Bladder problems are very common in people with MSA and are often amongst the first symptoms of the illness.
Even if bladder problems cannot be cured, they can be managed and this factsheet explains how
How the bladder works
Urine is produced in the kidneys and passes down tubes called ureters into the bladder.
The bladder, in which urine is stored, is balloon shaped. It is situated low in the abdomen behind the pubic bone. From the bladder the urine leaves the body through another tube, the urethra. The valves or “sphincters’” at the base of the bladder makes it watertight and stop urine leakage.
The bladder can hold about one pint (500ml) of urine but a reduction in its capacity is a common feature of many bladder disorders. The first sensation of needing to go to the toilet happens when the bladder is about two thirds full.
It used to be thought that the bladder was merely a ‘waterproof bag’ but it has been shown that the walls of the bladder are made up of several layers, some of which have the sole function of generating nerve signals to convey information about the bladder’s contents to the spinal cord and the brain. If it is socially appropriate to go to the toilet, the brain sends messages down the spinal cord to relax the sphincter (the valve which opens the bladder) and to contract the bladder wall muscle (the detrusor) so that urine is passed from the urethra.
It is normal to pass urine between four to seven times during the day and once at night.
This may sound straightforward, but it is a very complex process and needs the bladder, the brain and all the nerves between them to be working in co-ordination. Being able to control this process is what is required for continence.
What goes wrong?
Bladder problems may occur for reasons such as prostatic outflow obstruction in men and stress incontinence in women, so it is important to consider other possible causes before putting them all down to MSA. This information however, concentrates on the common bladder problems arising in MSA.
MSA seems to affect the neurological controlling centres of the bladder in quite a selective way. This is why bladder symptoms occur as an early feature of the disease and why they may become particularly troublesome over ensuing years. People with MSA get a combination of an overactive bladder, incomplete emptying and sphincter weakness. Some of the potential problems are:
- Urgency – needing to go to the toilet suddenly and quickly. This is due to the bladder contracting of its own accord – ‘bladder overactivity’. If you cannot reach the toilet in time you may suffer urge incontinence. However, urge incontinence is a common symptom in the general population, not just in people with MSA
- Frequency – going to the toilet a lot (more than eight times in 24 hours) but only passing small amounts of urine. This can either be due to the bladder’s overactivity or because you are not emptying it completely
- Double voiding – needing to pass urine again very soon after just doing so indicates your bladder did not completely empty the first time. This sometimes is accompanied by a feeling of incomplete emptying
- Urine infections – especially if you have incomplete bladder emptying. Urine infections often make people feel very unwell and can make other symptoms, such as postural hypotension (a sudden fall in blood pressure) worse. The early use of antibiotics to treat urine infections is very important for people with MSA
- Constipation – A bowel full of solid stool causes pressure on the bladder that will increase the problems of poor bladder function.
Problems with going to the toilet can also be affected by other MSA symptoms:
- If you have Postural Hypotension as a symptom of your MSA you are more likely to pass lots of urine in the night
- Accidental leakage, because of difficulty or slowness getting to the toilet or adjusting clothing in time.
What investigations might be done?
Trying to find out exactly what the problem may be is an important starting point for getting appropriate treatment. When you see a nurse or a doctor they will ask you questions about your general health, how much you drink, the colour and smell of your urine and your bladder problems, including whether you have had any accidental leakage.
You may be asked to produce a sample of urine to test for a range of different things, including signs of infection. The sample can be sent to a laboratory for detailed testing or tested immediately with special urine testing sticks. The sticks give quite a good indication as to whether or not the urine is infected, but a more reliable result comes from the laboratory. The laboratory result can also test for the best antibiotic to treat the identified infection, though this can take a few days to get the result.
Measuring the volume and frequency of passing urine can help determine what your exact problem is. You may be asked to keep a diary for a few days, recording everything you drink and how often you pass urine and even measuring the volumes.
