How to talk about incontinence

It’s estimated that between 3 and 6 million people in the UK have some degree of urinary .1 Despite so many people experiencing it, many sufferers never tell anyone what they’re going through.

But why do people still struggle to talk about incontinence? To find out, we spoke to Dr John S. Young, Associate Professor in Urology, and Luce Brett, writer and advocate due to her own experiences of incontinence after the birth of her first child.

Dr John suggests that there are several reasons why people are unwilling to seek support for their incontinence: “Patients are embarrassed. Others believe that incontinence is an inevitable consequence of ageing; like grey hair. But delaying to seek help can narrow what treatment options are available and even limit their effectiveness.”

Similarly, Luce experienced the difficulty of talking seriously about her condition, but found that eventually finding a way to talk about it was essential in her getting the help she needed:

“Incontinence is a taboo but it also hides away in jokes and anecdotes about wetting yourself if you laugh or drink or dance too much. So in one sense I found it easy to joke or roll my eyes at the thought of going on a long-distance run or walk with my damaged pelvic floor - especially with other women in a similar position and life stage. But to talk about it properly? That was far harder. I started off talking on forums online, which was useful, and then to my doctor.”

How to start the conversation about incontinence

If you decide that you’re ready to have a conversation, here are a few things to consider:

• Figure out who you want to tell – it might be a friend, family member, partner, co-worker or health professional. It should be someone you trust and feel will be able to support you.

• Pick a time when you won’t be rushing to finish the conversation and you won’t be interrupted so you can give the conversation the time and attention it needs.

• Pick a location where you feel comfortable enough to talk about your issue – that might mean somewhere you won’t be overheard, like at home or during a walk in the park.

• Decide what you need from your friend or family member – that might just be someone to confide in, or you may want to ask for some support, like accompanying you to a GP appointment.

• Have the conversation – you may want to start it by saying “can I tell you about an issue I’ve been dealing with” or “I’ve been struggling recently with incontinence”. Talk about what you’ve been experiencing, and don’t be afraid to ask for support if you need it.

Of course, you may decide that you would prefer to tell someone over the phone, by text, over email or even write a letter. It doesn’t matter as long as you feel comfortable and it allows you to get the message across. You may also want to go straight to a medical professional, or an organisation like Bladder Health UK.

Luce knows that there is no need to be ashamed of her medical issue as health professionals understand the condition, while many of her friends and relatives may even know what she was going through, but that doesn’t make having the conversation any easier: “you can still feel very upset and embarrassed and worried that people will think you are disgusting, being rude, talking out of turn, or making a fuss.”

“It isn't making a fuss to talk about or find help – both pads and other aids to help keep you dry, and also advise and support (ranging from physio exercises to surgery for some people surgery) that can cure you.”

How to support someone with incontinence

If someone you know tells you that they have , you may be unsure how to react in the best way to support your friend or family member. Luce, author of ‘PMSL: Or How I Literally Pissed Myself Laughing and Survived the Last Taboo to Tell the Tale’ which touches on these issues, recommends the following:

• Follow their lead.

• Be kind and open.

• Don't judge them.

• Help them find advice online, or with their GP or practice nurse.

• Be sensible and kind about having to buy products that are intimate – like continence pads or pants.

• Be aware of their mood – incontinence can result in anxiety and depression.

• Understand it might take someone a while to open up.

If you’re caring for someone with incontinence, you may want to check out TENA Family Carer for more help and advice.

Talking to your doctor about incontinence

On paper, making an appointment with your doctor to talk about is nothing to be nervous about, but despite this it’s estimated that only 26% of people suffering from incontinence actually seek help.2 This could be due to embarrassment, or perhaps wrongly thinking that there’s nothing that can be done to help the condition.

From the onset of symptoms, women may take up to 10 years before seeking help.3 Dr John explains what happens when you visit the doctor to talk about incontinence and why there’s no need to put it off: “incontinence can occur for a number of reasons. The role of the doctor is to work out what might be the cause of your symptoms and help provide relief.”

“A doctor will begin by asking a series of questions to better to understand the basis of the symptoms. They’ll ask about the nature of the symptoms; for example, is incontinence brought about by laughing or certain physical activities? Is it accompanied by a strong desire to void that cannot be ignored?”

“They’ll also ask about other symptoms – including urinary symptoms (do you wake during the night to pass urine?), whether there’s ever any blood in the urine and whether there are any other symptoms, such as pain. They might choose to do a urine dipstick test or send the urine away for microbiology testing.”

“The doctor may ask you to record a bladder diary which documents when and what volume of liquids are consumed; when and what volume of urine is passed; and whether this is accompanied with incontinence or any other urinary symptom. Once the doctor is confident that they know the cause of your incontinence, they’ll explain what options are available to you. They’ll often then suggest a follow-up to review your symptoms.”

The benefits of talking about incontinence

The first and foremost benefit of talking about is that being vocal allows you to receive the support you need, as Dr John explains: “whatever the basis of the incontinence, early intervention is likely to be more effective than intervention at a later stage. Some diseases include incontinence as a symptom, so seeing your doctor to get a diagnosis is important for your overall health.”

“We know that incontinence can impact mental wellbeing: resulting in depression and impacting on many aspects of sufferers’ lives. Talking about and seeking help for incontinence is important to minimise the impact on all aspects of our lives.”

The more we have conversations about incontinence, the closer we are to ending the stigma around experiencing bladder issues. Luce discusses why it’s important that we talk more about incontinence both personally, but also in society in general: “if incontinence is less hidden then more help would be available, fewer people would suffer on their own and think either they are the only person wetting themselves or soiling their clothes – and more people would get help. We'd also perhaps be able to move on and treat this very common condition with more common sense and kindness.”

“The stigma about incontinence is around the world over – and it needs to stop. We shouldn't shame people or live in a conspiratorial hush which makes people feel desperate and alone, or believe incorrectly that being a bit leaky is a normal part of being older. We should be kinder. After all, we all have bodies and know they can break a bit.”

We also talked to England Rugby star Lewis Moody about urine leakage and how we can End Bladder Shame. Talking about it becomes easier the more informed you are about the issues surrounding incontinence. Read more about the link between mental health and incontinence, what exactly is incontinence or about how pelvic floor exercises can help, and continue the conversation.

1(Source: Irwin, D., Milsom, I. et al. Impact of symptoms on employment, social interactions and emotional wellbeing in six European countries. British Journal of Urology International: 2005; 97, 96-100)