Bladder problems are common symptoms in multiple sclerosis and can have a big impact on many aspects of your everyday life. Around 75 in every 100 people with MS experience bladder problems, however this is an area where successful treatments are available and straightforward lifestyle changes can make a real difference.
You may feel embarrassed or uncomfortable talking about bladder problems, but your health professionals will have lots of experience talking about these kinds of symptoms. With the right information and support, the majority of bladder problems can be successfully managed so they no longer impact, or have as much impact, on your daily life. This can include making simple changes to what you eat and drink, taking medication or using a catheter.
What are bladder problems?
Bladder problems can be divided into two types; those relating to the storage of urine and those relating to the emptying of urine. Some people experience a combination of these symptoms.
- Problems storing your urine – storage problems can lead to symptoms such as needing to go to the toilet immediately (known as urgency) and needing to go to the toilet often (known as frequency) during the day and night (called nocturia). Occasional bladder accidents (called incontinence) may also occur where bladder control is lost and urine leaks out.
- Problems emptying your bladder – emptying problems can result in symptoms such as difficulty passing urine (known as hesitancy) and a feeling of the bladder not emptying properly (known as retention).
If you're worried about bladder problems and they're affecting your life, don't hesitate to contact your health professional. Specifically this might be if:
- you experience bladder accidents, and you avoid important activities because of it
- you often feel an urgent need to urinate and rush to a bathroom, but sometimes don't make it in time
- you go to the toilet much more often than you used to, during the day and at night
- going to the toilet is painful or your urine has an unusual smell
- you feel the need to urinate, but you're unable to
- you notice that your urine stream is getting weaker, or you feel as if you haven't fully emptied your bladder.
What causes bladder problems?
MS can cause nerve damage in the areas of your brain and spinal cord that play a part in controlling your bladder function and the symptoms you experience will depend on which areas have been affected.
Causes of problems storing your urine (urgency and frequency)
In MS, problems storing urine happen because messages are interrupted between the bladder emptying reflex in your spinal cord and the part of your brain that has control over when you empty your bladder. This can result in the reflexes telling the bladder muscle to contract as soon as it starts filling. The bladder can become overactive and spasm or tighten unpredictably, resulting in an immediate or frequent urge to go. This is also known as overactive bladder.
I feel as though my bladder has a life of its own.
Causes of problems emptying your bladder (hesitancy and retention)
There are several possible causes for difficulties emptying your bladder. The area of your spinal cord that controls the bladder emptying reflex may be damaged by your MS. As there is no signal to urinate, your bladder becomes very full but you are unaware of how full it is, so leakage of urine may occur. Sometimes messages from the brain are confused, so that when your bladder muscle contracts to start emptying, the valve which allows urine out of the bladder closes at the same time, blocking or interrupting the bladder's attempts to empty.
I can be absolutely desperate to go to the loo and once I get there - I can't go!
For some people, these symptoms may also be combined with feelings of needing to find a toilet quickly and often. This can lead to bladder accidents in spite of earlier efforts to empty the bladder.
Not all bladder issues are caused by MS nerve damage, other causes include urinary tract infections (UTIs), enlarged prostate in men, pregnancy and childbirth, abdominal surgery, and caffeine and alcohol consumption.
What can I do if I have bladder problems?
Get to know your bladder by keeping a diary. This gives you an overview of how your bladder problems affect you over time. You could keep notes in a notebook or there are smart phone apps available to help you monitor your bladder function. It's useful to note what you have to eat and drink, any medication you take, when you go to the loo, any problems with stopping or starting, and if you have any bladder accidents. You can share this with your health professionals. It can also help you to see what difference changing something in your diet has made, for example drinking less caffeinated drinks.
Make lifestyle changes
Drink enough fluids – If you don't drink enough fluids and become deydrated, your urine becomes more concentrated which can irritate the bladder and create a good environment for infection. The general guidance is to drink at least 1.5 litres of fluid a day, or about six to eight glasses. Healthy urine is clear and straw coloured. On the other hand, drinking too much can make bladder symptoms worse, increasing the number of visits to the toilet and the urgency to urinate, so getting the right balance is important.
Avoid food and drink that irritates your bladder – Some food and drink can irritate the bladder. This includes drinks containing caffeine, alcohol, fizzy drinks, acidic fruit and juices (eg citrus fruits and tomatoes) and spicy food. Reducing or cutting these out completely can help with bladder symptoms.
Maintain a healthy weight – Maintaining a healthy weight through regular exercise and a healthy, balanced diet is important as being overweight can increase the pressure on your pelvic floor muscles and can result in stress incontinence, where urine leaks out of your bladder when it's under pressure, eg. when sneezing and coughing.
Stop smoking – Nicotine in cigarettes can irritate the bladder so reducing how often you smoke or stopping smoking completely may improve your symptoms.
Try pelvic floor exercises – Where bladder symptoms are mild, pelvic floor exercises can be helpful. The pelvic floor is a sheet of muscles that form the 'floor' to the pelvis and support the bladder and bowel. These muscles give you control when you urinate as they relax at the same time as the bladder contracts to let urine out. You can find out more about pelvic floor exercises on the NHS website.
Avoid constipation – A full bowel can obstruct the flow of urine or affect the capacity of your bladder, increasing the number of times you need to empty.
Bladder and bowels podcast
In this podcast we explain a little bit about the science behind why bladder and bowel symptoms occur in MS. We also share advice on how best to deal with these kinds of problems in the workplace.
How are bladder problems treated?
