Woman reveals she hasn’t urinated in 6 years due to rare condition

By Maddison Rolfe

A woman hasn't gone pee for SIX YEARS after she was struck with a rare medication condition overnight.

Anna Gray, 27, spent three months in agony before she was finally diagnosed with Fowler's Syndrome - a rare condition that stops the bladder from emptying.

Anna first noticed symptoms in November 2018 when she ended up hospitalized 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 liters of urine drained from her bladder.

Anna claims she was "fobbed off doctors" - who, she says, urged her to ''keep trying'' to go to the bathroom at home.

She landed back in hospital on Boxing Day 2018, and doctors finally ran tests and discovered she had no activity in her bladder - meaning the brain "stopped communicating" with the organ.

Anna was shocked to discover there was "nothing more" doctors could do, and she would never be able to pee "naturally" again.

She was eventually fitted with a permanent catheter in her stomach - a tube inserted into the bladder to drain urine - and emptied the bag attached several times a day.

Anna is now discussing the next steps with her pain management team, and hoping to raise awareness around the rare condition.

Anna, who is currently unable to work due to her illness, from Sailsbury, Wiltshire, 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 woman.

"Hopefully by speaking out I can help others."

Anna had never experienced any ill health before she woke up in November 2018 unable to go pee.

She ended up hospitalized and doctors inserted a 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.

Anna said: "At first when I couldn't wee in the morning, I thought maybe I just didn't need to go.

"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."

Over the next two months, Anna had multiple trips to the hospital where they had to relieve her bladder with a catheter.

She pushed for more tests and was finally diagnosed with Fowler's Syndrome in February 2019.

Doctors discovered there was no activity in her bladder and revealed it would "never work normally again".

Anna said: "I was told there was nothing they could do and I would need to 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 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 can develop after childbirth or surgery.

Anna was taught how to self-catheterize 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 stomach 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."

Anna ended up in hospital in January 2024 when she developed the infection sepsis in her stomach where the tube is inserted.

She ended up in intensive care for three weeks, before she was she 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."

Anna underwent a clinical trial in 2020 for a sacral nerve stimulation pacemaker - a device that send signals from the brain that control urination.

Unfortunately, her bladder function was "too low" to continue the study.

For now, Anna has found comfort and support with fellow suffers 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."