David’s story

Negative experiences in school toilets left David unable to use the loo – a problem that continued long into adulthood.

As told to ERIC by David, Trustee at UKPT.

In the primary school toilets, when I was 9, some kids pushed me against the wall as I was weeing in the urinal. To them, it was a joke.

I took it badly and stopped using the urinal. I went into a cubicle to sit down. But there were no locks so kids would kick open the door and laugh – again, not singling me out, just as a general thing which took place in school toilets.

I stopped using the toilets at school, holding on until I got home.

I thought I was the only person in the world

In secondary school, it became a lot worse. My circle of friends virtually disappeared, because I needed to be alone to sneak into the school building at lunchtime, which was against the rules, to try and use the toilet. Even the slightest noise would stop that from happening.

It was really difficult. I was very distressed. I didn’t tell anybody – not even my parents. I thought I was the only person in the world who suffered from this.

It stopped me having friends. I didn’t have sleepovers or school trips away, because I couldn’t control when I could use a toilet.

It took over my life

In adulthood, I tried to manage it by purposely dehydrating and timing all of my toilet breaks before I went anywhere. It took over my life. My life revolved around when I would go to the toilet and urinate.

Eventually, after having to turn down a free holiday abroad, I went to the GP and broke down – the first person I ever told. I ended up seeing a psychiatrist in a group setting for 6 years and it made no difference to my condition whatsoever.

Shy Bladder Syndrome

Years went by. Then one day, I was watching Richard and Judy on TV and a man was talking about paruresis or ‘Shy Bladder Syndrome’. Paruresis is described as ‘an inability to urinate in the presence, real or perceived, of others’ – such as not being able to wee in a public toilet.

I was amazed. I’d thought I was the only person who had it.

I met other sufferers. We formed what is now the UK Paruresis Trust, where I’m a Trustee.

I went on a workshop to learn techniques to recover from paruresis, to help you have a normal life to manage it. It had been 45 years since I’d been able to urinate in a urinal. Using the processes, I managed it! I was amazed.

I continued practicing – I still do – and now I can mostly use the toilet when I need to.

I think some schools need to be more flexible with children. I understand a lot of kids will mess about. But it’s sometimes hard for young people to explain why they need to go to the toilet during class and why they haven’t been during break. In my case, no one knew the problems I was having.

For more information on paruresis, visit ukpt.org.uk

UKPT say that there may be no guaranteed 100% cure, but there are coping strategies on their website that have proved to be very successful in helping to overcome shy bladder syndrome, and greatly improve an individual sufferer’s quality of life. They also have a forum which enables sufferers to contact other people with paruresis.

Toilet anxiety

Many of us may remember a negative toileting experience in childhood or teenage years, whether that’s an unpleasant school toilet, a bad smell, or pain or discomfort caused by issues like constipation.

Finding toilets unpleasant and sometimes worrying is particularly common in children and can impact on their bowel and bladder control, function and, subsequently, health.

Children might remember their bad experience each time they go to the loo, leading to an association of anxiety with going to the toilet. It’s important we recognise toilet anxiety or toilet phobia in children – and the effect that it can have on them. When we recognise this, children can be supported to overcome their fear.

If toilet anxiety is not addressed, it could lead to chronic bowel and bladder issues. Children may start to hold in their wee or poo to avoid using the toilet – known as ‘withholding’ – which can lead to problems like constipation, urinary tract infections (UTIs) or daytime wetting accidents. This can result in sore poos and smelly, stingy wees, causing even more anxiety as the fear increases – and so it becomes a vicious circle.

Anxiety is the emotional response to an unfamiliar or alarming situation and is linked with physical changes in the body. Physical effects on the body include nausea and stomach ache, rapid shallow pulse/breathing, headaches, faints and wee and poo accidents.

Anxiety also has emotional effects for children – which might include panic attacks, tantrums and meltdowns, withdrawal, freezing, sleep problems and nightmares, clinging, exhaustion – which can affect children’s confidence and behaviour at this vital time of development.

If toilet anxiety isn’t addressed, it can cause chronic problems even into adulthood.

Shy Bladder Syndrome

One potential consequence of toilet anxiety is paruresis or ‘shy bladder syndrome’ which is usually diagnosed in adulthood.

Paruresis is recognised as a social anxiety disorder rather than a social phobia. It affects both men and women, of all ages and backgrounds. People who experience paruresis tend to avoid situations where they may find it difficult to wee, so it can really affect a person’s life and wellbeing.

What causes toilet anxiety?

As well as uncomfortable experiences at school, there are all sorts of other possible causes of toilet anxiety.

For some, it’s the sensation of wee or poo coming out. For others, the splashback from the toilet, or fear of falling into the toilet.

The sensory experience of the bathroom environment might provoke anxiety.

For a longer list of possible causes, visit ERIC’s pages Toilet anxiety and toilet phobia in children and Sensory needs and toileting.

Tips to help toilet anxiety in children

Accept and recognise the child’s anxiety and analyse the factors contributing to this.

Check bowel and bladder function. Many children are constipated too and that will need treatment before progress can be made. See our advice for children with constipation for more information.

Build confidence with other activities and skills e.g. washing hands, putting on socks, being helpful

Break up the task into small, easy steps that can be gradually built on

Use predictable routines

Distraction

Try to make toileting fun

Talk to the child about anxiety

See Toilet anxiety and toilet phobia in children for different things to try like music, videos, books or rewards.