Model’s agony as condition leaves her unable to urinate
POSING for the camera, Leanne Ward’s striking modelling shots are hiding an alarming secret.
For more than two years, she has been unable to urinate after being struck down by a debilitating ailment which means her bladder muscles are unable to relax.
Bizarrely, having Botox injected into her sphincter muscle, which is part of the bladder, meant she could urinate for three months, the only time the 27-year-old has been able to do so since 2015.
“All this has had a huge impact on my life – I just want to be able to use the loo,” said Leanne, from Aberdare.
Leanne’s desperate predicament is caused by Fowler’s syndrome – a rare illness, typically affecting women in their 20s to 40s, causing intermittent or complete urine retention.
Her problems began after an unrelated operation in June 2015 for suspected appendicitis at the Royal Glamorgan Hospital, Llantrisant.
She said: “I was really ill. I started vomiting and had severe tummy ache.”
Rather than finding appendicitis, surgeons discovered blood near her pelvis, leading them to believe she had suffered a burst ovarian cyst.
After treatment, Leanne expected to make a full recovery – only to discover she urinate.
“I desperately needed to. I was bursting – but I just couldn’t physically go,” she said.
With doctors unwilling to discharge her until she had passed water, she was fitted with a temporary catheter – a flexible tube used to empty the bladder into a drainage bag – and taught how to insert it herself at home.
“Doing this was very painful,” she said. “I was so frightened, it was so painful having it put in.”
In November 2015, she was diagnosed with Fowler’s syndrome.
“I felt so relieved to have a reason for everything,” she said. “It was good to have answers. It was amazing. It wasn’t nice to have Fowler’s syndrome, but to have a direction as to where to go next was good.”
In January 2016, she was put forward by her consultant for a trial to have Botox injected into her urethral sphincters, the two muscles controlling the exit of urine in the urinary bladder, through the urethra.
The treatment – administered at the University Hospital of Wales in Cardiff, under general anaesthetic – made them relax, allowing her to pass water naturally.
“It was brilliant,” she said. “For three months – could not the best three months I’ve had since 2015 – I could wee.
“It was supposed to last for nine months but, even though it only lasted for three, it was really liberating.”
Sadly, as the treatment was short-lasting, it is not suitable for her again.
“It was so disappointing to learn I wasn’t having any more,” she said.
Fitted with a suprapubic catheter – which goes through her abdominal wall – Leanne now experiences daily pain, caused by the tube rubbing against her bladder.
She has nicknamed her catheter Percy. “You have to laugh about it,” she said. “Percy is the bane of my life, I hate him, he is my worst enemy.”
She also suffers regularly with kidney and bladder infections and is prone to urinary tract infections.
“It also really hurts whether my bladder is full or empty,” she said.
“It’s terrible. I take morphine for the pain and long for the day I can use the toilet normally.
“People don’t know that Fowler’s syndrome is a thing.
“But it is – and it’s serious. It’s so rare that often when I’ve visited the doctor’s or the hospital people haven’t heard of it. But it’s an extremely difficult thing to live with.”
This summer, Leanne will undergo surgeryto have a Mitrofanoff procedure.
This is when a urinary reservoir is fashioned from the bowel, so the person’s own bladder may be used as the reservoir.
She is hopeful this will reduce her pain and enable her to have a better quality of life.
“I want to be able to pass urine more easily,” she said.
“It won’t be naturally but hopefully more comfortably.”
Leanne and her friends are campaigning to raise awareness of the condition.
“We believe more research is needed as it was discovered more than 30 years ago,” she said.
“We don’t expect a cure, but we want advances in treatment and all healthcare professionals to be aware of it. This starts with awareness.”