Urinary Retention and Fowler’s Syndrome

Zoe's Story

Originally published on: February 25th, 2022. Last modified on April 4th, 2022


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My name is Zoe and I have had Fowler’s Syndrome since January 2016 (diagnosed 2017) at the age of 18.

Growing up, before Fowler’s Syndrome, I was a National Gymnast who competed all over the UK. I have always been an ‘adrenaline junkie’ and lived life at 100mph! As an adult, I regularly attended adult gymnastics and trampoline parks! Although I was nowhere as strong (or as healthy) as I used to be, I was still as fearless as when I was a child doing gymnastics!


Urinary retention



I woke up in January 2016 and I didn’t need my usual morning wee! As the day went on, I still had no urges until about 6pm. A sudden, agonising urge to wee came, but I couldn’t empty my bladder. I ran a small bath, had a tap running, but nothing helped. Then I started to panic! I called 111 and explained the situation. They told me to go straight to A&E.


I remember begging him to catheterise me. He drained over 2 litres.

When I was called in, the male Doctor said he didn’t want to catheterise me without a female chaperone, who was currently doing community visits.

I remember begging him to catheterise me, which he finally did. He drained over 2000mls (2 litres). The relief was incredible and the doctor was in shock with how much he’d drained, telling me he’d never drained so much urine before! He fitted me with a Urethral Indwelling Catheter that I had in situ until May 2016.


I had my first Urology appointment and was booked in for a cystoscopy. On the day, they performed the cystoscopy, dilated my urethra, removed the indwelling catheter and I was told I have a ‘large saggy bladder’. I was discharged with three boxes of Intermittent Catheters and a google print out on ‘how to self-catheterise’.


In January 2017, I had my first appointment in London. A handful of tests (including a video urodynamics) were performed over the coming weeks. Although these tests were briefly uncomfortable, they were over fairly quickly. Over the next few months I fell pregnant with my son. All appointments were postponed and unfortunately took a while to be re-booked in. When I had that appointment, my consultant suggested Sacral Nerve Stimulation. But by this time, I was pregnant with my daughter. My next appointment was January 2020 and we booked in to have my SNS in Summer.


I was given the choice of having a mitrofanoff or an ileal conduit (2 types of major urinary diversion surgery). I am now waiting to have a mitrofanoff in Spring 2022. Until then, I have a cystoscopy and my SPC changed under General Anaesthetic every 4 weeks.


Due to my deteriorating health, I have been struggling with my physical and mental health a lot more than usual. I am extremely fortunate that I have an incredible bubble of family and friends around me. I live in a very happy home with my partner; James and our two cheeky children; Leo and Rosie. Having two young children has massively helped me. They give me a purpose to ‘get going’ every morning.

I have recently had a few hospital admissions for days / weeks at a time and the hardest thing about being in hospital is that I cant be a ‘mum’ to my children. Due to Covid19, hospitals don’t allow visitors on the ward. When the children do visit, it breaks me! I have to remind myself that everything is temporary and when I have a mitrofanoff, my quality of life will hopefully improve, massively!

Urinary retention
Zoe with her two children

I’m very open about having Fowler’s Syndrome and how it effects my day-to-day life.

I’m very open about having Fowler’s Syndrome and how it effects my day-to-day life. I try and be as transparent to my work as much as possible. I currently have two jobs; I work at a school and I am a community care giver. Both employers have been incredibly supportive.

Although my anxiety goes through the roof whenever I get a surgery date, or an emergency arises and I need to let work know, knowing that I’ve always been honest with my employers helps massively.

Recently, my life has turned upside down. I’ve been unable some days to get out of bed. Work has been minimal, due to an ongoing infection since November – which I hate as I love to work!



My biggest advice for someone who’s showing symptoms is push, push, push your local services to investigate! There are a huge variety of symptoms with Fowler’s Syndrome. No two patients are identical. If you don’t feel heard, ask to see another doctor. No doctor likes a ‘Dr Google diagnosis’, but my mum had essentially diagnosed Fowler’s Syndrome before it was ever mentioned by a doctor!

Further Information


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