The short answer
- It is the signals, not the organsMS damages the nerve pathways in the brain and spinal cord that control the bladder and bowel, which is why the pattern changes and why treatment works.
- There is a free NHS service for exactly thisAsk the MS nurse or GP to refer you to the continence service, or self-refer where your area allows. NICE expects this to be checked at the yearly MS review too.
- Constipation makes the bladder worseA full bowel presses on the bladder and can obstruct the flow of urine, so sorting the bowel out often improves both problems at once.
- A carer can hold the routine, not the clinical partsGetting somebody to the toilet in time, pads, washing, the bowel routine and the chart are ordinary personal care. Putting in or removing a catheter is nursing work.
This page describes England, and it is general information rather than medical advice. Any change to medicines, catheters or a bowel routine belongs with the MS nurse, the continence service or the GP.
Why it happens
MS damages the signals to the bladder and bowel, not the organs
Emptying a bladder is a conversation between the bladder, the spinal cord and the part of the brain that decides when it is convenient. MS leaves patches of damage along the pathways that carry it, so parts of the message arrive late, arrive muddled, or do not arrive.
The words you will hear at the appointment
- Neurogenic bladder
- Bladder trouble caused by damage to the nerves that control it, rather than by anything wrong with the bladder itself.
- Urgency, frequency and nocturia
- Needing the toilet with very little warning, needing it more often, and being woken by it at night.
- Incomplete emptying
- A stream slow to start or stopping and starting, and the feeling of still being full. Retention is the extreme version.
- Residual volume
- How much urine is left in the bladder straight after passing water, measured with a small ultrasound scanner held against the tummy. It decides what happens next.
- Intermittent self-catheterisation
- Passing a thin, single-use tube to drain the bladder several times a day, removing it each time. A continence nurse teaches it.
- Continence service
- The free NHS bladder and bowel service for your area. In many areas you can contact it without going through the GP.
Because the damage is to the pathway rather than the organ, the symptoms move around. A relapse can change the pattern in a fortnight and change it back, and heat, tiredness or an infection can make an existing pattern worse for days without anything new having happened. That is the same reason MS fatigue runs the shape of the day, and the MS care pillar sets out how the day flexes around it.
Bladder & Bowel UK describes problems like these as very common and rarely talked about, and worry about being far from a toilet is one of the reasons people stop going out. There is a free NHS service whose whole job is this, staffed by nurses who deal with it every day.
The four patterns
The four patterns, and how the bowel and bladder feed each other
Most of what MS does here falls into four patterns, and somebody can have more than one at a time. Each is set out with what the nerves are doing, what it looks like in an ordinary day, what the NHS can offer, and which part a carer can take on.
Urgency and frequency
Sometimes called an overactive bladder
- What the nerve signals are doing
- The bladder tells the spinal cord it is filling, but the message from the brain that holds it until the person is ready does not get through. The bladder muscle contracts while it is still filling.
- What it looks like in a day
- Very little warning before needing the toilet, going more often through the day, and waking in the night to go.
- What the NHS can offer
- Timed toileting or bladder retraining after an assessment, pelvic floor muscle training where the muscles can still be squeezed voluntarily, and medicines that calm the bladder muscle.
- What a carer can do
- Builds the day around toilet stops, keeps the route to the bathroom clear, and gets there in time without making an occasion of it.
Not emptying properly
Hesitancy, a stopping stream, and retention
- What the nerve signals are doing
- The bladder muscle and the ring of muscle at the outlet stop working in step, so the outlet tightens at the moment the bladder squeezes. The bladder muscle can also stop before the bladder is empty.
- What it looks like in a day
- Waiting for it to start, a slow or interrupted stream, and needing to go again soon after going. Urine left behind is what makes infections more likely.
- What the NHS can offer
- A bladder scan to measure what is left behind after passing urine, and intermittent self-catheterisation taught by a continence nurse if that residual volume is high.
- What a carer can do
- Keeps the catheter kit and the drinks within reach, writes down the pattern for the nurse, and rings the nurse if nothing is passing at all.
