A 23-year-old woman has been unable to urinate for three years after being struck down by a bizarre condition.
Black, from Barrow-in-Furness, suffers from Fowler’s syndrome, also
known as urine retention. It leaves her bladder muscles unable to relax.
While most people take popping to the toilets for granted, she constantly thinks about it – because she simply cannot.
Black, who has been unable to go to the toilet naturally since October
2014, initially thought she was suffering from a bout of cystitis.
is now hoping to undergo pioneering surgery to have tiny electrical
pulses implanted on her tail bone to trigger the nerves which work her
Opening up about her struggle to urinate for the first time, Miss Black said: ‘It’s changed my life so much.
‘I’m in and out of hospital and can’t do something as simple as wee. [Surgery] is my last hope. I’m desperate to go to the loo.’
The problems started back in late 2014, when the environmental health engineer began struggling to urinate.
Over the course of a few days, her symptoms worsened until eventually, she couldn’t go to the toilet at all.
top of this, her stomach swelled dramatically. She said that she looked
’20 weeks pregnant’. Miss Black added: ‘I was bursting. I knew I needed
to go, I just couldn’t.’
Her father, Steve, 52, raced her to the
nearby Furness General Hospital. She was given an emergency catheter to
drain away 1200mls of urine.
Doctors told her that the bladder is only designed to hold a maximum amount of around 500ml urine.
The relief was immediate, and Miss Black was hopeful she’d been cured. But the next day, her stomach swelled once again.
returned to the same hospital where another catheter was fitted for
what she thought would be three months – but three years on it remains
Referred to Manchester Royal Infirmary around a year
later, Miss Black underwent a urodynamic test, which involves inserting
two small catheters – one in the bladder and one in the rectum.
The bladder is then slowly filled with saline salt water and monitored for any irregular spasms.
a patient’s bladder is full, they are asked to pass urine with the
catheters in, allowing doctors to gather information on what pressure
the bladder muscle generates for a urine flow rate.
It was this
procedure that led to her official diagnosis of Fowler’s Syndrome, a
condition only described 30 years ago, in late 2015.
condition, which typically affects women aged in their 20s to 40s, can
occur as a result of an operation, or even spontaneously.
Black said: ‘It’s so rare that often, when I visit the doctors or
hospital, people haven’t heard of it. But it has a huge impact.
of the catheter, I’ve had a lot of kidney infections. I’ve probably
suffered around 90 infections and been in and out of hospital.
‘Just last week I was in Salford Royal Infirmary with another infection. I was given intravenous antibiotics.’
Now, Miss Black is hoping to have a type of surgery called sacral nerve stimulation, which is available on the NHS.
However, she said she’d prefer to have it done privately so that she can avoid the waiting list for the operation.
procedure involves small electrical pulses stimulating the nerves in
the lower back, just above the tail bone, which affect bladder control.