Bladder Exstrophy and Me

I’ve just titled this article. I should clarify: I mean I’m going to talk about me, and my experiences of bladder exstrophy. I don’t have bladder exstrophy and M.E.

I should also point that I’m a stand-up comedian and while the above isn’t intended as a joke, it’s an example of how accidental humour can creep in when when you’re dealing with unusual medical conditions.

For example, although I’m a stand-up comic, I’ve never done any stand-up urinating. I intermittently self-catheterise; I’m a sit-down peer. In fact the only time I’ve stood up to pee was when I came out of hospital and went straight to a gig, wearing an in-dwelling catheter and a leg bag. Some very baggy trousers hid from the audience that their comedian for the night was secretly having a wee in front of them while telling jokes. Who says men can’t multi-task? At least it saved me queuing for the toilets, and it’s good to know I wasn’t the only one that night taking the p...

...Isn’t it best to start at the start though?

Bladder Exstrophy: Scratching the Surface

If you don’t know about bladder exstrophy, we’re something like 1 in 50,000 births. It’s congenital (which I only found out a few years ago means ‘since birth’ rather than ‘with genitals’), and is an abnormality that essentially means my bladder was born having an out-of-body experience. Like bellybuttons, most have an ‘innie’, but my bladder was an ‘outie’.

I believe mine was splayed on my tummy, a bit like a spatchcock chicken. To be honest I can’t really remember – I just know it was a surprise to my parents back in the late 1970s, though nowadays scans generally pick up this kind of thing.

I hear too that they fix these things much more quickly now. I had dozens of operations over the first few years: an epispadias repair, a colocystoplasty at the age of five, a couple of bouts of peritonitis... I’m forty now, so look back on those years in and out of Great Ormond Street with relative fondness. My parents are the ones who went through hell.

My memories are good ones, and maybe because I talk about it in my stage act, I think of it positively, even flippantly. Since my bladder was patched up with bits of bowel, I consider that as I wasn’t born with it, but it’s now mine... it’s my step-bladder.

Taking the Tube on Tour

 I toured a stand-up show about this last year, calling it ‘Navelless Gazing’. It was a bit experimental. I’d told various toilet-based stories on stage before, and exposed my lack of bellybutton (my ‘smoothie’), but I’d never come out as a catheter user.

It was a mixed success. There were positive responses from medical audience members, or those whose partners or relatives had suffered with bladder cancer or congenital problems like mine. They were delighted that someone was talking about it publicly, and several emailed me saying they found it ‘cathartic’ – or maybe they meant ‘catheter-ish’ but autocorrect changed it for them. However, some audience members told me that while they enjoyed the show, the catheter information was ‘a bit much’. No pleasing some people. At least I didn’t demonstrate, or show them my cystoscopy home video.

The show is stored away for future use, if I pluck up the courage again. For now I’m happy doing cleaner jokes – or at least more sanitary.

Helping Hands

My kids asked me what era I’d like to have been born into: it has to be this one. If I was born a Victorian or a Tudor or even in the mid-twentieth century, I wouldn’t have survived more than a few days.

So I’ve been lucky to have been born when I was – and to have encountered experts like Philip Ransley, the brilliant urologist who essentially tried his ideas out on me and got it right. Thanks to great minds like him, I’m here to tell the tale, despite one or two fifty-fifty moments on the operating table.

The physical help I’ve had over the years has been second-to-none, and I’m ever conscious of parts of the world where such healthcare isn’t freely available. Understandably though, some of the non-physical areas have taken a while to catch up. A condition like exstrophy is still relatively new.

It being such a sensitive area, more emotional help would have been most welcome – especially in the teenage years, but also going into the twenties and beyond, since many of us urologically challenged are late bloomers. The focus was always on getting my waterworks working, but there could have been more attention and acknowledgement of the plumbing’s other, more fun use. Thankfully there are now Facebook groups where my fellow exstrophites can share woes and advice.

I’m now happily married with two children (conceived naturally) and a dog (conceived... well that’s not relevant), so it’s all worked out well in the end. It took a decade or two to get here though. We tried a two-pronged approach, nagging my GP for access to a psychosexual counsellor, as well as haranguing my consultant each year up in London.

I’m sure that today’s teens get a more holistic care package – or if they don’t, that they fight for the chance to get their bodies working as they want.

Now Wash Your Hands

I do feel lucky in all this – and aware that many with urological conditions suffer far more than me. That said, I’ve self-catheterised for more than thirty years, endured dire infections, emotional challenges and cruel mockery from classmates and lovers (those are two separate categories). It’s certainly made me a stronger, stoical person. And it’s given me a ton of material for the stand-up act...

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The Urology Foundation is so thankful for those like Paul, who are able to be open about what urology disease can mean for a person and their life.

Too often, urology disease brings with it psychological challenges and stigma. To handle this requires support from loved ones, some patience and courage, and often a little bit of humour.

Whatever your case may be, it’s important to remember that you’re not alone and that the more we talk about urology disease, the less stigma we’ll face.