A woman has revealed how she was unable to wee for almost five years due to a rare condition.
Rachel Ingrim, 31, a teaching assistant from Ashford, Kent, was diagnosed with Fowler's Syndrome - urinary retention or inability to pass water normally - in April 2015.
She had given birth to her daughter, Isla - her second child - in October 2012 and hours after labour realised she was unable to pass urine no matter how much she drank.
Having been examined in hospital, doctors told her she had two litres (2000ml) of urine in her bladder. Women's bladders are usually able to hold up to 500ml and men's 700ml.
Ingrim says she looked "six months pregnant" due to the build-up of fluid and describes being in "absolute agony".
"I was able to pass some urine, but I could not empty my bladder," she says.
She was fitted with a catheter - a flexible tube used to empty the bladder and collect urine in a drainage bag, which she used for almost three years before her diagnosis in April 2015.
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Fowler's Syndrome Diagnosis
Speaking of that three-year period Ingrim says: "I had been told about various things that could be wrong with me. I was told I might have MS (multiple sclerosis), that it might be a problem with my spine - I was given all sorts of tests."
When she was finally diagnosed with Fowler's Syndrome, Ingrim says she remembers crying. "To finally have an answer was such a relief," she explains. "I could move forward with my life."
In May 2015, a month after her diagnosis, Rachel had a sacral nerve stimulator fitted.
Sacral nerve stimulation delivers gentle electrical impulses through a probe – a thin wire – that is placed near the sacral nerve (in the pelvis).
Similar to a pacemaker but instead of stimulating a heartbeat it stimulates bowel muscles, so they work normally.
But after a fall dislodged the device, Ingrim, was back to square one and unable to pee again.
The road to recovery
After a major operation to remove the pacemaker, in March 2019, she had a Mitrofanoff fitted, which uses part of the appendix to form a channel between the bladder and tummy skin. The patient passes a catheter through the channel to drain urine.
Ingrim describes the months after as "hell". She recalls: "I was so poorly, I ended up with a blood clot in my leg, and multiple different chest infections, my body was so weak and run down - I didn't think I would get better."
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Now, however Ingrim says she has been "given her life back".
"It is completely different," she says. "I am back at work and have trained to be a teaching assistant and have started going gym. Don't get me wrong it is not completely problem-free, and I still have the odd bump in the road."
Ingrim now hopes to support other women living with Fowler's Syndrome by working with the charity Fowler's Syndrome UK.
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A fellow Fowler's Syndrome sufferer
Ingrim isn't the only one to share their experience in order to raise awareness about the condition.
Elle Adams, 30, a content creator from Bow, east London shared how she woke up one morning in October 2020 and found herself unable to urinate.
Doctors discovered Adams had one litre of urine in her bladder and fitted her with an emergency catheter.
Following a period of 14 months where she was unable to wee normally, and many tests, Adams was finally diagnosed with Fowler's Syndrome in December 2021.
The diagnosis means Adams will have to urinate using a catheter for the rest of her life.
"I was extremely healthy. I had no other problems," she explains of her health before. "I woke up one day and I wasn't able to wee. I was very concerned that I wasn't able to complete a simple task like go to the toilet."
Adams describes feeling at "breaking point" before her diagnosis, explaining that being unable to go to the toilet had "completely changed" her life.
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Like Ingrim, Adams also underwent sacral nerve stimulation in January 2023 and says the procedure to fit the mechanism has made her life easier.
"I couldn't have imagined continuing the way I was living before," she explains. "It was so draining, and it took up my life.
"Now I can pee on my own, I have cut down my self-catheterisation a lot. It is still difficult, but it is much better than it was."
Additional reporting SWNS.