The management of urinary symptoms can take various forms, depending on the diagnosis of the problem. In most cases initially this can result in a combination of strategies including:

• lifestyle changes (changing your everyday routines)
• specific exercises and bladder training
• using a continence product (e.g. absorbent pads) occasionally or regularly
• taking appropriate prescribed drugs.

In relation to more serious urinary symptoms, additional measures may be necessary including:

• catheterization – either intermittent self-catheterization, or on occasions a more permanent indwelling catheter
• surgical intervention.

Problems of frequency and urgency
These are two of the most troubling symptoms for people with MS. The issue of urinary urgency, often combined with wanting to urinate more frequently is one of the most difficult problems for people with MS earlier in the disease. It is usually caused by the bladder not storing the urine properly, or a lack of coordination between the storage and emptying process. It is wise to plan ahead whenever you leave home, and ensure that there are always toilet facilities within easy reach, but there are other aids.
As a self-management technique, pelvic floor exercises help to tone the muscles in and around your urinary system. This is sometimes called
‘bladder squeezing’ and helps to decrease frequency and urgency problems in some people. As a general rule, exercising your pelvic floor muscles is a very good idea, although other help may well be required. If the frequency and urgency continues to be a problem, which they may well do so, you may have to turn to drugs.
In effect many of the drugs which are used ‘slow’ the bladder by decreasing the transmissions to the nerves causing the bladder to empty. Oxybutin chloride (Ditropan) is an ‘anticholinergic’ drug that, in effect, blocks the nerve signals that trigger the muscles to release urine. This can be very effective, but is also associated with side effects, such as a dry mouth, because the drug blocks the nerve signals to the salivary glands as well. Indeed, without a dry mouth, it may be that the dose is too low. Unfortunately, you may become constipated, and at very high doses there may be problems with your sight. Often you have to experiment under the guidance of your doctor to find the most appropriate dose level controlling frequency and urgency with minimal other side effects. Another anticholinergic drug, propantheline, can be used, although trials have shown it to be slightly less effective than oxybutin. An antidepressant such as imipramine (Tofranil) may also be prescribed – not for depression, but because it has been found to have an effect in controlling urgency.
More recently, a drug called capsaicin – derived from red chilli peppers
– has been found effective in people with MS with relatively serious incontinence, who might find the side effects of the anticholinergic drugs unacceptable. Although this drug is still under evaluation for long-term safety and effectiveness, it appears to provide good control for quite long periods of time, i.e. 3 or 4 months from one administration usually in a hospital. It is not yet widely available, and it appears initially to make symptoms worse rather than better, before it takes full effect. So some people have to be ‘catheterized’ (see below) for the first few days after the administration. So far, people who have used it have found it sufficiently beneficial to come back for further administrations of the drug. Other natural products like ginger have also been tried. There is a vast amount of information on the internet that can be perused, but many of the studies have not been proven scientifically.
You may not need to take one of these drugs continuously, but you could use it for a particularly important event or journey when you need to avoid urinating for some time. For peace of mind on particular occasions, you could use a protective pad to absorb urine, in case you have ‘an accident’. As a final point, people who have urinary problems often also have mobility problems – the nerves controlling both legs and the urinary system are situated close together – so the difficulties experienced through frequency and urgency are often compounded.

Nocturia
Another problematic symptom for many people with MS is that they may have to get up to urinate several times in the night. Nocturia, as this problem is known, is quite common. The usual medication for nocturia is desmopressin (DDAVP Nasal Spray) which reduces urine formation. There are some circumstances where the drug should be used only very cautiously, or not at all – for example, in people with kidney or heart disease, or in older people. The antidepressant, imipramine (Tofranil), mentioned above in relation to treating urgency and frequency, taken just before going to bed, has also been found to be effective in many cases.

Incontinence
Incontinence, what appears to be the involuntary release of urine, may be a slight and an occasional problem in MS, or it may prove to be a continuous problem. However, in each case it provokes anxiety and concern, for socially as much as physically it can be a difficult and embarrassing symptom to have occur unexpectedly. This can be caused by a number of separate problems. Bladder spasms may be causing this difficulty – technically called ‘incontinence’ – or your bladder muscle
may be so weak that you have released urine before realizing it. In addition, sometimes you might not at first realize that you are wet because of reduced sensations in your pubic area.
The first step where minor and occasional incontinence is concerned is, as a means of ‘insurance’, to use a protective pad. Sanitary protection (absorbent pads) can be used, even if only for maintaining confidence when you are not near a convenient toilet. Pads and liners are available in a wide variety of shapes and styles to suit different people and different clothing styles, but there is much less choice when they are supplied on prescription. Waterproof undersheets and absorbent bed sheets can also be very convenient, to minimize the effect of occasional accidents.
If these procedures and/or the drugs mentioned above in relation to urgency and frequency do not work, other professional investigations may well be needed to determine the cause of the problems, and how best they might be managed.