Constipation
The one most likely to be left alone
- What the nerve signals are doing
- The messages that move waste along the bowel, and the ones that report the bowel is full, are slowed or muddled. Moving about less slows it further, and some bladder and pain medicines make it worse again.
- What it looks like in a day
- Going less often than usual, straining, and a full, uncomfortable feeling that does not clear. It also makes every bladder symptom above worse.
- What the NHS can offer
- A bowel routine set by the continence service or the MS nurse, fibre and fluids, and laxatives or suppositories where they are prescribed.
- What a carer can do
- Keeps the routine at the same time each day, keeps the food and drinks going, gives the person time and privacy, and records what happened.
Bowel urgency and accidents
Faecal incontinence
- What the nerve signals are doing
- The muscle that holds the bowel closed is weakened by the same nerve damage, or the warning that something is coming arrives too late to be any use.
- What it looks like in a day
- Little notice, sometimes none, and worry about being far from a toilet. Constipation can sit behind this too, with looser stool passing around a blockage.
- What the NHS can offer
- Assessment by a continence service, which may include emptying the bowel at a planned time each day so there is less there to leak, and advice on products.
- What a carer can do
- Knows the plan, has clean clothes and washing things ready before they are needed, and treats it as part of the day rather than an event.
Why the bowel is usually dealt with first
A full bowel presses on the bladder. It can obstruct the flow of urine and reduce how much the bladder will hold, so somebody who is constipated needs the toilet more often and empties less well when they get there. That is why a continence service will often sort out the constipation before changing anything about the bladder, and why a carer keeping a bowel routine steady can improve two problems at once.
Patterns drawn from NICE clinical guideline CG148 on urinary incontinence in neurological disease, NICE guideline NG220 on multiple sclerosis in adults, the NHS pages on urinary catheters, incontinence products and constipation, and the MS Trust entries on bladder and bowel problems. MS Trust, bladder problems; NHS, causes of urinary incontinence, which lists constipation among the obstructions behind overflow incontinence.
Urine left behind in the bladder makes infections more likely, and an infection can make MS symptoms worse for days without being a relapse. NICE tells clinicians that unexplained changes in neurological symptoms, such as confusion or worsening spasticity, can be caused by urinary tract disease. If somebody with MS seems suddenly worse and nobody can say why, a urine sample is a reasonable early question.
The loop between the bowel and the bladder above matters just as much: a family told about the bladder and not the bowel is working on the harder half. Managing incontinence covers the same ground for an older person without MS.
Raising it
How to raise it, and what happens at a continence assessment
Nobody has to arrive with the right words. Saying that going to the toilet has become difficult, or that there have been accidents, is enough to start this off.
- 1
Tell the MS nurse or the GP
The first callThe MS nurse is usually quickest, because they know the history and can tell a new symptom from a relapse. Without one, the GP does the same job. Say how long it has been going on and whether anything is being passed at all. - 2
Ask for the continence service
Free, sometimes self-referralEvery area has an NHS bladder and bowel service. Ask the GP to refer, or contact it directly where self-referral is allowed. It measures, teaches and reviews everything further down this page. - 3
Keep a chart before the appointment
Three daysNICE asks people, and their family members and carers, to record fluids taken in, how often urine is passed and how much, for at least three days. Doing it beforehand saves several weeks, and a carer can keep it for the visits they are there for. - 4
The assessment itself
Usually one appointmentA history, an examination, a urine dipstick test for infection, and a bladder scan to measure what is left behind after passing water. NICE suggests measuring that residual volume on more than one occasion, because emptying varies through the day. - 5
A plan, and a review of it
OngoingWhat follows depends on the scan and the chart. NICE says anybody using catheters, appliances or pads should get training from staff who know the products, and have those products reviewed at least every two years.