The other investigation that is very useful is checking how much urine is left in your bladder after you have passed urine, using either a small ultrasound machine or a catheter. Any urine left is called ‘post void residual (PVR).
All these tests can be done at home or at your GP’s surgery or local health clinic. . If more detailed testing is needed, you may be referred for urodynamics at the hospital. Urodynamics are a range of procedures that test how well your bladder fills and empties.
Urological treatments for several common bladder problems may involve surgery but operations in people with MSA are rarely the solution. It is not uncommon for people with MSA to have had some urological surgery, which may not have helped very much, before the neurological diagnosis is recognised. Further surgery in this case is usually inadvisable but do consultant your specialist. The urology specialist will advise you of the options to manage the bladder problems you have.
Who can help?
District nurses and Community Matrons can give advice on continence issues and will refer on to Continence Advisors (also known as Bladder and Bowel Service in some areas) as appropriate.
Continence Advisors are healthcare professionals who have specialist training and experience in managing bladder and bowel problems. Continence Advisors work in hospitals, health centres and in the community. Many accept self-referrals over the telephone, although some may ask that your GP write to them. The Bladder and Bowel Community helpline will have details of your nearest Advisor (see ‘Helpful Contacts’ at the end of this factsheet).
Your GP or specialist will also be able to help.
The Trust’s MSA Health Care Specialists are also available to discuss bladder problems and treatment (see ‘Helpful Contacts’).
Advice
Sensible advice about fluid, toilet habits or diet is often very useful in preventing problems and managing symptoms.
Maintain a healthy bladder. This means drinking plenty of fluid (about eight large cups or glasses each day). Drinking too little fluid can result in your urine being very dark and concentrated which can irritate your bladder and cause problems. There is some evidence that drinking cranberry juice may reduce urinary tract infections slightly and continence advisors recommend reducing your intake of caffeine and fizzy drinks.
Be comfortable on the toilet, especially in public lavatories. Ladies should sit rather than hover (carry some wipes with you to do this). Where possible it may be better for men to use a toilet cubicle for increased privacy and to have the option to be seated if balance is difficult.
Some people find bending forward whilst sitting on the toilet and gently pressing or slow firm tapping over the bladder at the end of the flow helps to squeeze out any urine left in the bladder.
Choose clothes that are easy to undo or take off, for example Velcro fastenings rather than zips, to reduce time taken once at the toilet.
Medication
Medication, called anti-muscarinic drugs (also known as ‘anti-cholinergics’) allow the bladder to relax and fill closer to capacity before needing to empty. These can reduce the symptoms of urgency and frequency. Ideally assessment of the PVR should be undertaken before deciding if these drugs would be helpful.
DDAVP (desmopressin) is a hormone that prevents urine production for several hours after it has been taken. It can be useful if taken at night as it can stop the need to get up to go to the toilet, which improves sleep. It comes in a tablet and nasal spray but it must only be used once a day and is not recommended for those aged over 65. Your GP should monitor your blood regularly as this medication can affect your sodium and potassium levels. It may be useful for people who also have postural hypotension as a symptom.
Research suggests that botox injections into the bladder can be helpful for people with bladder problems caused by neurological disease. This is a treatment done by the Urologist service so speak to them for further information on this.
Regular or daily laxatives may be required if constipation is contributing to bladder problems.
Equipment
An Occupational Therapist can help to make it easier to use the toilet at home. Adjusting the height of the toilet, adding grab rails or even creating a downstairs toilet for ease of access are all worth thinking about.
Community Nurses can provide urinals or commodes for times when getting up and the distance to the toilet takes too long to get there or is unsafe to do so.
There are a wide range of continence pads available with varying absorbency suitable for day or night. These can be used by men and women and can be either disposable or washable. Some are available on prescription and the Continence Nurse or Community Nurse can arrange to supply them to you. Small protective bed sheets e.g. Kylie sheets that are easily washed and dried can be useful. These can be purchased online or from most pharmacies.