Catheterization
Although your major concern may be incontinence, there may also a problem with urine retention in the bladder as well – for the bladder may not completely empty, which can lead to serious infection. Thus as an extra precaution, if one of the causes of the incontinence is retention of urine in your bladder, the use of ‘intermittent self-catheterization’ (ISC) might help (Figure 4.1).

Self-cetheterization

Figure 4.1 Self-catheterization.

ISC is used to ensure that the retained urine is regularly voided. Although you can do it yourself, a carer can also help you. A catheter (a thin plastic tube) is threaded through your urethra – the opening at tip of the penis, or just above the vagina – into your bladder, and this drains any remaining urine. You will need to wash yourself thoroughly before using this technique, and you may need to use a lubricant (something like K-Y Jelly) to assist the access of the tube, but modern catheters are low friction types and need no lubricant (such as
‘Lofric’ and ‘Speedicath’ types). You withdraw the catheter as the urine begins to stop. You should not use a catheter (tube) which appears to be worn, stiff or damaged in any way. You can do it while sitting on the toilet, or lying down. Undertaken regularly, several times a day, this method usually helps substantially. A nurse or doctor will explain how to undertake this procedure, and how to clean the catheter thoroughly. For the most part, although the procedure may seem very difficult, many people adapt well to it, as long as it is seen as a routine process. If you are able to write and to feed yourself, even if you have some eyesight problems, ISC should be possible. There is another reason why ISC can be of value, in that regularly undertaken, it is a means of ‘training’ the bladder to fill and empty as the urine is released: the bladder muscle contracts, expanding again as urine fills the bladder.

Urine retention and voiding problems
As we have noted above, many people with MS have problems not only with urgency or frequency, but also with some urine retention in the bladder. If this is the case, do not reduce your fluid intake substantially, because this will increase the risk of urinary infection (urine as a waste product is not being diluted). A useful rule of thumb is the color of your urine: if it is dark yellow to brown in colour, then almost certainly you are not taking in enough fluid.
There are some useful guidelines which should help you:

• Drink at least 2 litres (or just over 3 pints) of liquid a day.
• In general, an acid urine helps keep infections at bay.
• Decrease your intake of citrus fruits/juices.
• Foods and substances that neutralize acidity, including antacid preparations, such as sodium bicarbonate, should be eaten less often, as should dried vegetables.
• Increase your intake of proteins.
• Drink cranberry juice, and eat plums and prunes regularly.
Cranberry juice will also help to provide the vitamin C lost through reducing the intake of citrus fruits/juices.

Hesitancy and ‘full bladder’ feeling
Although this is a frustrating problem, often urination will start after a couple of minutes, so be patient! Sometimes tapping very lightly on your lower abdomen – but not too hard – will help; this often produces a reflex reaction of urination.
There have recently been trials of a hand-held vibrating device which, when held against your lower abdomen if you are still sensitive in this area, seems to work quite well by increasing urinary flow and leaving less urine in your bladder. It is probably most useful for people with relatively mild MS.
Of course, other time-honoured techniques may work, including turning a tap on and hearing the sound of running water! A more direct method is to stimulate the urethra gently, at the tip of the penis or just above the vagina, with a clean finger or damp tissue.
If you have the feeling that your bladder is still full, this may need further investigation. It is important that your bladder is as empty as possible after you have urinated, not least to try and avoid an infection. Intermittent self-catheterization (ISC) may help, as may anticholinergic drugs. If you need further advice, make an appointment to see your doctor or, if possible, your neurologist or continence nurse/advisor.

Urinary tract infection
If urination is painful or associated with a burning sensation, and even more so if it smells unpleasant and is cloudy, the chances are that you have a urinary infection. In this case seek medical advice as soon as possible. In the meantime you should try and increase your fluid intake.
Kidney infections are particularly worrying in MS: they may be associated with both abdominal pain and a high fever, and require a tougher drug approach, perhaps with intravenous antibiotics. The problem is that, once infections get a hold in the kidneys, there is a substantial risk that they pass unchecked into the bloodstream, and cause major, even on occasions life-threatening, difficulties. You may also experience increased frequency and urgency with an infection. On the other hand some urinary infections in MS can be almost symptomless, and thus periodically – and especially if you feel that you suffer from some problems of urine retention – ask your doctor if you could have a urine test for infections just to make sure.
For people who seem particularly liable to urinary tract infections, a long-term low-dose antibiotic might be given occasionally to eliminate or suppress bacteria.

