Urinary Incontinence

Many people, including those with Multiple Sclerosis, find that their bladder becomes troublesome at some point in their lives.  However, this does not mean that nothing can be done to help by correcting or minimizing the difficulties.  With a little forward planning and use of expert medical and nursing advice when needed, most problems can be brought under control. 

MS and bladder problems

The bladder has complex nerve controls which are easily disrupted.  This can lead to an overactive or “unstable” bladder, which needs emptying very often (frequency) and in a hurry (urgency).  If a toilet is not reached in time, urge incontinence can result.  Alternatively, nerve damage can mean that the bladder does not empty properly, leading to overflow incontinence and other possible bladder problems or a bladder which fluctuates between the two patterns. 

It is important to realise that bladder problems are extremely common in the general population, not just in those who have MS.  It is thought that over 3 million adults in Britain are incontinent and half a million wet the bed.  If you have bladder troubles, MS may be the cause, or one of the causes - but there are many other possible causes.  Do not simply assume that MS is the cause - symptoms should always be properly investigated and an accurate diagnosis made. 

Helping yourself and preventing problems

Generally, keeping as fit and active as possible will have a beneficial effect on your bladder.  It is important to try to avoid constipation as this disrupts the bladder.  Do not get into the bad habit of emptying the bladder more and more often “just in case”.  You may find that the habit becomes very hard to break and you end up with a very sensitive, small capacity bladder. 

Many people are sensitive to caffeine and, if you pass urine too often, it is worth trying decaffeinated drinks to see if this reduces the frequency. 

Drug treatments

Urgency, frequency, and urge incontinence may be controlled by drugs which dampen unstable bladder muscle contractions.  The quest for an effective drug, without side effects, has not yet been successful, but the search continues.  The potential for instillations directly into the bladder, with local rather than systemic action, is under investigation. 

Detrol (Tolterodine (TOLE-tear-oh-deen) and Oxybutynin (ox-i-BYOO-ti-nin) are probably the most successful drugs available at present although some people also respond to propantheline or imipramime.  It is likely that you would be started on a very low dose, gradually increasing until an effect is achieved.  Side effects such as a dry mouth, disrupted vision and constipation are very common.  Detrol is the preferred drug prescribed to date (over Oxybutynin) because it has fewer side-effects. 

Indeed, constipation should be anticipated and preventive measures implemented as soon as a person starts to take the medication.  Drug treatment for urgency will usually be taken in combination with a bladder training programme. 

Bladder training

People with urgency and frequency will often benefit from a training programme.  A baseline chart of toilet visits is kept for 4-7 days and then the time interval between visits is deliberately but gradually extended.  This will only work if you really believe that it will.  It is a good idea to obtain professional advice on bladder training starting with the GP and Continence Adviser. 

Intermittent catheterisation

Many people with MS fail to empty their bladders completely and they will not necessarily know that.  One of the best ways to manage the problem is self-catheterisation, by which the person learns to insert a thin plastic tube (catheter) into the bladder once, or more times a day, to drain out the excess urine and prevent overflow leakage.  Although this can seem quite alarming at first, most people find learning to catheterise very easy even if they are physically disabled.  Where a person cannot manage to self-catheterise a caregiver may be willing to learn the technique and do it for them.  Many people with MS have had their lives transformed by using intermittent catheterisation. 

Pelvic floor exercises

These exercises may help by strengthening the muscles around the bladder and bowel outlets, making more likely better control of any tendency to leak.  This is especially relevant to women, who naturally have a relatively short bladder, perhaps weakened by childbirth, and may have stress incontinence.  Like any other muscle, the more you use and exercise it, the stronger the pelvic floor will be.  A physiotherapist can help where self-help is not practicable and the Continence Foundation (in Britain) can provide instructions on how to do these exercises and on the use of vaginal cones.  The use of mild electrical stimulation may also be recommended or your doctor may prescribe hormone cream or tablets.  In cases of very severe leakage, or where a prolapse is involved, an operation may be suggested.  There will be no compulsion to accept this operation but it can offer a lot of help in these circumstances. 

Complementary therapies

There has been very little research on the use of these therapies for dealing with bladder problems and virtually none that is specific to multiple sclerosis.  However, some people have had good experiences and report success with a wide range of treatments.  Hypnotherapy, acupuncture, homeopathy, reflexology, and others have, in their turn, all helped people and may be worth a try, particularly if more “conventional” therapies have failed. 

