A woman who was unable to wee for almost five years due to a rare condition claims she was told to "sit in the bathroom and run the tap" by doctors. Rachel Ingrim, 31, was diagnosed with Fowler's syndrome - urinary retention or inability to pass water normally - in April 2015, years after giving birth.
She had 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. She was seen urgently in hospital and says doctors told her she had two litres of urine in her bladder. Women's bladders are usually able to hold up to 500ml and men's 700ml.
Rachel claims she looked "six months pregnant" due to the build-up of fluid and says she was in "absolute agony". Rachel claims one doctor even suggested she listen to a dripping tap to try and encourage her to wee.
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 five years before finally being diagnosed with Fowler's syndrome in April 2015. In May 2015, Rachel had a sacral nerve stimulator fitted - A sacral neuromodulator is a pacemaker device implanted into the body. Instead of stimulating the heart, it controls better urination.
But after a fall which dislodged the device, Rachel was back to square one and unable to see again. After a major operation to remove the pacemaker, Rachel had a Mitrofanoff -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 - fitted in March 2019 and says her life is now "complete".
Rachel, a teaching assistant, said: "The doctors didn't know what was wrong with me they hadn't seen it before. I was able to pass some urine, but I could not empty my bladder.
"I woke up one day and was in absolute agony, I looked six months pregnant. I couldn't pass any urine at all.
"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."
After giving birth to her second child and being unable to empty her bladder, Rachel took herself to the hospital where they found two litres of urine in her bladder. Doctors emptied Rachel's bladder and sent her home.
Feeling "fobbed off", Rachel claims hospital staff even told her she was "too young" to have bladder issues. After five hours at home - still in pain - Rachel found herself in the same situation as before and headed back to the hospital.
She said: "The nurse ended up catheterising me and left it in so I could wee. They told me that they would speak to urology and get back to me.
"I was seen by a urologist within a couple of weeks after going private. I was told I would have to wait years for an appointment on the NHS."
Fowler's Syndrome UK explains that only 30 per cent of GPs are aware of the condition - meaning a diagnosis can take years. After seeing a urologist, Rachel was diagnosed with Fowler's syndrome in April 2015 - three years after originally experiencing symptoms.
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."
According to Fowlers Syndrome UK, 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.
She said: "Initially after the operation, the first six months were hell. 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."
Now, Rachel is using her experience with the disease to support other women living with Fowler's Syndrome. She said: "When Dani - Fowler's Syndrome UK CEO - contacted me before the charity was registered, it was a no-brainer for me as I knew how desperate I was for help and support.
"Having the charity has been a life support for people."
For more information on Fowlers Syndrome, you can visit www.fowlerssyndrome.co.uk