When you see your health professional they will take a full history of your symptoms and they might ask you to keep a detailed bladder diary for a short period of time. As different types of bladder problems are treated differently, health professionals need to find out the cause of your bladder problems so they can find the most appropriate treatment options for you. This will usually involve the following investigations.
- Urine test – Your health professional may ask for a sample of your urine so they can test it for any infection – this is sometimes called a 'dipstick test'. Your urine will be test for bacteria using a small, chemically treated stick (known as a dipstick) that is dipped into your urine sample. If bacteria are present it will change colour, indicating you may have a urinary tract infection (UTI).
- Bladder ultrasound – If there is no sign of a urinary tract infection, the amount of urine left in your bladder after urinating will be measured. This is carried out with a simple ultrasound scanner which is gently applied to your lower abdomen and moved over the skin. This creates an image of your bladder and shows how much fluid is left inside. If there is less than 100ml left after your bladder has been emptied, then symptoms are more likely to be due to problems storing urine. If more than 100ml remains after emptying, then the symptoms are likely to be due to problems with emptying the bladder.
Treatment approaches when you need the toilet urgently or frequently
The aim of bladder training is to increase the length of time between using the toilet. You gradually increase the time between urinating (this can be just by five minutes). It may take weeks or months to be effective but your continence advisor or MS specialist nurse can put together a timetable to support you to achieve this.
You may be offered drugs that block the messages that start bladder contractions and reduce how often you need to empty your bladder – these are called antimuscarinic drugs. They are also thought to reduce sensations of urgently needing to reach the toilet. These drugs may be taken orally as tablets or through skin patches. Some examples of antimuscarinics include oxybutynin (Ditropan, Lyrinel XL, Cystrin and Kentera), tolterodine (Detrusitol, Detrusitol XL), solifenacin (Vesicare), fesoterodine (Toviaz) and trospium (Regurin, Flotros).
If antimuscarinics haven't been effective for you or if the side effects were too difficult to tolerate, mirabegron (Betmiga) or desmopressin may be suggested. Mirabegron is taken orally as tablets and works by relaxing your bladder muscle, allowing your bladder to fill and store urine correctly. Desmopressin is a nasal spray that's used to treat day and night time frequency. It reduces the amount of urine the body produces.
Where medication hasn’t been effective an injection of botulinum toxin (Botox) into the bladder wall is an option. This acts by stopping nerve messages to the bladder muscles and can freeze their contraction, improving urinary continence. Following treatment with Botox injections, your bladder may no longer be able to empty itself so you may need to use a catheter.
Botulinum toxin is injected into your bladder wall from the inside. A fine tube, containing a very small telescope, is inserted through your urethra into your bladder to give the injections (approximately 30). This is usually carried out under local anaethetic. The benefits generally last between 6–12 months after which the procedure can be repeated.
If antimuscarinic medications have not been effective and you don't want to try botulinum toxin, percutaneous tibial nerve stimulation (PTNS) may be offered. The procedure involves having a small needed inserted near a nerve just above your ankle. A mild electric current is then passed through the needle which relaxes the nerves in your lower back that control bladder function, reducing symptoms of overactive bladder.
You will need at least 12 weekly sessions lasting 30 minutes each. Effects may not always last long after the sessions have stopped and more sessions may be needed, however it's still a useful and effective treatment for some people.
Treatment approaches when you have problems emptying your bladder or starting to urinate
Trying to relax when passing urine can help to improve hesitancy. For some people the sound of running water, for example from a tap, can relax the bladder valve to start the urine flow.
If you have problems emptying your bladder, your health professional may suggest using a catheter. A urinary catheter is a thin, hollow tube that's used to drain urine from your bladder. There are a few different types of catheter available (intermittent, indwelling and suprapubic) and they are all inserted and used in slightly different ways. Catheters may be used when needed (intermittently), usually several times a day and this is a procedure that you carry out yourself. For some people more permanent catheters are the best option. Using a catheter can sound daunting but for many people it's a positive and life-changing step that can give you better control over your bladder.
Using catheters means my bladder empties properly, and I get less of those awful water infections.
Supra pubic vibration
There is some evidence to suggest that a vibration device or buzzer, such as the Queen Square bladder stimulator, placed over the pubic area can help the muscle at the bottom of the bladder that acts like a tap or value (the urethral sphincter) to relax and improve emptying if hesitancy is a problem.
Finding a toilet when out and about
Some people who experience bladder symptoms may feel anxious about leaving the house in case they need to use a toilet. If you worry about finding a toilet when you're out and about, there are sources of help and support available.
- The National Key Scheme gives people with a disability access to many locked public toilets around the country. You can buy a key for a small charge from Disability Rights UK.
- A toilet card, sometimes called a 'just can't wait card', can discreetly let people know that you have a medical condition and need to use the toilet urgently. These can be ordered from the Bladder and Bowel Community.
- Changing Places toilets provide more space and equipment for people who cannot use standard accessible toilets. They have a large changing area, adjustable changing bench and a hoist system. There are hundreds of Changing Places toilets in the UK in major shopping centres, airports, train stations and town centres. You can search for toilets on the Changing Places website.
- The Great British Toilet Map is the UK's largest database of publicly-accessible toilets. You can search for public toilets near you using the online map.
- Some councils run Community Toilet Schemes which allow members of the public to use toilets in local businesses for free without having to make a purchase or use their services. Participating businesses usually display a sticker in the window that shows they're part of the scheme. Contact your local council to see whether a scheme is running in your area.
- There are a range of mobile phone apps that can help you locate your nearest toilet.