Managing incontinence

Where, despite every effort, bladder control remains unreliable, ability to lead a life will depend on selection of the most appropriate products to manage the problem.  No one product suits everyone for people are of different shapes and sizes, have different patterns, and amounts of incontinence, and have varied personal preferences.  A range of absorbent products, washable or disposable, for body or bed, and in different sizes and designs is needed.  People with very heavy incontinence may use an all-in-one diaper style garment but this can make toileting more difficult, adding to the problem and certainly making any degree of independence unlikely.  Men may use a sheath and bag collection system. 

Catheters

The use of an indwelling catheter seems to be out of favour lately, and rightly so in most instances.  There is no doubt that a long-term catheter can be associated with many problems and inconveniences. 

However, they still have a place where there is severe urinary incontinence or if toileting involves much difficulty and discomfort because of disability.  In such circumstances a catheter is worth considering.  Some people find that a catheter enables them to lead a much more active life as well as being more dignified than having to rely on carers to deal with the incontinence perhaps many times each day. 

When it is decided to use a catheter, it is important to find both a brand or style of catheter and a care routine that minimises the problems for the user and the carer.  A suprapubic catheter which does not use the bladder outlet but enters the bladder via the abdominal wall, is often preferred. 

Incontinence and sexual activity

Contrary to what some people believe, those who wear a catheter all the time can still have sex.  It is likely that a suprapubic catheter will be more comfortable than the kind that uses the bladder outlet.  An alternative is to learn how to remove the catheter for the time required and then replace it with a new one, paying attention to safety, hygiene and comfort.  If neither of these alternatives is practicable, women may find it most comfortable if the catheter is taped to one side and men fold back the catheter holding it in place with tape or by wearing a condom.  KY jelly may be needed to improve lubrication. 

People with a bladder problem may find that although they have a tendency to leak a little during sex, it need not be a barrier to enjoy a fulfilling sexual relationship.  The leakage can be due to direct pressure on the bladder, because an overactive bladder is contracting, or orgasm, any of which may lead to a reluctance to relax and enjoy sex.  It may be possible to reduce or stop one or more of these problems by controlling medicine - ask your doctor to advise. 

Worries about these potential embarrassments and fears that they may be a “real turn-off” are natural and can mean that many people try to avoid all intimate contact. 

Discussing these feelings with your partner may reduce the embarrassment. 

Maintaining a regular bladder and bowel programme is the best protection against leakage for most people.  It may help to drink less than usual for a few hours before sexual activity and, if possible, empty the bladder beforehand. 

Personal hygiene

Maintaining a high standard of personal hygiene is particularly important for anyone with a continence problem, both men and women, and can result in increased confidence about physical attractiveness.  Genital washing at least daily is essential.  The use of talcum powder or cream should not be too generous or discomfort may occur. 

Conclusion

It can be very distressing to experience problems of continence but it need not simply be something to be suffered - you just may not have to put up with it!  A combination of preventive measures, self-help, and medical advice will enable most problems to be brought under control. 

Written for MSRC by Christine Norton, Managing Director, The Continence Foundation

The British Continence Foundation

Your GP, nurse or continence adviser are first contacts for specialist advice and help. 

You can contact the Continence Foundation, a charity providing information and education for professionals and the public which publishes a range of leaflets and has a mail order book service, and In contact, a self-help organisation which also publishes a quarterly newsletter.  Both can be contacted at 307 Hatton Square, 16 Baldwins Gardens, London EC1N 7RJ. 

There is a confidential information helpline staffed by nurse continence advisers between 9.30am and 4.30pm Monday to Friday.  Call 020 7831 9831. 

Charter for Continence in Britain

The Charter for Continence presents the specific needs and rights of people with bladder or bowel problems.  It outlines the resources available and the standards of care that can be expected

As a person with bladder or bowel problems you have the right to:

• Be treated with sensitivity and understanding. 
• Become continent if achievable. 
• Receive a thorough individual assessment of your condition by a doctor or nurse knowledgeable in this aspect of care. 
• Request specialist advice about continence care. 
• Be provided with a clear explanation of your diagnosis. 
• Participate in a full discussion of treatment options, their advantages and disadvantages. 
• Be provided with full, impartial information on the range of products which are available and how to obtain them. 
• Expect products to have clear instructions for use. 
• Receive regular reviews of treatment and be given the opportunity to change treatments if your condition has changed. 
• Be made aware of any treatments or products as they become available. 
• Be provided with a personal contact point to give you on-going advice and support. 

Source: The Continence Foundation “Commissioning Comprehensive Continence Services - Guidance for Purchasers” (May 1995)