The combination of problems in bladder incontinence in MS doesn't make dealing with things any easier. However, there is a sound approach to first-line continence management.

Dr Clare Fowler has extensive contact with people who have MS. As Consultant in Uro-Neurology at the National Hospital for Neurology and Neurosurgery, many of her patients come to ask for practical help with incontinence. Patients talk to her about their feelings to do with incontinence as well.

Anna, a young woman with MS, says: 'When my bladder first gave up on me, I felt wretched and miserable. When I got home, I cried like a baby for two hours. I was crying because I felt like a baby. I had lost control of one of the most basic physical functions and the humiliation was heartbreaking. Even though I was the only one who knew, it felt like it was written all over my face.'

If there are inadequate explanations - and inadequate investigations - then things aren't made any easier.

Drink more?

Anna says of a friend: 'All the experts said she should drink more. She was confused. Surely that would make the incontinence worse? The years went by and she didn't understand why they were still saying "Drink more", so she didn't. Only last year she went to a clinic where she was told why they were still saying it. (If you don't, the urine gets concentrated and irritates your bladder so your bladder expels it, so you still want to go all the time and may get more infections, too.) My friend is angry - angry that no-one had explained that before.'

First, find your combination before a treatment is prescribed

There can be confusion, too, about the combination of problems found in bladder incontinence in MS. If problems of urgency (the uncontrollable need to pee) and frequency (wanting to go to the loo, say, every few minutes) are treated without investigating if the bladder is also emptying properly, medication may make things even worse. But, with proper investigation, the right medication and some self-help, these first-line symptoms can be managed.

1. An overactive muscle

The most commonly reported problem tends to be urgency. 'Generally, it is a sign of an underlying problem where the detrusor muscle in the bladder becomes overactive and contracts spontaneously,' says Dr Fowler. Often the detrusor muscle will contract when the bladder has only a low volume stored, and so there can be a problem of frequency, too.

To treat an overactive detrusor, doctors are likely to prescribe anticholinergic drugs like Oxybutynin to moderate the muscle and it's tempting to think this might end the problem (although it might lead to side-effects like dry mouth). However, that same drug will make the detrusor less effective when it does contract to expel fluid, and may cause urine to be left behind in the bladder. If urine is left behind, then the capacity of the bladder is reduced. And this can exacerbate the original problems of urgency and frequency!

2. Muscles not working with each other

In addition to an overactive detrusor, another problem with muscle co-ordination in the bladder could also be present and mean the bladder cannot empty properly. Bladder muscles (detrusor and sphincter) should work in harmony and alternate in turns between relaxing and contracting. However, in MS both muscles may contract at the same time.

'It generally comes as a surprise to people to learn that, one way or another, their bladder is not emptying properly,' says Dr Fowler, ‘and incomplete emptying is extremely common in people with MS. Before a treatment is prescribed for the common problems of urgency and frequency, you have to look first of all at whether a person is emptying properly or not.'

3. The proper investigation

Says Dr Fowler: 'The single most important investigation in establishing incomplete emptying is to measure how much urine is left behind. This can be done by ultrasound or by intermittent catheterisation. If the residual volume is more than 100 ml, efforts must be made to improve bladder emptying before drugs like Oxybutynin are prescribed.

'Remember, too, that if a person is taking a drug for urgency and frequency but notices after a while that their symptoms return, it's advisable to repeat the measurement of residual volume because this may have increased as a result of the drug.'

Dr Fowler is positive about the ability of drug treatment as well as self-help to provide effective first-line management for bladder incontinence in MS. When there is a problem of high residual volume, she recommends people learn intermittent self-catheterisation. She says that it can make all the difference and the National Hospital offers it to as many people as possible.

Senior Continence Adviser at the National Hospital, Collette Haslam, has the role of explaining the techniques of intermittent self-catheterisation to people. 'The thought of doing it is always worse than doing it and people can usually be encouraged to see if it works for them,' she says. 'It can mean getting your life back.'

Try doing what other people do

Anna's advice is to try doing what other people do to help their incontinence. 'You may feel there is nothing you can do about your faulty nerve pathways and sometimes you may be right. But you can do pelvic floor and anal sphincter exercises, avoid tight clothing, drink less caffeine and more water and cranberry juice. Exercise helps the bowels to work properly, and we all know what getting cold does. It really is worth asking the health professionals what they would suggest and getting educated about this.

'Believe it or not, I have experienced nothing but understanding from trusted friends. This is not something you can talk about with just anyone - please don't risk being made to feel even worse. If there is nobody you can ring, talk to someone impartial. The most helpful thing about talking is that it helps you sort out your own feelings and thoughts. Being heard is so valuable.'

Further Information

Continence Foundation Helpline: (+44) (0)845 345 0165
Monday to Friday, 9:30am to 12:30 pm

MS Society Helpline: 0808 800 8000

Thanks to Dr Clare Fowler and Collette Hasiam at the National Hospital for Neurology and Neurosurgery, Jill Ward at Parkside Health Trust, and Anna Bentley.