Laura Dalby has spoken candidly about everything from sex to starting a family in a bid to raise awareness.
A young professional who operates her bladder using a remote control has spoken frankly about everything from sex to starting a family, to break down taboos surrounding her little-known condition.
When compliance consultant Laura Dalby, 26, was diagnosed with Fowler’s syndrome in 2010 – making it difficult or impossible to pass urine because the sphincter muscle in the bladder, that maintains continence, cannot relax – she felt like a “weirdo” and feared she would “never be sexy.”
Told in October 2018 by doctors there would “never be a cure” for the harrowing condition, rather than clamming up, she embraced it – sharing her experiences on social media to encourage greater openness and understanding of how Fowler’s affects lives.
Laura, of Manchester, whose fiancé, Andy Madden, 31, is a business manager, said: “The biggest thing for me was speaking honestly about my story for the first time ever.
“When people hear what Fowler’s is, they think you ‘just can’t wee,’ but it’s so much more than that.
“That’s why when I have flare ups I get Andy to live record them on my social media for other people to see.”
She added: “It’s scary, being that honest with people, but they have to see it to properly understand.”
Causing frequent bladder infections, amongst other things, Fowler’s can also make it very difficult to have a normal sex life.
Speaking candidly, Laura continued: “After Andy saw how much pain I was in from the constant urine infections, he was very scared of hurting me and, to be honest, there was a period of time where sex was incredibly painful.”
She continued: “It wasn’t just the physical pain though. Fowler’s can make you feel like you’re unsexy and unwomanly. It makes me terrified of someone else seeing me like that, too.
“Fortunately, when my infections are few and far between, we have a very healthy sex life.
“But I have a few rules in place now, so if I’m having a flare up and need my bladder draining, I don’t need him to see the bag and the colour of its contents!”
Laura’s complications with her bladder started in childhood, when she says it always seemed to be the “topic of conversation” with her family.
“I suffered on and off with bladder issues for as long as I can remember,” she explained.
“My mum, Monica, was always asking when I’d last been to the toilet and sometimes it was well over a day before.”
“Then, when I was 14, I thought I had a water infection, so I drank a pint of water and had a hot bath at my auntie Sharon’s recommendation,” she continued.
“But I noticed lying in the bath just how distended my stomach was and the next thing I knew I was screaming in agony and on my way to A&E.
“At first, everybody thought I was pregnant. You can imagine the dodgy looks I got at 14 years old.”
Doctors at Nottingham’s Queen’s Medical Centre, the nearest hospital to her then home, drained her bladder of over two litres of urine.
“After that, though, it started happening every couple of months and each time I’d end up in A&E,” she recalled.
Hoping to find an underlying cause, doctors ran tests and scans, looking for signs of kidney stones, bladder stones and any obstructions to the bladder – but they all came back clear.
“Each and every time I was back in hospital it was agonising,” said Laura. “As my bladder got bigger, it felt like it was pushing on my other organs.
“It got to the point where I was breathless and passing out.”
Finally, 18 agonising months after her first visit to A&E, Laura was referred to central London’s National Hospital for Neurology and Neurosurgery for further testing, where she was diagnosed with Fowler’s syndrome.
Then, three months later, in February 2011, aged 17, she was fitted with a suprapubic catheter – when a flexible tube is inserted through the abdomen to empty the bladder and collect urine in a drainage bag – at Nottingham University Hospital.
“I didn’t want one fitted at all,” she said. “I’d put it off for as long as I could because of my prom – which sounds silly looking back – but I was a teenager who just wanted to be like everybody else.
“But after nearly two years of suffering, I knew I had to give something a try.”
Unfortunately, instead of solving her problems, after having the catheter fitted, Laura’s bladder health went from bad to worse.
“It was just one constant bladder infection,” she recalled. “I don’t know what it was about the catheter, but it did not suit me at all.”
Fortunately, six months later, in September 2011, she had sacral nerve stimulation (SNS), when a device similar to a pacemaker is fitted in the lower back that corrects the communication problems between the brain and the bladder muscles, which have clamped shut.
