Living with incontinence

Katherine Cole, University of Cambridge School of Clinical Medicine, Addenbrooke's Hospital, Hills Road, Cambridge, CB2 0SP

Imagine being reluctant to go anywhere for fear of embarrassment at what your body might do. But your family needs food, so you put on a brave face and go to the shop down the road. You’ve been walking around the supermarket for ten minutes, enjoying browsing the special offers, when it begins: the feeling of warm dampness between your legs, gradually spreading downwards. You glance at the wet patch steadily growing across the front of your jeans. It’s happened again: another outing is ruined. You take off your jacket and tie it round your waist in an attempt to hide what’s going on. Maybe if no-one can see it, it will go away. You abandon your half-full shopping basket – someone else can come out later and buy some food; you need to get home now. You walk through the door, head held high, but inside crying with shame and frustration.

The journey home is short, yet with every step you can feel more leaking. Your jacket is hiding it well, but by the time you get into your hallway, your jeans are soaking. You stand in the bathroom and peel them off with your knickers, rinse them through and hang them up to dry – a familiar routine. Then you get a fresh pair and find another pad (hateful, uncomfortable nappy that doesn’t do much good) before collapsing in your favourite armchair with a cup of tea and the TV remote for comfort. Perhaps the friend you were due to meet in the coffee shop later will be happy to come to the house instead – there’s no way you want to risk going out again. Once is enough for one day – that means only one optimistic thought that maybe you’ll be OK today, only one heart-sinking moment of realisation at what’s happened, one feeling of mortification, one uncomfortable wet sensation, one waddle home, one set of clothes washed and changed. One overwhelming feeling that you’re a failed woman, not independent, no better than a baby.

You try to be positive. You’re only 40 years old, still quite young and attractive really, and pretty healthy considering your little problem prevents exercising. You’ve got three lovely children, nearly all grown up now, each born naturally. None were particularly big babies, and there were no complications in any of the labours. You feel they can’t be entirely to blame for what’s happening to you now. And anyway, you wouldn’t swap them for anything. Then there’s your husband: he’s lovely and very supportive, despite your sex life being virtually non-existent now – it’s just too awful to leak when you’re in the middle of a passionate moment. They’re a great family, and they’re very understanding, but you can’t help feeling that you’ve let them down by becoming so virtually housebound and by being an embarrassment when you do venture out. And you’re much more miserable now than you used to be – that must affect them all too.

You think back to a time before this all began – only about six years ago. You used to be very active, going jogging in the mornings after dropping the kids off at school, working three afternoons a week in the café up the road, keeping busy running the house, shopping, cooking and cleaning for the family, driving the kids to their various activities, meeting friends for lunch and even playing tennis for a local club. When you laughed – which you used to do a lot more often – there’d sometimes be a little drip down below, but then which mother doesn’t experience that from time to time?

However, gradually you started to notice that you could never make it to the toilet in time when you were out running and that you were getting more and more damp the further you went. You stopped jogging, and quit tennis too. Then you started feeling the odd drip just walking round the town, and a positive gush when you coughed or laughed. The GP sent you to a pelvic floor exercise clinic, and you religiously did your daily exercises, but little seemed to improve. The leaking got worse and you had a few embarrassing accidents – one in front of your daughter’s friends which mortified both her and you. The pads from the chemist’s helped a bit, but got uncomfortable once they were wet, and never seemed to be able to hold it all anyway.

Eventually you were referred to the hospital and offered an operation – a Burch colposuspension. You had high hopes – one of the friends you’d summoned up the courage to tell about your problem had had it done the year before, it turned out, and she’d had a new lease of life once everything was healed up. And for a few months after the op, you did too – you resumed gentle jogging, felt able to socialise again, didn’t have to always check how far away the toilet was, got through a whole day without changing your knickers. Yet the freedom was short-lived, and gradually the problems returned with a vengeance. Now if you go more than half an hour without a trip to the toilet, you’re guaranteed to find yourself sitting in a puddle. You can tell your bladder is filling; you just can’t seem to stop it emptying.

This cycle of discomfort, embarrassment, and a gradual withdrawal from life has been going on for long enough. But now there is a light at the end of the tunnel – a different surgeon has agreed to operate on you, performing a new procedure to hold your bladder up and keep your urethra closed by using a band of tissue from your own stomach. Sounds weird, but it’s your last chance. And even then, it’s a slim one – the surgeon has said that only 65% of these operations achieve the desired outcome. For some women, nothing changes, and for others, they end up with the reverse problem and are unable to pass any water at all. Aware of this risk, you have been learning to self-catheterise for the past few weeks, in case you have to do this permanently post-surgery. Inserting a tube into yourself and carrying a bag of your own urine around with you is a little undignified, but actually, you secretly much prefer this to the unpredictability of your bladder left to its own devices. At least with the catheter you know where your urine is and when you’re going to get rid of it – you feel you have regained some of the control over your own life that you’d gradually lost. In fact, if the operation does lead to you needing this catheter forever, that would be an improvement on how things are now. This realisation brings home to you just how bad things have become.

So as you sit in your chair, mulling over how things have been for the past few years, and still smarting a little from the incident in the supermarket earlier, you feel a sense of excitement. True, it is mixed with apprehension and doubt and fear, but it is excitement nevertheless. When you come home from the hospital next week, your life will be different. It will be easier and less embarrassing and freer and better. You refuse to let the chance of the operation failing cloud your thoughts as your mood lifts. After six long years of suffering (does that word even begin to cover it?) from incontinence, you are about to get your life back!

Now, time for another quick trip to the loo...