A young mum unable to urinate for almost five years since the birth of her daughter has revealed the agony of Fowler’s Syndrome in a bid to raise awareness about this devastating ‘hidden disease’.
Rachel Ingram, 26, was “perfectly healthy” before the birth of her second child, daughter Isla, who is now 5.
“Life was amazing! I was a young mum, pregnant again and in love with my partner and our little boy Harvey who is now 7,” she said.
“We had recently bought a house, we both enjoyed our jobs and worked hard.”
But their dream life started to crumble when Rachel was induced five days early after she became unwell while pregnant with Isla.
Her body stopped contracting and the baby had to be pulled out in an emergency delivery.
“From the day she was born I had trouble passing urine,” Rachel, who is from Ashford, Kent, said.
“I started getting urine infections, lots of lower abdominal pain and less sensation of knowing when my bladder was full.
“Disaster struck one day when I was sat on the toilet.
“I was screaming in agony for two hours trying to pass urine.
It was similar to being in labour, I was rolling around with the pain.
“It was horrendous and my stomach was so swollen I looked about six months pregnant.”
Her mother rushed her to A&E where she claims doctors told her that she was a healthy 20-year-old and she only had a urinary tract infection.
“I was writhing and rolling around in pain and nobody seemed to do anything about it,” she said.
“My mum demanded that someone scanned me immediately and when they did they were horrified to find I had more than 2 litres in my bladder.
“I was catheterised and rushed by ambulance to another hospital where I had emergency surgery that day.”
Rachel’s symptoms have continued ever since, including a complete inability to pass urine, persistent UTIs, horrible bladder spasms and near constant pain.
Her condition has got so bad that she suffered sepsis – a potentially fatal blood poisoning – twice in the last 18 months.
Now every morning she wakes up in pain and she has to take tablets to dampen the agony enough just to get out of bed.
Her husband then helps her to the toilet where they empty her urine through the tube which sticks out of her stomach.
She had a bladder pacemaker fitted at the base of her spine which aimed to shock the bladder into working, but it failed and complications from this surgery damaged nerves in her leg so she now cannot walk without a crutch.
She has passed out from the pain of kidney stones – kidney damage being another danger with Fowler’s – and she has to take antibiotics every day to keep infection at bay.
The side effects of the myriad tablets she takes are frightening, she says.
Illness forced Rachel to quit the job she loved and her husband had to reduce to part-time at work so he can take their children to school.
“It’s been really hard for our relationship because you’re always in pain, or away in hospital or knocked out from medication.
“I’ve told him to leave me countless times because he’d be better off with someone else.
“When you’re in such severe pain you don’t know what to do with yourself. Sometimes I snap at him but it’s the pain that makes me snap.
“But he says he’s not leaving and he’s still here because he wants to be with me.
‘He has been so supportive and understanding. He’s had to go through it all with me.
“And now he has to run the house, mind a family and work. It’s hard for him and I feel guilty about that.
“I feel really lazy being at home doing nothing but looking at screens and taking painkillers.
“But I try to keep busy on the computer from bed or the couch.”
When Rachel feels well enough, she volunteers at her children’s school which she said gives her a purpose.
She is now waiting for Mitrofanoff surgery – which will create a channel from her bladder to her bellybutton using her appendix – which she hopes will be her ticket back to a normal life.
“The surgery should reduce the infections and pain and give me my life back. But the thought of being a mum with two young children and having life changing major surgery is very scary.”
She was told that she could be waiting 12 months for the surgery with the NHS but she could cut the queue if she paid £20,000 to have the procedure privately.
“People have suggested fundraising for this but I know so many people with Fowler’s who desperately need the operation too, why should my need be greater than theirs? I would not feel right taking other people’s money. I have felt so desperate at so many times, why would this time be any different?”
She said that her predicament has been made much worse by the fact that many medics are unaware of what Fowler’s Syndrome is and she has repeatedly been told that this hugely debilitating illness ‘is all in her head.”
On one agonsing visit to A&E when she was desperate for help, one doctor patronisingly told her that if she kept popping pills she would be dead by 30.
But she said educated medics make a huge difference to sufferers.
What is Fowler’s Syndrome?
First described in 1985, Fowler’s Syndrome is a cause of urinary retention (inability to pass water normally) in young women.
It currently affects around one in one million women in the UK – mostly aged in their 20s and 30s.
The problem occurs when the urethral sphincter (the muscle that keeps you continent) does not relax to allow urine to be passed normally.
Some patients can pass a little urine with difficulty but others are unable to pass any. Sufferers may need their bladders to be drained through a catheter.
Some women may experience back pain, suprapubic pain (pain over the bladder) or dysuria (discomfort/burning whilst passing urine) due urinary infections.
There is no neurological disorder associated with the condition.
Up to half the women have associated polycystic ovaries.
Source: University College London
Paramedics were often called to her house after she fell and her husband could not move her.
When they had Googled Fowler’s Syndrome on route that two minute read made their treatment far more effective, she said.
Despite her trauma she tries to stay positive and looks for the silver linings in life.
She has learned to make pretty covers for her catheter bags so people cannot see the urine inside them and she relishes the time she spends helping her children with homework.
And she draws great courage and happiness from new friends she has made through the Fowler’s Syndrome Support FSS Facebook group who she says are all exceptionally inspiring women.
She stumbled on the group online and it has proved to be a lifeline throughout her darker moments and she is now the group administrator.
“The group saved me. They’re like family. You get to know each other so well.
“Although it’s very lonely living this life, and very scary at times, there is always someone online that can be there to support you which is incredible,” she said.
And Rachel is now fighting to raise awareness about Fowler’s Syndrome so medical staff can treat sufferers appropriately.
“This is an illness that is invisible, but very real. Too many people are having bad experiences in hospital because medics don’t understand this complicated health problem.
“Fowlers has taken lots away from me. It has taken away my energy, my ability to work a job that I loved, my good health, a lot of friendships and most importantly it has taken away the wife my husband married and the mum that my children deserve.
“I miss out on a lot of things, but my children miss out on a lot more – which is heartbreaking.
“Fowler’s has turned my life upside down but you can fight it and live the happy life you want and deserve.
“We have Fowler’s but we also have a voice and we deserve to be heard.
“And we deserve to fight Fowlers with the support of medical professionals rather than them not understanding and not caring.”
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