FOR 15 years, Aoife Madden hasn’t been able to pee properly.
At the age of 16 she suffered an incredibly rare condition that caused her bladder muscles to ‘clamp shut’.
maketheheadlines.co.ukAoife Madden, 30, hasn’t urinated normally for 15 years[/caption]
maketheheadlines.co.ukShe was diagnosed with glandular fever in her teens and suffered shingles, she then developed bladder retention[/caption]
maketheheadlines.co.ukIn agony, she was taught to catheterise herself and is now waiting for bladder stoma surgery[/caption]
Instead, since 2009, Aoife has had to use a suprapubic catheter – for which she has needed to have a general anaesthetic every six weeks to replace it.
It means the teacher, from Birmingham, has had more than 200 hospital admissions in 13 years, after it took more than a year for her to be diagnosed with Fowler’s Syndrome.
Now, after more than a decade of unbearable bladder pain, Aoife, 30, is awaiting surgery to have her bladder removed and a urostomy stoma bag fitted.
She’s now passing painful stones – a build-up of chemicals – vaginally and says: “In the interim, I’m getting so torn by passing all the stones that it’s looking like I’ll need a labia reconstruction afterwards.”
Aoife said: “I went into full urinary retention at 16 and I haven’t been for a proper wee since.
“I was 17 when I had to have a suprapubic catheter fitted – it’s a hole on the stomach and they put a tube in it and then it’s got a little tap on the end with a bag for the wee to go into.
“At the time I thought that was going to be temporary until they tried some of these groundbreaking surgeries that they had in the pipeline.
“But I’ve had it on and off for 13 years.
“It turned my life upside down. I’ve had to put my life on hold and I’ve been in agonising pain.
“I’m now waiting for urostomy surgery to have my bladder removed so I can wee normally, as well as a potential hysterectomy.
“I need to have this done to improve my life so I can fight for others who are going through something similar.”
At 16 in 2009, Aoife was healthy and preparing to start her A-levels when she caught glandular fever and was hospitalised, where she was told she had shingles.
Overnight, the disease spread to the inner wall of her bladder, and she felt as though she wasn’t able to urinate, even though she was drinking a lot.
Despite the help of the hospital nurses, Aoife didn’t urinate for 24 hours.
She said: “The hospital nurses ran taps and put me in warm baths to see if I could wee – but nothing worked.
“The following day, they put a urethral catheter in to drain my bladder as it was 300ml full and I was in agony.
“No one knew what was happening and I felt petrified. One minute I was a normal teenager going out, the next I was thrown into a whole new world.”
LIFE-CHANGING DIAGNOSIS
Aoife was told she had urinary retention – when you are unable to empty your bladder – but it took a year to diagnose her with Fowler’s Syndrome.
The condition occurs when the muscles that prevent incontinence fail to relax when a person goes to the toilet.
The schoolgirl was shown how to use a mirror to find her urethra and catheterise herself, using a tube to drain the urine from her bladder.
Despite being discharged from hospital days later, Aoife was unable to go to Sixth Form due to the pain, so she took a year out to learn how to self-catheterise.
However, her urethral muscle was so tight the catheters would get stuck and she couldn’t pull them out.
She’d be left in agony, barely able to walk and needed to attend A&E.
Nine months later, she was fitted with a suprapubic catheter, which was left in place, needing to be changed every six weeks.
It was meant to be temporary but it seemed to be the only solution that worked.
Aoife said: “One consultant told me I just needed to calm down – he was old school and had no faith in the condition. I felt completely alone.
“He told me if I could just calm down and relax, then maybe I would wee. Even as a teen, I felt like women’s health wasn’t taken seriously.
“Doctors eventually told me it wasn’t working due to my tight urethral muscles, so they sent me for further tests in London where I was diagnosed with Fowler’s Syndrome.”
The diagnosis changed Aoife’s life – she paused her education and her friendships and relationships suffered for a long time, as she couldn’t go out.
She had five sacral nerve stimulators via surgical procedures between the ages of 19 and 21 to encourage her bladder muscles to relax in her late teens, but they didn’t work.
She then had mitrofanoff surgery with bladder augmentation (when the bladder is enlarged), so she has a part neobladder, made with part bowel.
But within six months, she was back to her suprapubic catheter.
