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Urinary incontinence

What is it like living with urinary incontinence?

Urinary incontinence can be an embarrassing and isolating condition and can negatively affect your physical and mental health. Although it is not an illness in the same way as diabetes or cancer, or life-threatening in itself, urinary incontinence can nevertheless have a huge effect on quality of life and in severe cases, people may start to run their lives around managing their urinary incontinence.

Sometimes, people stop certain hobbies, limit how far they travel, become physically distant from their partner, or become discouraged about starting new relationships. Previously confident people may become very self-conscious.

Such changes to your life can really take a toll on your happiness and affect your social life, work life, and sex life in a negative way. Urinary incontinence can cause physical and emotional discomfort and can lead to low self-esteem.

Urinary incontinence can also make you feel powerless. Having unwanted urine leakage in a public place can be upsetting and embarrassing. This could lead to fear of leaving the house, can cause social withdrawal, a sense of isolation and prevent you from enjoying your life to the full. It may also affect your loved ones if they witness your unhappiness or if you stop doing things together that you previously used to enjoy.

Understanding a bit more about urinary incontinence, and what can improve symptoms or make them worse, may help you feel more positive and in control. For instance, you may wish to make some dietary or lifestyle changes to improve your urinary incontinence. Understanding that certain foods and drinks, such as acidic and spicy foods, fruit juice, fizzy drinks, alcohol, and caffeine can make urinary incontinence symptoms worse, can enable you to make informed choices when it comes to food and drink and avoid any triggers.

There are many reasons why people develop urinary incontinence. Some causes can be treated or even cured, but sometimes it is only possible to manage urinary incontinence with lifestyle changes and by using products that help to contain any urinary leakage and which keep you feeling dry and comfortable.

It’s helpful to plan ahead and focus on solutions where possible rather than focussing on the problems. Before you go out, think about the day ahead of you. A little foresight can make living with urinary incontinence much less stressful. For instance, if the stair-climbing machine at the gym makes you leak, try the bicycle instead. If you know you often shop longer than planned take panty liners or pads with you. Know where the bathrooms are when you are out and about and try to go as often as possible. That way you will enjoy your time at the gym or the shops much more.

Try not to feel discouraged if your urinary incontinence can’t be cured completely as there are many ways you can improve things for yourself. There are also products available to help improve your quality of life. Your doctor can help you from a medical point of view and can also refer you to further sources of help, equipment, and information.

A large part of having urinary incontinence is the effect it can have on your personal life and how you feel in yourself. Social attitudes often mean that it is a considered as a somewhat taboo subject, with stigma associated with it, which can make it difficult to talk about; even with your partner or the people closest to you. You do not need to feel alone or suffer in private. Throughout many European countries, there are organisations, support groups and charities providing help and information to people living with urinary incontinence. There are telephone helplines and online forums for example, where people can ask questions or chat with others who understand or are in a similar situation.

Specialist help, in the form of counselling or therapy, is also possible and it can be helpful to talk through difficult feelings and life changes with an expert.

Physical and emotional effects

Sex and relationships
It can be difficult to feel attractive or confident when you do not always feel in control of your body. Low self-esteem, depression or anxiety related to urinary incontinence can have a negative effect on your sex life and make you feel distant from your partner. Fear of having urine leakage during sex can lead to avoiding being intimate.

It is important to talk to your partner about how you feel so that your urinary incontinence doesn’t cause distance in your relationship, and your partner can support you. The love and encouragement of your partner may help you keep your sense of self-esteem, if you are reassured that your partner still appreciates you for who you are and sees beyond your urinary incontinence.

It can be difficult for your partner if you have previously enjoyed a close relationship, but you have become distant. It may help you both if you try your best to talk to your partner about any difficulties you are having because of your urinary incontinence, and trust them to be supportive.

Urinary incontinence can trigger a range of emotions, including helplessness, frustration, sadness, shame, anger and bewilderment. Often, people still experience emotions that are difficult to handle even if they have talked to loved ones about their condition. This may be because people close to us who do not suffer with the same problems, aren’t quite able to understand what we are going through, or it might be that talking to people you know about such personal matters causes you stress, rather than relieves it.

There are some matters that people would rather discuss with a professional who isn’t part of their personal life. Talking to a counsellor or therapist for example, can provide an outlet for uncomfortable emotions and such experts can suggest new ways of looking at problems, or help you brainstorm about ways of coping with your difficulties and work through any difficult emotions that you feel.

