A paediatric intensive care nurse was horrified when she was rushed to hospital during an epileptic seizure – only to discover she also had a condition which means she cannot urinate.
Diagnosed with adult onset epilepsy in 2014, which affects the brain and causes seizures, Lauren Mason, 28, was taken to Leicester Royal Infirmary hospital in March 2018 during an episode.
There, doctors found that her bladder was holding 1 1/2 liter of urine (about 1 1/2 quarts) – three times the amount expected to make it full to bursting.
Even more shocking was the fact that, although her bladder was so full, Lauren, who lives in Leicester with a cat and two house rabbits, had not urinated when she lost consciousness during the seizure.
It took doctors 18 months to diagnose her with Fowler's Syndrome, a little-known condition – the cause of which is unknown – usually affecting women in their 20s and 30s, making it difficult or impossible to pass urine, because the sphincter muscle in the bladder cannot relax.
The urgency to pass water is also missing, although when the bladder is full to capacity it can be very painful, and a catheter is normally used to empty it.
Recalling her rocky journey to a diagnosis, Lauren, whose boyfriend Sam Dowell, 24, is a pediatric intensive care nurse, has been told Fowler's Syndrome is so rare there are no official statistics showing how many people have it.
She said:
“At one point, doctors thought I had multiple sclerosis, which affects your brain and spinal cord. At another, they thought I had a dead bladder that would never work. There were even concerns that it was psychological."
“It was really difficult, as I'd only just started to get my life back on track after finding out I had epilepsy, so the last thing I expected to follow was another serious condition – especially not one which would mean having to learn to empty my own bladder manually with a catheter tube and bag."
The rarity of Fowler's means, according to Lauren, that not all medics understand how painful it is, and how horrible it can make a woman feel about her body and herself.
“I have spoken to other sufferers I have met through Facebook and we have all discussed how painful it can be."
She added:
“At its worst, you can have a full cramping sensation, like that feeling when you are about to go to the loo. But instead of passing urine, the bladder and the urethra go into spasm, which is the worst pain ever."
She continued:
“Learning to use a catheter, especially in public where it can take 15 minutes to empty the bladder, is also a huge challenge."
“There's nobody I know, including me, that has to use a catheter, who hasn't found themselves covered in wee at some point, too."
“It's happened to me at work and I've had to change into scrubs for the rest of the day."
Fortunately, last month, Lauren started a life-changing treatment on the National Health Service, known as sacral nerve stimulation, which has only been used on an estimated 200,000 people worldwide.
Designed to correct the communication problem between the brain and the bladder muscles which have clamped shut, it means she has been able to lose her catheter.
Instead, a 'release' signal is sent from a program on her mobile phone to a sensor – known as a neurostimulator, which is similar to a pacemaker – implanted in her sacrum, a triangular bone in her lower back.
In turn, this tells the nerves that control her bladder muscles to release and allow her to urinate.
She was so thrilled with her treatment two weeks ago, just days before her 28th birthday, she celebrated with a long weekend break to Madrid with Sam.
She said:
“Until now, I've been too scared to travel. I am nervous about flying, but I have all the paperwork to take to the airport to explain why I can't go through the normal security checks."
She added:
“But it's wonderful to be without the catheter. There's nothing sexy about looking at a bag of your own urine."
“It felt humiliating when I first had to use it, and also when people would complain that I was using the disabled toilets when I was out and had to empty my bladder."
“But one time, I decided to stop hiding and went out with the bag on show on the outside of my dress. I thought nobody should have to hide and why should I be stigmatized for something that's given me my life back?"
Lauren, who likes walking, hiking, climbing and camping, is determined neither the Fowler's Syndrome nor the epilepsy will stop her from enjoying a full and active life, both in and out of work.
But she admits that there is so little research on her condition that she does not know how it will affect her chances of having a baby in the future.
She said:
“I do want children at some point, but we just don't know how Fowler's Syndrome will impact on pregnancy and it may be I will have to turn off my implant in order to have children. I just don't know."
She concluded:
“What I have learned is to put myself first and make sure I am as healthy as I can be."
“I have lost some friends since developing Fowler's– you don't feel like fun when you're attached to a bag of wee – but the circle of pals I've kept are brilliant."
“While it's hard dealing with a chronic illness, I love my work and want to stay as independent as I can be."
