I went to bed healthy and woke up with bladder failure. It sounds like a clickbait title that belongs in a tabloid, doesn’t it? Except this is quite literally what happened to me back in 2020. I had no previous bladder symptoms until I woke up and found that no matter what I did – fingers in running water, lying in a bath, relaxing, peppermint oil down the loo – I just couldn’t pee. I was instantly concerned and knew that I’d probably need a quick trip to A&E, but it truly felt like a one-off, freak incident that would be forgotten about in no time.
When I arrived at A&E, my bladder was scanned and they noted it was full with 500ml of fluid. By the time the nurses were free to catheterise me, they drained over a litre from my bladder. At this point, the pain was excruciating and there were some concerns that the fluid may have travelled back up to my kidneys. I will never forget the moment that I was told that I’d have to go home with a catheter in and come back in two weeks’ time for a TWOC (Trial Without Catheter), because it truly hit me that this wasn’t a one-off quick fix and that maybe something more long term was going on. The panic and fear of the complete unknown really set in at this point. Not to mention the reality of having an indwelling catheter in for an extended period of time which can be really painful for Fowler's patients due to bladder and urethral spasms.
I ended up getting a TWOC appointment a week later, still couldn’t pee by myself (a soul-destroying discovery), and that was when I was taught to intermittently self-catheterise for the first time. There are a few different techniques and angles for self-catheterising, and often you won’t be taught or told them all, but you do eventually figure out what works best for you. Even five years later, I still use my catheterising mirror to make sure the catheter doesn’t touch any other body part before it’s inserted, for hygiene and infection purposes.
There are a few symptoms commonly associated with Fowler’s syndrome, the most common being the inability to pee entirely. Difficulty emptying, a weak stream, frequent infections, and sometimes a lack of sensation of fullness despite being full are some of the others. Fowler’s is notoriously slow to diagnose (it took a year and a half for me to get the urodynamics test which subsequently diagnosed FS), so please do make sure you get to a doctor if you feel like something isn’t right.
The five years that followed those terrifying first weeks have been a rollercoaster, to say the very least. It took me a while to not only physically get used to this big change in my life, but also mentally. I tried medication, pelvic floor physiotherapy, acupuncture, bladder distension, and instillations for my frequency symptoms (a lesser-known symptom of Fowler’s), none of which, unfortunately, have made much difference.
I feel like a different person to the pre-Fowler’s me, and perhaps I am – a more resilient one, for sure. I’m now an ambassador for Fowler’s Syndrome UK and raise awareness for Fowler’s on my social media platforms. It’s a club that nobody wants to be a part of, but we are lucky to have a very supportive community fighting to change the clinical landscape for women with Fowler’s syndrome.