I woke up one day and couldn’t pee at all – I looked six months pregnant and was in agony
A MUM-of-two was unable to wee for five years after the birth of her second child due to a rare condition.
But it took doctors years to identify it and she claims they told her “to sit in the bathroom and run the tap”.
Rachel Ingrim, 31, had her daughter, Isla – her second child – in October 2012.
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 said she looked “six months pregnant” due to the build-up of fluid and says she was in “absolute agony”.
She claims one doctor even suggested she listen to a dripping tap to try and encourage her to wee.
Rachel, a teaching assistant, from Ashford, Kent, 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.”
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 was fitted with a catheter – a flexible tube used to empty the bladder and collect urine in a drainage bag.
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.”
Rachel used the for almost three years.
It took her going private to be finally diagnosed with Fowler’s syndrome – urinary retention or inability to pass water normally – in April 2015.
“I was seen by a urologist within a couple of weeks after going private,” the mum recalled.
“I was told I would have to wait years for an appointment on the NHS.”
Rachel went on: “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.”
What is Fowler's Syndrome?
Fowler's Syndrome was first identified by Professor Clare J Fowler and 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 twenties and thirties, 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 Fowlers 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 Fowlers Syndrome are at an increased risk of sepsis due infections they suffer, and are also at risk of developing antibiotic resistance due to the frequency with which they need antibiotics.
Source: Bladder Health UK
In May that same year, Rachel had a sacral nerve stimulator fitted.
Also called a sacral neuromodulator, it’s a pacemaker device implanted into the body that, instead of stimulating the heart, controls better urination.
But after a fall which dislodged the device, Rachel was back to square one and unable to wee again.
After a major operation to remove the pacemaker, Rachel had a Mitrofanoff fitted in March 2019, in an operation that lasted four hours.
A Mitrofanoff is a tube created from 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.
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.”
But now Rachel says her life is “complete” following the procedure: “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.
“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.”
According to Fowler’s Syndrome UK, only 30 per cent of GPs are aware of the condition – meaning a diagnosis can take years.
It said 85 per cent of women with the disease report it having a severe or devastating impact on their life.
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.”