I haven’t peed in SIX YEARS and never will again – I live in constant agony and it could kill me
A WOMAN hasn’t had a wee for SIX YEARS after she was struck with a rare condition overnight.
Anna Gray spent three months in agony before she was finally diagnosed with Fowler’s Syndrome, which stops the bladder emptying.
The 27-year-old first noticed symptoms in November 2018 when she ended up hospitalised with a kidney infection after not being able to pee for days.
Weeks later, she was still having trouble going to the toilet and had two litres of urine drained from her bladder.
Anna claims she was “fobbed off doctors” – who, she says, urged her to simply ”keep trying” at home.
She landed back in hospital on Boxing Day 2018, when medics finally ran tests and discovered she had no activity in her bladder – meaning the brain had “stopped communicating” with the organ.
Anna was shocked to discover there was “nothing more” doctors could do, and she would never be able to wee “naturally” again.
She was eventually fitted with a permanent catheter – a tube inserted into the bladder to drain urine – and she empties the bag attached several times a day.
Anna, from Salisbury, Wiltshire, is now discussing the next steps with her pain management team, and is hoping to raise awareness around the rare condition.
Anna, who is currently unable to work due to her illness, said: “It’s had a massive impact of every area of my life.
“Last year I was predominantly housebound – it’s affected me seeing friends or dating.
“Talking about going to the toilet is still very taboo – especially amongst women.
“Hopefully by speaking out I can help others.”
Anna had never experienced any ill health before she woke up in November 2018 unable to wee.
She ended up hospitalised and doctors inserted a temporary catheter to help relieve her bladder – suspecting a kidney infection was the cause.
Anna hoped the issue was sorted, until she was struck by the same condition again in December 2018.
“At first, when I couldn’t wee in the morning, I thought maybe I just didn’t need to go,” she said.
“But as the day trudged on, I thought, ‘This isn’t right. Things like this don’t happen to people my age.’
“The GP said to ‘keep trying’ and turn on the tap to help me go.
“I was in a lot of pain and there was some miscommunication when they prescribed me laxatives – which did nothing to help.”
I developed sepsis and deteriorated massively. I remember thinking I was dying
Anna Gray
Over the next two months, Anna had multiple trips to the hospital, where, each time, medics had to relieve her bladder with a catheter.
She pushed for more tests and was finally diagnosed with Fowler’s Syndrome in February 2019.
After diagnosing the lack of activity, doctors revealed her bladder would “never work normally again”.
Anna said: “I was told there was nothing they could do and I would need a catheter for life.
“I think I went through a process of grieving to begin with, because it was so unknown.
“But it was a relief to know that it wasn’t all in my head.”
The condition solely affects women and is characterised by the difficulty or inability to pass urine due to the bladder’s sphincter muscle’s failure to relax.
The cause is still unknown, but it often develops after childbirth or surgery.
Anna was taught how to self catheterise five times a day in order to relieve her bladder manually.
But after numerous infections, she was fitted with a more permanent system called a suprapubic catheter in 2020.
It is a tube inserted directly in the bladder through her tummy and attached to a bag, which Anna empties several times a day.
Despite struggling with her mental health at first, Anna has found more confidence.
She said: “Accepting it was a life-long condition was a lot to get my head around and I was in hospital for my mental health last year.
“But I’m slowly getting there, and now I’m used to the bag.
“I’ll wear shorts and tops where you can see it – it doesn’t bother me anymore.
“People ask questions and I’m fine with that.”
What is Fowler's Syndrome?
Fowler's Syndrome was first identified by Professor Clare J Fowler.
It describes difficulty in passing urine and urinary retention due to the bladder’s sphincter muscle failing to relax.
Fowler’s typically affects younger women in their 20s and 30s, up to half of whom have polycystic ovaries, according to Bladder Health UK.
The severity of symptoms varies from person to person.
Some experience complete retention while others struggle to pass urine, with a residual amount left in the bladder.
Frequent urinary infections may be a problem for people suffering from Fowler’s Syndrome due to the bladder not emptying properly.
Others may also experience back, kidney and lower-abdomen pain, together with blood in the urine. Bladder spasms may also be an issue.
Those suffering from Fowler’s Syndrome are at an increased risk of sepsis due to infections they suffer.
They are also at risk of developing antibiotic resistance due to the frequency with which they need antibiotics.
Source: Bladder Health UK
Anna ended up in hospital in January 2024 when she developed sepsis in her tummy where the tube is inserted.
She was in intensive care for three weeks before she was discharged.
“I still have lots of issues due to the condition,” she said.
“I developed sepsis and deteriorated massively. I remember thinking I was dying.
“Luckily, I was already in hospital and they caught it in time.”
Sepsis occurs when the body responds improperly to an infection. It kills around 48,000 people every year in the UK alone.
Anna underwent a clinical trial in 2020 for a sacral nerve stimulation pacemaker – a device that sends signals from the brain which control urination.
Unfortunately, her bladder function was “too low” to continue the study.
For now, Anna has found comfort and support with fellow sufferers online.
She said: “At first I thought I must be the only person in the world who was going through something like this; it’s so isolating to be in that position.
“But finding a community of people who understand it has been incredible.”
Who gets sepsis and what causes it?
Sepsis can affect anyone. The condition occurs when the body’s immune system has an overeaction to an infection.
As a result, the body attacks itself.
Some people are more likely to get an infection that could lead to sepsis, however.
This includes babies under the age of one, people over 75 years old, people with diabetes or a weak immune system (either due to treatment, a condition or genetically), people who have recently had surgery or given birth.
Any infection can lead to sepsis. But those more likely to are those of:
- Lungs, such as pneumonia.
- Kidney, bladder and other parts of the urinary system
- Digestive system
- Bloodstream
- Catheter sites
- Wounds or burns