A mum who was unable to pee for five years and left in agonising pain with a rare condition was told by medics just to "run the tap". Rachel Ingram was diagnosed with Fowler's Syndrome in April 2015, almost three years after she first started experiencing issues following the birth of her second child, Isla.
Those who suffer from the condition cannot pass water normally - with Rachel finding she wasn't able to wee no matter how much she drank, the Mirror reports. After welcoming her Isla in October 2012, Rachel was left in "absolute agony" and taken to hospital.
Once there, doctors found she had two litres of urine in her bladder - four times the limit women can usually hold - with the build-up making her look "six months pregnant". However, instead of investigating whether there may be an underlying condition, one baffled doctor simply told Rachel to leave a tap running when she went to the toilet, in the hopes that the noise would make her need to go.
After emptying her bladder, doctors also told the teaching assistant that she was "too young" to have bladder problems and discharged her - only for her to return five hours later still in pain. In May 2015, Rachel had a sacral nerve stimulator implanted - a pacemaker device which controls urination.
However, the device became dislodged after she took a fall, leaving the mum unable to wee again and right back where she started. After a major surgery to remove the pacemaker, Rachel underwent a Mitrofanoff in March 2019.
The procedure involves using part of the appendix to form a channel between the bladder and tummy skin, with the patient then inserting a catheter into the channel to drain urine. Since the surgery, Rachel says her life has been transformed and she has been able to return to work.
"The doctors didn't know what was wrong with me they hadn't seen it before," Rachel said. "I was finally diagnosed with Fowler's syndrome in April 2015 - after going private.
"Now, my life is completely different - 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."
According to charity Fowler's Syndrome UK, only 30 per cent of GPs are aware of the condition - meaning patients can be waiting years for a diagnosis.
Rachel said: "I had been told of that three-year period of different things that could be wrong with me. I was told I might have MS - I was told it might be problems with my spine - I was given all sorts of tests.
"When I finally had the private appointment, I remember crying. The doctor asked me what was wrong, and I said how I finally felt listened to. To finally have an answer was such a relief that I could move forward with my life."
Fowler's Syndrome UK research also found that 85 per cent of women with the disease say the condition has had a severe or devastating impact on their life. Rachel had an operation to fit the permanent catheter in March 2019 which lasted four hours.
"Initially after the operation, the first six months were hell," she added. "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.
"It has given me my life back, I had no life, I didn't want to be here. I didn't think it was fair on my family but now they have got me back."
Fore more information on the condition, visit Fowler's Syndrome UK.
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