Some men find urinary sheaths useful. They fit over the penis like a condom and attach to a urine collection bag via a tube. These are not usually used for the whole day, as they can cause skin irritation, but they can be useful when out and about or overnight.
Catheters are thin plastic tubes that can be passed into the bladder to drain it and can either be ‘intermittent’ or ‘indwelling’ (left in for some days or weeks).
Intermittent catheters are inserted into the urethra to reach the bladder, the urine is drained (which only takes a few minutes) and then the catheter is removed. A Continence Advisor will teach you how to do this for yourself or possibly show your carer how to do it for you. Intermittent catheterisation is a very useful means of improving bladder control if incomplete emptying is a significant problem.
If a catheter is needed and using an intermittent catheter is not manageable then an indwelling catheter can be inserted. Indwelling catheters are also inserted via the urethra or through the abdomen (a supra pubic catheter). The catheter can either drain urine continuously into a bag, or a valve can be attached to enable intermittent drainage of the bladder directly into the toilet or bottle/jug.
Although no one likes the idea of using a catheter many people are surprised at how easy they are to use. Both types of catheter are discretely hidden under clothing. Use of a catheter can reduce bladder problems and reduce the anxiety of finding or needing to be close to a toilet. However, for many people the decision to use any kind of catheter needs to be given plenty of thought and discussion.
Other help
‘Can’t wait’ card: This credit card sized card can be shown discreetly to gain easy access to toilets when you are away from home. It is free and copies are available from the Bladder and Bowel Community.
The National Key Scheme: Initiated by RADAR, this offers independent access for disabled people into over 4,000 locked public toilets around Britain. Ideally all accessible toilets should be kept unlocked, but the scheme is used where it is necessary to lock the toilets to maintain their cleanliness and to protect them from vandalism and misuse. Keys can be purchased online from your local council or Disability Rights UK – see ‘Helpful Contacts’.
Social Services: In some cases financial assistance towards laundry equipment, e.g. a washing machine, or to have clothes and bedding laundered, may be available. A social worker or benefits advisor can provide more details.
Sexual activity and continence: Bladder problems don’t mean the end of intimate or sexual relationships. Some Continence Advisors are experienced in offering advice or treatment to enable sexual activity to be maintained. They recognise that for some people this is a very important part of life so will not be surprised or embarrassed if you want to talk about this with them. During a visit, they may ask you directly if you are experiencing any problems with sexual function so you may want to prepare your reply. We also have a factsheet about sex and relationships which is available by contacting the MSA Trust office.
Useful contacts
The Bladder and Bowel Community
The Foundation provides information, advice and expertise to anyone with bladder and bowel problems.
Telephone: 0800 031 5412 (Medical Helpline)
By post: Bladder & Bowel Community, 7 The Court, Holywell Business Park, Northfield Road, Southam CV47 0FS
Website: www.bladderandbowel.org
Bladder and Bowel UK
Offers advice on bladder and bowel health issues, continence promotion and options for managing incontinence, as well as signposting to local services
Telephone: 0161 214 4591
By post: Burrows House, 10 Priestley Road, Manchester, M28 2LY
Website: www.bbuk.org.uk
Disability Rights UK – National key scheme for locked toilets.
Telephone: 020 7250 8181
By post: Disability Rights UK, Ground Floor, CAN Mezzanine, 49-51 East Road, London N1 6AH
Website: www.disabilityrightsuk.org
Living Made Easy (formerly Disabled Living Foundation) – This is a national charity providing equipment advice and information for disabled people.
Telephone: 0300 999 0004 (Helpline)
By post: Disabled Living Foundation, Unit 1, 34 Chatfield Road, Wandsworth, London SW11 3SE
Website: https://livingmadeeasy.org.uk/ Bowel Management – The factsheet titled ‘Bowel Management and MSA’ is available from the Trust office.
