Trained in Clinical Neurophysiology, Professor Fowler became Professor of Uro-Neurology at the Institute of Neurology, UCL in 2001. Her clinical specialisation is Neurology of bladder and sexual dysfunction. Particular interests include severe detrusor overactivity due to neurological or non-neurological causes, bladder dysfunction in the context of advancing neurological disease and urinary retention in young women (Fowler’s Syndrome).
Chair of FSUK. Consultant Urological surgeon, West Middlesex University Hospital.
Professor in Uro-Neurology and Clinical Neurology, University College London. Clinical Lead, Department of Uro-Neurology, The National Hospital for Neurology and Neurosurgery/UCLH NHS Foundation Trust.
Senior lecturer in clinical neuroscience at UCL. Chartered psychologist and associate fellow of the British Psychological society.
Professor of Neurology at the University of Edinburgh and Consultant Neurologist with NHS Lothian.
Consultant Neurologist, University of Edinburgh and NHS Lothian.
Honorary consultant neuropsychiatrist, Royal Infirmary Edinburgh and PhD student at the University of Edinburgh.
Consultant Urological Surgeon, West Middlesex University Hospital.
Consultant gynaecologist specialising in urogynaecology, St Michael’s Hospital, Bristol.
3rd year Medical Student, St Georges, Tooting.
Consultant Urologist, Victoria Hospital, Kirkcaldy, Fife.
This is a very brief version of my story so far. I went into retention in October 2020. I went straight to A&E where an indwelling catheter was inserted and a litre of urine was drained off. I remember so vividly the doctor saying “we can remove the catheter and see if you can go, which we don’t think you’ll be able to. Or you can go home with it in and go to outpatients urology in a couple of weeks”. It was in the middle of the pandemic and I was all alone, so I did what I always do when I’m scared and unsure of what to do, I called my Mum and asked her what to do.
I went back to the Urology clinic a week later to have my catheter removed and a TWOC (trial without catheter) which I failed spectacularly and I was taught to self-catheterise in about a minute. I saw a consultant that day who told me I was just an anxious young girl, that I should go away and do some yoga and it’ll all be fine. She told me I’d just drunk too much even though I assured her I’d barely drunk anything. 2 and a bit years down the line, I was diagnosed with Fowlers Syndrome, I still ISC (intermittent self catheterise) and I’m awaiting a Sacral Nerve modulation op in January 2023.
Like so many of you, the last couple of years have been a rollercoaster. There have been many loop the loops and sheer drops, but throughout all of the above, I have had a constant fire in my belly to make sure that women in the future don’t have to suffer that stigma that so many of us have. We deserve more, we deserve better. We deserve to be listened to, to not be dismissed and to be believed when we say we’re in pain. Change starts with awareness so if you haven’t shared your journey with us, please do.
For everyone reading this with Fowlers, I’m on this journey with you. And for everyone who doesn’t, thank you for taking the time to listen to our stories when so many others have been so quick to dismiss us. Let’s all band together to create a change for women with FS. 🦊💚”
Ambassador
We are delighted to announce @ellenextdoor as FSUK’s ambassador.
Elle is a content creator based in London, and she is living with Fowler’s Syndrome. Elle went into retention in October 2020 and had sacral neuromodulation in January 2023.
Click on Elle’s picture to read about her Fowler’s journey.