Explaining how she goes to the toilet “on the clock,” Laura said: “I go as soon as I wake up and right before bed and three times in between.
“The problem with Fowler’s is I can’t always tell when I need to go, so I just have to trust my bladder will need emptying at set times.
“Sometimes I’ll sit and have the tiniest wee but at least I know I’ve done it.”
She was also given a remote control, “the size of an old fashioned pager,” to keep in her handbag or pocket, in case she is struggling to release urine and needs to increase the bladder stimulation.
“I can’t describe what it was like to finally be given control over my bladder after so many years,” she said.
“I had felt so low, constantly fighting niggling thoughts that I was ugly because of the tubes and scars all over my body.”
She continued: “I honestly thought I would never be sexy and I suffered with that for years.
“Suddenly I had this little remote control that could change all of that. It’s with me wherever I go – it just became a staple item in my handbag!”
Describing the first few years after SNS as “life changing,” sadly, towards the end of 2017 Laura’s symptoms started to creep back.
“I’d just started seeing Andy when I began to get bad infections again,” she said.
“When I hadn’t been able to pass urine for over a day and a half, I knew I had to go to A&E and poor Andy just didn’t know what to do.
“I was telling everybody through gritted teeth that my bladder must be nearly three litres full and I needed it to be drained.”
She added: “It’s a testament to Andy though, that he stayed with me. He could have run a mile, but he saw it through.”
Hoping a battery refitting in the SNS device might see her bladder function return to normal, Laura had the procedure in February 2018 at Salford Royal Hospital, Greater Manchester.
But throughout 2018, Laura was plagued with “infection after infection” and making trips to casualty every two weeks to have her bladder drained.
“I was literally dragging myself into work I felt so ill,” she said. “It was the lowest I’d ever felt.”
After being hospitalised for a kidney infection in October 2018, doctors discovered Laura’s bladder was still holding 300ml of stale urine that had not been emptied in months.
Draining it away, doctors told her that her best option was a course of low-potency antibiotics, which she could take daily.
“They told me that there was no cure for Fowler’s and this was how my life was going to be for the foreseeable future,” she said.
“At first, it felt like a kick in the teeth. I realised I’d had 10 years of this condition wreaking havoc on my life and that it might never end.
“I know I’m very fortunate in a lot of ways, but that doesn’t stop the dark thoughts coming in. I just didn’t want to live like this.”
Searching the internet for fellow sufferers, so she had support, Laura found the charity Bladder Health UK.
“I thought to myself, ‘I can’t be the only one feeling like this,’ and I was right,” she continued.
“I found a whole community of young women, like myself, whose lives were in ruin because of Fowler’s.”
“I got in touch with Bladder Health UK and asked how I could help raise awareness for them,” she continued.
“Something in me flipped then. I decided to own my condition and help others in the process.”
In February last year, Laura began talking about her experiences with Fowler’s syndrome on Facebook, signing up for the Total Warrior 12km race in the process and raising over £2,000 for the charity.
“Complete strangers have got in touch and told me what a difference my posts have made to them,” she said.
“They tell me they don’t feel alone, or they’re no longer embarrassed to talk about Fowler’s.”
Now, Laura hopes that by speaking out, more people will start to better understand this cruel condition.
“I must have been admitted to hospital over 100 times and I’d say on only five of those, people actually knew what my condition was,” she said.
“I’ve accepted this is my life. Now I want to help raise awareness and, in the process, help other people accept their condition too.
“It’s taken me 10 years, but I’ve realised Fowler’s doesn’t define me, although it does affect many aspects of my life.”
Starting a family in the future is something that Laura fears may not be straightforward, because of having Fowler’s.
She said: “It will probably need more planning for us than for the average couple.
“I’ve spoken to ladies in my support group online who’ve said that they’ve had babies and it’s been completely fine – others have shared some hellish stories.”
She concluded: “My main fear is what happens if you’re retaining three or four litres of urine and your stomach just doesn’t have the room to accommodate it.
“But we’ll cross that bridge when we get to it. I’ve not even set a date to walk down the aisle yet!
“For now, I’m just happy to know that I’m not a weirdo and I can be sexy – Fowler’s or not.”
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