You may prefer a one-to-one meeting with a professional, where you see a therapist at their office, or you may wish to see if there are any groups that you can join, such as online chat groups or forums, that are available through urinary incontinence charities or organisations.

You may find having connections to others with similar issues to be helpful in terms of having people to reach out to that understand your situation, or who might be able to offer helpful suggestions or advice from their own experience of the condition. Quite often, groups can provide an understanding environment to air your feelings or exchange helpful tips, such as things you can do, or avoid doing, to help your urinary incontinence, or useful products to buy.

There are also various charities and helplines that provide useful information or someone to talk to, if you wish.

If you think speaking to a professional might be helpful, you can ask your doctor for details of local counselling services that are available or if they can refer you. Alternatively, you may wish to consider private counselling or seeing what telephone or online support is available.

Practical issues

How can I deal with incontinence at work?
It can be stressful going to work when you have urinary incontinence, especially if you worry a lot about it while you are there. Having a plan of action and thinking about coping strategies in advance can help lessen the inconvenience and worry of urinary incontinence, and help you feel more in control of the situation. There are many things you can do, and products you can use, to make urinary incontinence less of a burden to live with in your life in general, as well as at work.

You may wish to consider:

  • Keeping a supply of good-quality pads designed just for incontinence in your desk or locker, at work.
  • Buying odour preventers. Ask your pharmacist or doctor about these.
  • Wearing your favourite perfume or aftershave, as well as your regular deodorant/anti-perspirant. These will not prevent the odour but may make you feel more confident.
  • Avoiding drinking too much liquid during working hours.
  • Avoiding having caffeinated or fizzy drinks at work.
  • If you are in a meeting, taking sips from a glass of water rather than drinking full cups of coffee or tea.
  • Trying to use the toilet before you feel your bladder is full. Standing up with a full bladder may cause urine leakage.
  • Trying to use the toilet regularly.
  • Wearing dark coloured clothes on your lower half. Lighter-coloured skirts or trousers may show stains more easily.
  • Keeping an extra set of underwear or spare clothes at work.
  • If recommended by your doctor or physical therapist, trying to do your pelvic floor exercises during work hours to regularly strengthening your bladder control.

How can I deal with incontinence while travelling?
Travelling, especially long distances, or staying away from home can be difficult when you have urinary incontinence. It can also cause worry. For example, you may find it stressful being in a situation where you don’t know where the nearest toilets are, not being able to access a toilet or being away from a toilet for a lengthy period of time. To make travel more comfortable you can:

  • Try to pre-book a seat near a toilet on trains and aeroplanes.
  • Carry different incontinence pads for day and night use, and spare underwear in your hand luggage.
  • When travelling by car, plan toilet breaks throughout the trip e.g., decide which service stations or towns you will stop at to use toilet facilities.
  • Try sitting on cushions to prevent engine vibrations triggering incontinence.
  • Avoid drinking too much liquid, especially coffee, tea, alcohol, fruit juice or fizzy drinks, just before and during travel.
  • Wear loose clothes for comfort.
  • Wear protective incontinence pads or incontinence underwear/briefs for peace of mind.
  • Try to use toilet facilities before your bladder feels full.
  • Take incontinence bed pads, designed to protect the mattress, with you so you do not have to worry about urine leakage in a hotel bed or while staying away from home.

How will a catheter affect my daily life?
Your doctor may recommend that you have a catheter inserted to manage your urinary incontinence. You may be taught how to insert an intermittent (temporary) catheter to empty your bladder every couple of hours, or you may need an indwelling catheter, which would be inserted by a doctor or nurse and would remain in place for longer.

Although having a catheter can take a little getting used to, it is possible to do many activities and actions with a catheter in place. Your doctor will advise you about working, exercising (such as swimming), and travelling with a catheter.

Having a catheter does not need to put a halt on your sex life either. Men and women can have sex with a urinary catheter. For men, the tubing can be bent backwards next to the penis, and a condom could be applied to keep it in place. For women, the tubing can be taped to the thigh, out of the way. You would need to make sure the tube is not folded in half at any time because this would prevent the bladder from being drained.

Alternatively, it may be possible for you to be taught to remove and replace your catheter so that you can have sex without your catheter in place.

Living with a catheter can feel a bit strange at first and you may find it difficult to get used to the idea of wearing one, especially if you require an indwelling one. There are several charities and organisations across many countries, that provide helpful information, advice and support to people living with urinary incontinence and who use catheters.