In her first year of Medical School, Ayesha had a series of new experiences, but Fowler’s Syndrome wasn’t on her ‘to do’ list. In this article, she shares her lived-experience to support others who may experience the condition.
Peeing isn’t something you usually think twice about. You sit on the toilet, do your business, and get on with your day. Now imagine one day you woke up without the ability to do so. For many young women struggling with a rare condition called Fowler’s Syndrome, this is the reality.
Fowler’s Syndrome is a complex urological condition causing complete urinary retention, primarily impacting young women. The difficulty lies in the external urethral sphincter’s characteristic inability to relax – one could say it has major issues letting go. Navigating a condition so rare that you become the expert, educating most GPs and A&E doctors yourself, can be a real struggle. My name is Ayesha; I’m a British-Pakistani medical student, and this is the story of my journey with Fowler’s Syndrome.
First lecture. First new friend. First kidney infection?
In my first year of medical school, I’m already expecting a ton of exciting new firsts. First lecture. First new friend. First kidney infection? Not quite what I was looking forward to, but I shrug it off.
Fast forward to an evening in January, and I haven’t been able to pass urine all day. My parents were very concerned; they convinced me to call 111. The clinician instructs me to arrive at the hospital within four hours. Greatly underestimating the urgency of the situation, I sat in my university room, eating takeout, before making a move.
The next thing I know, I’m getting asked all kinds of questions
I reach the hospital, and the next thing I know, I’m getting asked all kinds of questions: “Has this happened before? Do you have any feeling to go?” No, I answer to both. Time stands still in busy A&E waiting rooms.
Many hours later, I’ve had an indwelling catheter inserted, and I’m told to wait to see how much drains. Over 1 litre and still going strong! Denial was no longer possible. I get sent home at 5 am with a tube hanging out of me and a drainage bag strapped to my leg; not exactly how I pictured my university life.
A few days pass; I’m in my bathroom, and I am in agony. I hover over the toilet and, in a moment of weakness, like a reflex, tug at my tubing. Pain ripped through me. I collapse on the floor, screaming.
I was a terrified 20-year-old all alone.
Luckily, I managed to grab my phone just in time before the fall, so that it’s on the ground with me. Dialling 999 frantically, I finally get through, and an ambulance is sent to me. I call my parents, screaming down the line, to let them know what’s going on. In that moment, I was a terrified 20-year-old all alone.
A bladder scan reveals the catheter has moved out of my bladder, partially inflated. It is removed and reinserted. Crisis managed – little did I know this was just the beginning.
The next stop on my bladder journey was the rather unpleasant world of urodynamics – this involves filling the bladder with fluid, inserting wires in places I would rather not mention and giving it your all to pee with a crowd watching.
So rare that most doctors haven’t even heard of it
Then came the weight of the crushing diagnosis: Fowler’s Syndrome, so rare that most doctors haven’t even heard of it. From that moment on, it became the centre of my life.
Fowler’s Syndrome threw me into a whole new world of firsts. First time self-catheterising – now that’s a milestone you probably haven’t heard of. The process involves inserting a thin catheter into the urethra for long enough to drain the bladder, and then sliding it back out. The urethra is not the easiest of places to locate without direct visual.
I would enter the disabled bathroom, set up my pop-up stool, prop up my mirror, and attempt the ritual. Not once. Not twice. But three times a day. When I thought things couldn’t get more complicated, the storm of recurrent infections began.
How could I ever forget? The relentless pain, the exhausting nights in hospital, seeing red in the toilet bowl – and the gaslighting. I remember one time an A&E doctor pulled me to the side and gave me a speech on how I was crying out for help. In a sense, she wasn’t wrong – I was crying out for help; medical attention!
This experience completely tore me apart. I locked myself in the toilet and begged my friend to get me. I’d never felt so small. Fowler’s is more than not being able to pee – it’s constantly having to prove how sick you are.
Fowler’s Syndrome UK reports that:
Approximately 75% of women with the debilitating condition are told it’s all in their head
As if the physical and mental burden wasn’t enough already.
Eventually, I could no longer self-catheterise and became entirely dependent on an indwelling catheter. I was utterly exhausted from fighting everything – my pain, the doctors and even myself. I reached my breaking point, leading to a break from medical school.
When my urologist first mentioned Sacral Nerve Stimulation (SNS), I didn’t want to get my hopes up. Overwhelmed by so much heartbreak, I never thought I would be able to do anything past survive.
SNS, simply put, is a surgical procedure in which an electrical stimulator is placed in the upper buttock and an electrode is fed alongside the sacral nerves, which coordinate bowel and bladder function. My parents, who felt I had nothing to lose, convinced me to have the procedure.
Over 50 hospital visits in the last year
However, in classic Ayesha fashion, things didn’t go as planned. Another raging UTI meant that the first stage of my procedure was cancelled the same day. This was devastating. I had already mentally prepared myself that I wasn’t going to have to struggle with the catheter any longer. I didn’t have it in me to deal with the complications anymore: blood clots, blockages, passing out from pain and endless exhaustion—over 50 hospital visits in the last year.
A couple of weeks passed, I recovered, and the stimulator was implanted in the first stage of the procedure. The wound was left open, with dressings covering the external wires. The goal? To see if the device would restore my ability to pee.
Two days before the second surgery, I started getting blood clots in my urine and sharp pain. I rushed to the nearest UTC and was given antibiotics. I was devastated.
Something was very, very wrong
The day of the procedure, things took a turn for the worse. I collapsed 3 times. My mum found me unconscious on my bedroom floor. At the hospital, I collapsed a fourth time in front of the staff. Something was very, very wrong.
I was lifted by a hoist, monitored for the possibility of sepsis and taken to St George’s Hospital by ambulance. The team was concerned as I had fallen on the wound, but an X-ray cleared me of the possibility that the wires had dislodged internally. For six days, intravenous antibiotics were administered via drips.
Eventually, stage two went ahead. Recovery was rough; even morphine could not relieve my agony, and I knew exactly why: my fibromyalgia, which heightens and prolongs pain.
Somehow, I survived that night.
Then came the turning point I had been praying so hard for
Things began to normalise; pain was now manageable and, more importantly, for the first time in years, I was able to pee without a catheter!
This is my story, but it’s not just my own. Too many young women are dismissed, told that their pain and suffering is all in their heads, and written off as anxious or depressed. No one should have to fight to be believed, to be seen and to get the treatment they deserve.
We’d like to thank Ayesha for sharing her experiences with our Community and hope that she continues to advocate for her own health, and enjoy life at medical school and beyond. We hope that articles like this can help educate everyone in the symptoms of Fowler’s Syndrome which still goes undetected for so many.
Find out more about Fowler’s Syndrome via our information hub. You can also share your thoughts via our social channels, please find our page on Facebook, Instagram and LinkedIn.