Meanwhile, Aoife managed to finish her A-levels and went to a university in Birmingham to study to become a primary teacher.
She took pain relief when needed as well as a variety of medications for Fowler’s related symptoms.
During university, she had to take time out to do appointments and surgeries so her degree was prolonged by six months due to her health.
She learned to adapt in order to attend her lectures and social events by leaving early, planning things close to home, taking spare clothes and cleaning products.
Aoife was determined not to let her condition impact even more of her life, so in 2014, she travelled around Asia.
She needed to have routine surgeries for her catheter changes and arranged for these via her insurance in hospitals in Vietnam and Thailand.
She was nervous but wanted to prove she could live a full life regardless of her bladder disability.
Then she started working as a full time teacher, but it was difficult to manage her regular need to attend the hospital.
SURGERY HOPES
She said: “Over time, I’ve been given support by the team I work with to prioritise my health whilst teaching.
“I have a classroom near a bathroom, a TA who can step in if and when I leak at school and arrange cover for routine surgeries.
“This can be difficult so I plan as many appointments outside of school hours as I can.”
Aoife met her boyfriend Jack at the end of 2018 and was open about her bladder condition as soon as they started dating.
She said: “There were plenty of conversations that were difficult for me at the start, accompanied by regular bag leaks, middle of the night bed changes and messy medication side effects, but he’s always been supportive.
“Previous partners have coped fine too and I’ve never had any issues with intimacy, all thanks to how open I am about my condition.
“But there have been vulnerable points too. In December 2022, I told Jack that I felt broken because I’d spent 326 hours on the phone in a year chasing my appointments.”
Despite always going back to the suprapubic catheter, Aoife can’t have it forever.
Her body has been creating stones, a build-up of certain chemicals in the body, which she’s passing vaginally, because there’s an opening between her womb and her bladder.
The stones are cutting her and causing pain.
Aoife’s only option is to have her bladder removed – which will hopefully stop the stone formation – and she will have a proper urostomy stoma bag that is used to collect urine.
Instead of going to the bladder, urine will go outside of the abdomen; the part that sticks outside the abdomen is called the stoma.
Most urostomy pouches need to be emptied once or twice a day.
She said: “I’m at the end of the road as I’ve done everything else.
“I’m terrified about the potential of losing my womb because both organs are close together and I am currently passing stones vaginally, so there would always be a risk there, but I’ve got other avenues to explore if it goes that way.
“The Queen Elizabeth Hospital in Birmingham wants me to undergo multiple assessments first as the surgery is so final.
“But I have been chasing like mad and have dedicated ‘bladmin days’ to get the process moving.
“I reached the end of my tether last year and spent some days sitting outside the office at the NHS Patient Advice and Liaison Service to try and get an update.
“Hopefully I’ll have the assessment soon followed by an appointment with the stoma nurse and meetings with the clinician before finally a surgery date.
“The NHS system needs to be more preventive rather than reactive, so people like myself don’t experience any further unnecessary complications.”
HELPING OTHERS
During lockdown, Aoife decided to share her journey and created a website, BisForBladder as well as launching it on Instagram to campaign for bladder conditions.
She wants to show girls with bladder issues that they’re not alone.
She said it’s important as when she was a teenager, she only ever met older women with Fowler’s Syndrome in hospital.
She said: “I’ve also set up a mentoring service for young girls between 11 and 16 so that we can get them ready for when they move to adult care.
“I’m campaigning to change the way the pathways are run within the NHS as I’ve had to navigate Fowler’s Syndrome completely on my own.
“I don’t want other young girls to go through what I have, so BisForBladder is running some patient-led support days at the QE Hospital for people with bladder conditions.
“There, I can meet girls and tell them they will get through it. Chronic health affects one in two people, and any one of us could suffer at any point.
“And I want to make sure those who are going through this terrible time have all the support they need.”
maketheheadlines.co.ukIt took a year for Aoife to be diagnosed with Fowler’s Syndrome – and she is now passing stones vaginally[/caption]
maketheheadlines.co.ukThe primary school teacher is waiting for surgery, which may affect her womb[/caption]
maketheheadlines.co.ukAoife is committed to living life to the max despite her condition, and won’t let it hold her back[/caption]
maketheheadlines.co.ukHer partner Jack is very supportive, and Aoife is determined to support other young women going through what she is[/caption] Read More