What helps
What a continence service can offer, from a scan to a catheter
These are set out so that none of them is a surprise when a nurse mentions it. Which one fits depends on the scan, the chart and what somebody can manage with their own hands, so treat it as a guide to the conversation.
| What it is for | What it involves | |
|---|---|---|
| A bladder scan and residual volume | Finding out whether the bladder is emptying, and settling what happens next | A small ultrasound scanner held against the tummy straight after passing water. It takes a minute and hurts nothing. A high residual volume changes the plan, because treating urgency without checking emptying can make retention worse. Timed toileting and bladder retraining are the usual first answer to urgency once emptying has been checked. |
| Pelvic floor muscle training | Leaking, where the muscles can still be squeezed voluntarily | Exercises taught after a specialist pelvic floor assessment, sometimes with biofeedback or electrical stimulation. NICE names MS as a condition where this is worth considering. |
| Medicines for an overactive bladder | Calming a bladder muscle that contracts too early | Antimuscarinic tablets are the usual first step. They can reduce bladder emptying and worsen constipation, so NICE asks for residual volume to be monitored after starting them. |
| Intermittent self-catheterisation | A bladder that will not empty on its own | A thin single-use tube passed several times a day to drain the bladder, then removed. A continence nurse teaches it. It needs reasonable hand function, which is where MS in the hands comes into the decision. |
| An indwelling or suprapubic catheter | When intermittent catheterisation is not possible | A catheter left in place, draining into a leg bag or a valve. An indwelling one goes in through the urethra and is changed at least every three months; a suprapubic one goes through a small opening in the tummy and is changed every four to twelve weeks. NICE asks clinicians to explain that these carry a higher risk of stones and kidney problems than intermittent catheterisation. |
| A bowel routine | Constipation, and the accidents that follow it | Emptying the bowel at the same time each day, with fibre, fluids and a footstool to raise the knees above the hips. The NHS advice is a regular time and place, plenty of time, and not putting off the urge. Laxatives or suppositories where prescribed. |
A bladder scan and residual volume
- What it is for
- Finding out whether the bladder is emptying, and settling what happens next
- What it involves
- A small ultrasound scanner held against the tummy straight after passing water. It takes a minute and hurts nothing. A high residual volume changes the plan, because treating urgency without checking emptying can make retention worse. Timed toileting and bladder retraining are the usual first answer to urgency once emptying has been checked.
Pelvic floor muscle training
- What it is for
- Leaking, where the muscles can still be squeezed voluntarily
- What it involves
- Exercises taught after a specialist pelvic floor assessment, sometimes with biofeedback or electrical stimulation. NICE names MS as a condition where this is worth considering.
Medicines for an overactive bladder
- What it is for
- Calming a bladder muscle that contracts too early
- What it involves
- Antimuscarinic tablets are the usual first step. They can reduce bladder emptying and worsen constipation, so NICE asks for residual volume to be monitored after starting them.
Intermittent self-catheterisation
- What it is for
- A bladder that will not empty on its own
- What it involves
- A thin single-use tube passed several times a day to drain the bladder, then removed. A continence nurse teaches it. It needs reasonable hand function, which is where MS in the hands comes into the decision.
An indwelling or suprapubic catheter
- What it is for
- When intermittent catheterisation is not possible
- What it involves
- A catheter left in place, draining into a leg bag or a valve. An indwelling one goes in through the urethra and is changed at least every three months; a suprapubic one goes through a small opening in the tummy and is changed every four to twelve weeks. NICE asks clinicians to explain that these carry a higher risk of stones and kidney problems than intermittent catheterisation.
A bowel routine
- What it is for
- Constipation, and the accidents that follow it
- What it involves
- Emptying the bowel at the same time each day, with fibre, fluids and a footstool to raise the knees above the hips. The NHS advice is a regular time and place, plenty of time, and not putting off the urge. Laxatives or suppositories where prescribed.
Drawn from NICE clinical guideline CG148 on urinary incontinence in neurological disease, last updated October 2023, and the NHS guidance on urinary catheters and constipation. Which of these fits one person is for the continence service and the MS nurse to decide.
Pads, pull-up pants, bed protection, catheters and skin care products may be available through the NHS. The NHS says this depends on your local integrated care board, and that you may need to be assessed by a healthcare professional to qualify, so the assessment is free everywhere while the product supply varies by area. Asking the continence service is the only way to find out what yours does. Bladder & Bowel UK is a charity with a nurse-staffed helpline giving independent advice on products, and the MS Trust explains the bladder and bowel side of MS plainly.
