The second in a series of blogs during Urology Awareness Month offers a very candid account of urological conditions from a lay representative of NHS England’s Excellence in Continence Care Programme – Jacqueline Emkes – mother of four and secondary maths teacher from Bedfordshire.
With lived experience, Jacqueline has created a short animation focussing on finding the logical in urological and outlines her journey to understanding and managing urological problems, including her top tips for anyone suffering in silence to help break the stigma.
What I thought it was…
Eight years ago I thought urological was something a little bit embarrassing. Something people did not talk about. I had a vague idea that after childbirth, ladies tended to ‘leak a bit’ – usually referenced in jokes about trampolining.
It was my belief that ladies in care homes were attached to (rather smelly) urine bags. My grandmother always referred to the Christmas turkey as ‘Percy’ and somehow from a very young age I connected Percy and her ‘personal bits’ as giblets!
That was really the sum of my urological knowledge. Illogical I know.
So what do I know now?
Well, following a crazy number of operations to my bladder I now have what is called a neurogenic bladder. Sounds cool, eh? If only.
A neurogenic bladder can be described as having an overactive bladder, underactive bladder, stress incontinence and obstructed bladder.
I would describe it as having no urge to or feeling of needing to pee. Because of this I have to remember to pee, regularly. I set my fitness watch to vibrate at intervals throughout the day to remind me to pee. Yes, I know what you are thinking – she knows how to live!
But trust me it is necessary. Sometimes I find that my bladder spontaneously, without any warning signs empties due to being too full. No doubt you are cringing at the thought of my predicament. The condition has often left me in really difficult circumstances given sometimes there is simply no toilet nearby, or the queue is too long! Then there are the loos which are too horrid even to discuss. Imagine, full bladder and nowhere to go. Inevitably it empties.
Awkward or what!
Like when I had my babies, a changing bag has become my best friend. Bag essentials include pads and a change of clothes. I also have a ‘Radar’ key that gives me access to disabled loos at stations. But you know what? I am too embarrassed to use it. I do not think I am disabled…enough – it is a leaky bladder!
Likewise my ‘just-can’t-wait-card’ to skip to the front of a toilet queue…there must be someone worse than me…head screaming ‘I CAN wait’.
My other challenge is the fact my bladder does not empty fully; there is no sensation. So, to make sure it does empty I use disposable catheters. These neat, small hygienic tubes are easy to use, travel well and only cause a few questions at airports! They are about the size of mascara in my handbag so fit neatly and discreetly when compared to the noisy, crinkly and large catheter I used to carry around. There was no disguising that! They might be small and friendly catheters but pose a real challenge to being able to self-catheterise in hygienic circumstances away from home as often the public convenience is less than adequate…will leave this to your imagination!
With all this pee swilling about there is the inevitability of a bladder infection so lots of antibiotics, urine tests and keeping up my fluid intake is a must. Another tip is to make sure pee looks like lime juice…not orange juice!
While my story may sound a bit dramatic, it does not have to be. The next time you are on a trampoline and spring a leak please get some help. Simple lifestyle changes and exercises can make all the difference.
The best tip is to see and listen to a physio. They are amazing and get you on that pelvic floor. Squeeze! Oh and another thing, worried about public swimming pools in case of a leaky moment? Go for the open water lakes or the sea. It is refreshingly better! Logical really.
Keep Calm and Stay Dry.
Commissioners, providers, health and social care staff and members of the public can download the Excellence in Continence Care practical guidance for more information.
In addition, find out the latest on the provision of absorbent pads for adults.
Jacqueline Emkes, lay representative of NHS England’s Excellence in Continence Care Programme.