I have never been able to empty my bladder properly. I have suffered with bladder issues my whole life. It has taken me a long time to commit to exploratory surgery but finally at 35 years old, today is my operation day. Let me give you some back story…
In primary school, I used to wet myself a lot. I would tie my school cardigan around my waist so that my friends wouldn’t see. I’m still haunted by the memories of a few friends telling me, “Emma, you have a wet patch on the back of your skirt!” when I wasn’t quick enough to cover it up. I chose to hide it rather than tell a teacher, because everyone knew you’d wet yourself if you had to change into schools’ spare uniform.
I wet the bed until I was 8 years old and then shortly after I became “dry at night”, I started chemo and regressed as the medication would often mean I didn’t wake up to wee. I used to take medication (Desmospray) any time I went to friends houses for sleep overs and would be terrified of wetting the bed in someone else’s house. Sometimes my mum would warn their parents so they could discreetly pop in a plastic sheet. It was not something I ever talked about with anyone except my mum as I found it so humiliating.
Urine infections or UTI’s as doctors refer to them, were frequent for me. Frequent as a child, frequent as a teen, but I must have peaked in adulthood. By my early 20’s I was suffering fortnightly UTI’s and was hospitalised with kidney infections a few times. The added curse of this was that sometimes when I had a UTI, I would accidentally wet the bed again. I had no control of that situation. As an adult. I can’t even begin to tell you how humiliating that was. I found it disgusting and shameful and it really upset me but I could never tell anyone about it.
At 20 years old, I contracted sepsis from a kidney infection, which Yeovil hospital confused with internal bleeding. I had xrays, keyhole surgery, anaphylactic shock from an antisickness drug, and ended up very seriously ill in hospital by time they diagnosed pyelonephritis and septicaemia. Little did we know, that I was also pregnant at the time (with Bunny, my oldest daughter).
I was hospitalised a few more times with pyelonephritis but thankfully not the sepsis. I had paramedics out to my house a few times too, when an acute infection crept up on me and had me screaming in pain.
It reached the point that all I had to do was phone my GP and say “I have another infection” and they’d leave a prescription at the desk for me. I didn’t even need to take samples in anymore. I became immune to one antibiotic. UTI’s ravaged my body to the extent the infections would only respond if I had a 10 day course of antibiotics. I often developed a throat infection shortly after (absolutely no idea why) and by time I recovered from that, I had another UTI. And repeat.
At 17 or 18 years old I had tests in Salisbury hospital. They told me I wasn’t emptying my bladder properly, even when I thought I was. I was taught some exercises to do whilst on the toilet, to help me empty my bladder. Lean forwards. Lean back. Stand up. Sit down. Lean back. Lean forwards. And that was that. I was sent on my merry way to suffer another 9 years of UTI’s before I was offered exploratory surgery at a private hospital in Cheltenham (but under the NHS). It was just as my surgery due date neared, that I got my positive pregnancy test (when I was pregnant with my twins). That was my surgery cancelled.
During my twin pregnancy (which is a whole other story) I gave up all caffeine, gave up all alcohol and religiously took omegas and prenatal vitamins. After giving birth, I continued to take post natal vitamins and omegas. Miraculously the cycle was broken. I have had a joyous 9 years with only 1 or 2 UTI’s per year. But I still couldn’t empty my bladder properly and since then a new problem has developed.
Over the past 9 years, it has begun to take me longer and longer and longer to wee. I was doing all the exercises I was taught, but my “flow” became a stop/start trickle. I simply can’t empty my bladder.
In 2020, I decided I’d had enough. Sitting on the toilet anywhere between 10-30 minutes per wee was taking over my life. Even after a 30 minute wee, I could feel that I still couldn’t empty my bladder. I was fed up with wasting around 2 hours a day on the toilet. It was affecting my daily life. I was fed up of all the “oh had a poo did we?” comments from people any time I went to the toilet if I was out with friends or visiting someone. And don’t get me started on using public toilets with kids in tow.
By this point I had told a few of the people closest to me that I have bladder problems and they would be very understanding. But it must be frustrating for them too when we were out shopping and they had to stand there waiting for me for ages.
So I went back to the doctors and asked for a new referral. I went into hospital for tests. Sensors were put up into my bladder and I had to sit on a special toilet to wee. It measured muscle activity, flow rate, volume and more. I was told to sit there until I felt my bladder was empty. After half an hour they shut off the test, because I was taking too long… Go figure! I knew I hadn’t emptied my bladder fully but when they catheterised me, I was shocked by just how much was still left in my bladder. It was a lot. Oh and the tests gave me a UTI!
The conclusion was that despite having a poor and slow stop / start flow, I was squeezing muscles to push, that I shouldn’t even need to use. To my shock, I was told I should never have to push hard to wee. This was news to me. I’ve always had to push and push and push to wee (with the exceptions of the times when I wet myself spontaneously when I was younger). Apparently emptying your bladder should be a natural process, you sit, it all flows out with minimal effort required, in one short sitting and that’s that.
… But it’s never been like that for me!
I was told I need to self catheterise 3 times a day for the foreseeable future. WHAT?! I have a family member who has to self catheterise and that person has a life fraught with UTI’s, caused by catheterising. I can’t go through all that again, now I’m finally relatively healthy. I point blank refused and said I’d rather struggle for half an hour, than self catheterise and suffer infections again. They agreed that I could boycott the catheterisation until my surgery, but I’m anxious that post-surgery they’ll say it’s my only option to empty my bladder properly.
So here I am today, in hospital, awaiting exploratory surgery to see if they can find the root cause of 35 years of bladder issues. 35 years of not being able to empty my bladder properly.
I’m sorry this may be a rather grim and over-sharing blog post, but I felt it was finally time to own my problems. And by sharing, I may hear of other people with a story like mine, and hopefully people who got a diagnosis and a cure. Quite honestly, I have always felt very alone with this medical issue and to be honest, sometimes, it would be quite nice to feel less alone on this, or maybe have some hope for a treatment which is more effective than “stand up and sit down again”.