Carer or nurse
What a carer can do, and what has to stay with a nurse
Families most often get this wrong either by assuming a carer can do less than they can, or by asking one to do something clinical because the district nurse is hard to reach.
Ordinary personal care a carer can agree to
- Helping somebody to the toilet in time, staying near enough to be useful without standing over them
- Pads, washing, drying and skin care, with clean clothes ready before they are needed
- Keeping the bowel routine at the same time each day, with the food, drinks and privacy it needs
- Emptying a catheter bag, swapping a leg bag for a night bag, and washing the skin where the catheter enters the body
- Keeping the chart the continence service asked for, and counting the stock in the cupboard
- Ringing the MS nurse, district nurse or GP when something changes
Clinical work, for a nurse or a delegated task
- Inserting, removing or unblocking a catheter, which is nursing work
- Suppositories, enemas or emptying the bowel by hand, unless formally delegated as a healthcare task
- Deciding whether a colour, a smell or a residual volume is a problem, rather than reporting it
- Changing a dose, holding a tablet back, or starting anything the plan does not mention
- Taking a task on because the district nurse is hard to reach
None of the clinical tasks is closed off for good. A regulated healthcare professional can hand a named clinical task to a named carer, for one person, after assessing them, teaching them on that person's own equipment and watching them do it. Who can train a carer to do catheter care sets out who may delegate, what the sign-off should look like and who is answerable afterwards, and catheter and stoma care at home covers the daily routine, including which parts are plain personal care.
Day to day
Privacy, the same carer, and still going out
Once the clinical plan is settled, what is left is a set of small practical arrangements, and these are the ones that decide whether somebody keeps going out of the house.
Privacy is part of the task
Agree it at the first visit
The same carer wherever possible
Agree it before you book
Drinks earlier in the day, not fewer drinks
A common mistake
Planning a trip out around toilets
What keeps somebody going out
If you want help with a routine from the same person each time, search for carers near you and compare their rates and read what each one says they have done before. Hourly visits on PrimeCarers run from £18 to £25 an hour with our fee included, against £28 to £35 for an agency visit, and our pricing sets out what is in that figure. If nights and transfers now need somebody there all the time, progressive MS and round-the-clock care covers what changes, cover at short notice during a relapse covers the harder fortnights, and funding care sets out what may pay towards it.
Questions
Questions families ask about bladder and bowel care with MS
No. MS damages the nerve signals that control the bladder rather than the bladder itself, and much of what follows responds to treatment. NICE has a guideline devoted to urinary incontinence in neurological disease, and expects bladder and bowel function to be assessed at the comprehensive MS review everybody with MS should have at least once a year. If it has never come up at that review, raise it.
Part of it. Emptying a bag, swapping a leg bag for a night bag, washing the skin where the catheter enters the body and watching what drains are ordinary personal care. Putting a catheter in, taking it out or unblocking one is nursing work. Between the two sits a small group of tasks a nurse can formally hand to a named carer after training them on that person’s own equipment, which is set out on who can train a carer to do catheter care.
It depends where you live. The NHS says you may be able to get incontinence products on the NHS depending on your local integrated care board, and that you may need to be assessed by a healthcare professional to qualify. The continence assessment itself is free everywhere. NICE adds that products should be reviewed at least every two years.
A full bowel presses on the bladder. It can obstruct the flow of urine and reduce how much the bladder holds, so somebody who is constipated needs the toilet more often and empties less well when they get there. The NHS lists constipation among the obstructions behind overflow incontinence, which is why a continence service often deals with the bowel first.
It can make existing symptoms worse for a few days without being a relapse. NICE tells clinicians that unexplained changes in neurological symptoms, such as confusion or worsening spasticity, can be caused by urinary tract disease, and its MS guideline names infections among the things that worsen spasticity. A urine sample is a reasonable early question for the GP or MS nurse.
Hourly visits on PrimeCarers run from £18 to £25 an hour with our fee included, typically around £20. Agencies charge £28 to £35 an hour for the same visit. Visits are booked in half hours with a one-hour minimum, which matters because a bowel routine cannot be done to a fifteen-minute call. Funding care covers what the council, the NHS and benefits may pay towards it.