General precautionary steps to prevent bladder infection could include:

• Attempting to empty to bladder as often as possible – holding urine in the bladder for long periods should be avoided.
• Women should be careful to wipe from front to back and to avoid underclothes made of synthetic materials, which can trap infection. It is also a wise precaution to empty your bladder both before and after sexual intercourse.
• You need to ensure that you take adequate amounts of fluid (see above).
• You might also consider taking substantial does of vitamin C because this will make your urine more acid and less liable to bacterial growth.

Indwelling catheterization
When urinary difficulties become a real problem, a permanent catheter can be fitted. Although some may think this is more convenient, it is not an easy step to take for many others; some actually think of it as the hidden equivalent of being in a wheelchair. Furthermore, medically, it is best if some other way can be found to manage urinary problems. An indwelling catheter opens up the inside of the body to the continual possibility of infections from which it is normally protected, even during ISC, and it can be particularly dangerous if you have a weakened immune system. Therefore, in principle, the less time that people with MS use an indwelling catheter, the better. If the MS becomes more severe, there may be no option, particularly when you cannot undertake ISC, or when drugs or other strategies do not appear to deal with the problem.
How it works. An indwelling catheter can be inserted through the urethra (like ISC), or through a specially constructed surgical opening in the lower abdomen, above the pubic bones (‘suprapubic catheterization’). Whichever route is chosen, the catheter is inserted into the bladder, and then a small attached balloon is inflated (which you won’t feel) and filled with sterile water in the bladder itself. Through the other end, on the outside of the body, urine is continuously drained into a collection bag.
Increasingly, the medical preference is to insert the catheter through the special opening in the lower abdomen. This is because a permanent catheter through the urethra may enlarge, change or disrupt the urethral opening, and make it difficult to maintain control of the urine. An indwelling catheter like this can cause problems with sexual activity and we deal with this elsewhere in Chapter 5. Even if a catheter is inserted through the lower abdomen, there are still likely to be some problems:

• Infection can occur around the site of the insertion.
• The catheter can periodically become blocked.
• The catheter needs to be changed every few weeks, and sometimes more frequently.
• Kidney stones can form.
• Catheters can sometimes become detached or loosened and thus require monitoring; this has to be done by someone else if your MS is severe.

It is important to increase fluid intake if you have an indwelling catheter to help prevent infections – these occur more frequently if you don’t drink enough.
An indwelling catheter can be used on a temporary basis, or for particular occasions when other means of urinary control are difficult, but you need to discuss all this with your doctor or continence nurse. Each insertion runs a risk of introducing infection and it has to be undertaken as meticulously as possible.

Surgery and urinary problems in Multiple Sclerosis
Surgery is very rarely performed to ensure urinary control in MS – indeed it seems to offer no major improvement in such control. Several procedures are possible, but are only undertaken on rare occasions when almost all else has failed, and a more or less intractable problem remains. There is another factor here: MS, over time, is a progressive disease, and it is possible that once you have undergone some surgery, other surgical procedures may then be needed later, to manage further problems that might arise.

Other management techniques
In addition to trials of further drugs that may be of value to people with MS, some other procedures or techniques may help. Research has suggested that bladder training – involving working out a schedule of regular urination on the basis of ultrasound assessments – together with ISC, may be helpful. Because of the association between CNS control of leg function and urinary function, an appropriate exercise regime may help the urinary function indirectly.
Bladder training generally involves a series of educational and training exercises. It is important to note that some substances such as caffeine and alcohol can cause additional urgency with frequency, as can one of the common artificial sweeteners – Nutrasweet. Eliminating these products may help substantially. Training may involve you resisting or trying to slow down the urge to urinate so that urination
can be undertaken more on a kind of timetable, perhaps every 1–2 hours. Urination can also be partly controlled by how and when drinks are taken.
Electrical stimulation of various kinds comes into vogue from time to time to help with urinary control. A few of these techniques, some of which use small portable instruments, may prove to be of some value:

• TENS (transcutaneous electrical nerve stimulation)
• DSCS (dorsal spinal cord stimulation)
• ESES (epidural spinal electrostimulation), and
• SES (spinal electrostimulation).

There is considerable energy being devoted to developing and testing some of these procedures. All these can be discussed with your continence nurse.