for eight years.
Read more on Fowler's syndrome
“I was in complete agonising pain, but no matter how hard I tried, I just couldn’t go to the toilet,” Tia, from Glasgow, Scotland, said.
“I drank so much water to try and force my body to release some of the retention – but this only kept building up.
“In the last eight years, I haven’t passed a drop of urine naturally.
“And it’s left me devastated and feeling fed up to know my life is on the line regularly because of this.
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“Had I not gone to the hospital when I did, who knows if I would still be here today?
“It’s all come as a real shock, as I never have the urge to go to the toilet, yet my stomach bulges like it’s about to burst.
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“I have missed out on so much and had everything I once knew taken away from me.
“There’s still so much I want to do in life, but right now, that seems impossible.”
Growing up, Tia had dealt with several urinary tract and kidney infections, to the point her right kidney had to be removed.
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She also suffered frequently with loss of sensation in her bladder and “intense” bladder spams, which wrecked her sleep.
Tia was “losing hope” until a friend brought up Fowler’s syndrome, noting that her symptoms could be signs of it.
In 2016, she visited her doctors, who referred her to urology for further testing – but before her appointment, she was admitted to hospital with sepsis.
She then had to undergo numerous surgeries in order to be fitted with permanent catheters across her body, as peeing naturally for harder and harder to do.
I’m unable to enjoy life, as most of it has been spent fighting for it
Tia Castle
Left practically housebound, she sought out an official diagnosis; and in 2017, this was confirmed.
Fowler’s syndrome, which was only discovered in 1985, makes it difficult to pass urine, leading to retention and increased risk of infection.
It's caused by the sphincter muscle in the bladder being unable to relax.
It affects two in every one million women, according to Clinisupplies, who specialise in bladder and bowel products.
Symptoms of Fowler's Syndrome
Fowler's Syndrome was first described by Professor Clare J Fowler in 1985.
It refers to consists of difficulty in passing urine and urinary retention due to the bladder's sphincter muscle's failure to relax.
It typically affects younger women in their twenties and thirties who infrequently pass urine with an intermittent stream.
Though most people have an urgent need to pee if they have a full bladder, this feeling is absent in absent in those with Fowler's syndrome even though their bladder is full to capacity.
This can result in a lot of pain and discomfort.
Often patients will need to go to A&E to have their bladder drained via a catheter.
The severity of symptoms varies from person to person.
Some women experience complete retention while others have difficulty passing urine, with a residual amount left in the bladder.
Frequent urinary infections may be a problem for women suffering from Fowlers Syndrome due to the bladder not emptying properly.
Some women may also experience back, kidney and suprapubic pain, together with blood in the urine.
Bladder spasms may also be an issue.
Women with Fowlers Syndrome are at an increased risk of sepsis due to the infections they suffer.
They are also at risk of developing antibiotic resistance due to frequently needing antibiotics.
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While relieved to finally have an answer, Tia was “devastated” to learn that her condition was incurable.
She said: “I was so scared, as I didn’t know what was next for me – and if I’d ever get help.
“Doctors tried various treatments, including wires inserted into the base of my spine to stimulate the nerves in my bladder.
“I was even offered surgery to remove part of my bladder, so that a new path would be created for the urine to flow.
“But sadly, nothing worked.
“Each day was filled with a constant dread of the excruciating pain washing over me.
“My whole life was put on hold, as I was left bed bound and still with chronic infections.
“As I was so young, and my condition is so rare, I felt isolated, because there was no one to turn to.”
'You're not alone'
Then, in May 2022, she decided enough was enough.
Tia made the brave, life-changing decision to have her bladder removed entirely and have a stoma fitted.
Now, although she’s still struggling with constant “out of control” infections – and is developing resistance to antibiotics, making them harder to treat – it’s granted her a “new lease of life”.
Currently, there are experimental vaccine trials available, which she has just started, alongside receiving support from the Fowler’s Syndrome UK charity.
For now, though, she’s thankful to be alive and sharing her story to warn others.
She added: “I’m unable to enjoy life, as most of it has been spent fighting for it.
“I just wish I was well enough to leave the house.
“Right now, I am very stressed, pretty poorly, doing my best to stay out of hospital – and bored out of my mind, as I’ve been stuck on bed rest.
“But I’m hopeful these experimental vaccines will work, as this is my last option.
“Now, I want to get some items on my bucket list ticked off while I’m still able to do so.
“Even though I have no bladder and one kidney with dropping function, I am so desperate [to make memories].
“I want to tell my story, so anyone else with Fowler’s Syndrome knows they are not alone.
“There are so many [people] out there struggling, so if I can help one person, I’ll be happy.
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“And for those with stoma; remember, there’s nothing to be ashamed of.
“It’s the only reason I’m still alive today.”
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