Zoe, 24 from Oxfordshire/Northamptonshire border kindly tells Bladder and Bowel Community how one day she suddenly went into urinary retention and how having a diagnosis of Fowler’s Syndrome changed her life.
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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!
Fowler’s Syndrome has taken this away from me. It makes me really sad to think I will probably never be able to do another somersault again! I now take my daughter to gymnastics weekly and it brings me so much joy seeing how much she enjoys the sport and my old coaches coaching her!
A sudden, agonising urge to wee came, but I couldn’t empty my bladder. I started to panic!
My Fowler’s Syndrome journey started really abruptly. Nothing significant had happened before hand. I have had a couple of UTI’s / Kidney infections growing up, but nothing in the lead up to me going into complete urine retention. Although I have always been a terror for ‘holding in’ for hours!
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.
When I arrived, I was taken straight to resus and a nurse came in ready to catheterise me. She got called away and didn’t return for four hours! When she returned, she said to me (I remember this moment so clearly!), “we like to show youngsters a catheter and wait a while because it normally scares people, and they suddenly wee!”. Well, I’d been waiting four hours and I was still retaining, in agony! Eventually they sent me around to the ‘Out of Hours’ Doctor. I had to wait a further hour to be seen.
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.
My GP visit regarding my retention (another moment that I will never forget) I was bluntly asked “what drugs do you take? Have you taken Ketamine? Girls don’t suddenly loose the ability to wee…”.This wasn’t the case and I left too scared to tell my Mum I was in retention because I thought she’d also assume I was on drugs. Waiting for my Urology referral was a really isolating time. It took me weeks of pain and embarrassment until I told my mum what was happening!
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’.
I was booked in for a Video Urodynamics test shortly after. On arrival, the Doctor arrived and spoke to my Mum and I and said ‘I don’t want to perform this test today. I’m going to refer you to London. I think you have a condition called ‘Fowler’s Syndrome’ They will want to do the test themselves. This Doctor is still my local Doctor today!
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.
My Sacral Nerve Stimulator trial went ‘ok’, and I had my permanent device implanted two weeks later. During recovery, I struggled with the settings on the device and was having a horrible pain over the battery site. I had amazing communication with the hospital during this time and we decided to book me in to have some steroids around my SNS Battery site and have urethral botox. The botox helped me massively over the next couple of weeks (made self-catheterising more comfortable), but it was short lived and the pain from the SNS worsened. The device was removed in February 2021 and I had a Suprapubic Catheter (SPC) inserted locally in March 2021.
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.
Having two young children has massively helped me. They give me a purpose to ‘get going’ every morning.
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!
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!
I can’t be the mum I want to be (instant heartbreak when I talk/think about that). However, when symptoms and infections are under control, things can be great! We love days out, London is one of our favourite places. We love going to the theatre but I always have a degree of anxiety in case symptoms flare.
If you don’t feel heard, ask to see another doctor.
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!
Navigating life with a catheter can feel overwhelming at times, which is why the Bladder and Bowel Community have launched a Catheter Care guide to help answer those tricky answers that you may have. Follow the conversation on Social Media with #CatheterWeek and get involved with any comments you may have.
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