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In the UK, there are an estimated 14 million people living with a bladder problem according to NHS England, which is around 20% of the population. If you’re out with a group of 9 friends, 2 of you could be living with incontinence. For a topic that’s difficult to raise over a meal or glass of wine, this represents a huge proportion of our communities who may be suffering in silence. This article aims to open up conversations and help us connect with others.
Do we still have a ‘Wee and Poo Taboo’ culture?
People are much more confident to speak to friends and family about living with a stoma or catheter for example, but urinary incontinence? Faecal incontinence?? The poo-taboo culture is easing, but it’s a slow shift. It seems we’re still hiding our continence issues.
We were discussing this as a team, and one of us shared that their partner would never buy incontinence pads from the supermarket – if they needed them, they’d buy them online to avoid the embarrassment. Another admitted leaking while running for a train (she made it, but had to dash to the nearest toilet to clean up. We could all relate). Even at Bladder & Bowel Community HQ there can be moments when we feel embarrassed by our bodies, but we manage our work and home life as well as possible.
We’re asking:
Luckily nowadays we have so many choices when it comes to continence wear. There are sustainable reusable and disposable options such as products from Grace and Green, or traditional disposable pads from the supermarket – with a growing proportion of people buying continence wear online. Our ability to capture lost urine is so much more efficient yet we still feel the emotional toll of dealing with our bodies’ ‘waste products’. Living with incontinence doesn’t mean we have to give up work, or stop the activities that bring us joy.
We’re not disgusting – we’re human
Our aversion to all things wee and poo is suggested to have come from self-preservation. If food smells bad, it might make us ill. If water smells rotten, it may be unsafe to drink. These kinds of responses mean we’re protected from potentially ingesting bacteria, and succumbing to disease or infection.
We all know the importance of washing our hands after going to the toilet (and the look we all give to those who don’t, a look of disgust!). This is a learned response to keep us safe and avoid germs. But incontinence products are sanitary wear – they help us to manage hygiene which is a good thing. So why the aversion? When it comes to living with continence issues we need to reprogram that part of our brain that triggers a reaction of disgust.
We’re not disgusting, we’re just human – and we’re dealing with it.
We asked our Community for their experiences in seeking help with incontinence, and the responses were varied. One person told us they’d had multiple visits to their GP before being referred to urology, but were given no timeframe for an appointment. Another person was referred to the local continence service and they were excellent from the start – understanding, supportive, helpful, which helped them get diagnosed with nerve damage.
Luckily nowadays we have so many choices when it comes to continence wear. There are sustainable options like Grace & Green, which offers products made from organic cotton and bamboo with a focus on dignity, comfort and reducing unnecessary plastic, alongside traditional disposable products available in supermarkets and online.
Our ability to manage leaks discreetly and effectively has never been better, yet many people still carry the emotional burden and stigma associated with dealing with their bodies’ natural functions.
One patient told us:
“I went to the doctor and she prescribed me some over active bladder medication ( just while I was waiting to see a specialist) and referred me to urology – I waited about 10 weeks to be seen at the hospital”
When the process takes so long, and requires us to explain all of the details of our toileting habits, it’s no wonder some people are less willing to get help.
Why are we all so embarrassed?
Then there’s the embarrassment, our learned response to our own toileting accidents. The personal shame of being dirty which applies to anyone other than young children; it’s ok for them, they haven’t learned to be disgusted yet. Just the idea of an accident in public is enough to make you shudder. We have a tendency to push it to the back of our mind and not deal with it – like mental health in some cases – but we all know that’s not really the answer. So what causes this embarrassment?
It could come from the shame associated with being unclean, becoming undesirable to our peers, or the realisation that our bodies aren’t as efficient as they used to be. Cleanliness is ceremonial in many cultures and religions, and therefore the lack of cleanliness can be seen as unholy or unacceptable. In a world where we can empathise with so many other things, we still seem to find it difficult to discuss or even accept our toileting needs.
We’ve learned to keep our bodies to ourselves to protect us from harm, but in the process have enabled a poo and wee taboo which prevents some people from getting the help they need. Accepting that continence products are just another way to improve our lives is important. They are designed to offer protection, comfort and confidence to help you stand tall and go about your day as usual. We’re happy to use period products every month, so how are continence pads any different? They are just another tool to help us keep as healthy as possible.
Less Shame, more Support
So much of being ‘grown-up’ is taking responsibility. Like paying your taxes. Earning an income. Checking whether your home insurance is up to date. These are all important things of course, but maybe we could all do well to embrace our inner child who lives without shame, disgust nor embarrassment. That wee and poo happen, and we deal with it as calmly as it were any other task. So we made a smell? It happens. Odours are one of the most worried about concerns when it comes to continence, and yet in many ways we just need to let it happen to become more normalised. Be less apologetic, and more accepting of ourselves and others.
In a world where finding toilet facilities is more of a challenge, suitable healthcare advice, and in some cases, the right diagnosis or treatment, our emotions can get the better of us. That’s where finding the right support through friends or services can make all the difference.
The Community Voice
We surveyed our community in partnership with Grace and Green to learn about our realities. What are we really dealing with quietly at home, and is there a better way? After all, we just want to help each other to live fuller lives.
When surveyed, 52% respondents told us they have lived with urinary incontinence for over 5 years.
A massive 55% told us it significantly affects their daily life. This might translate into feeling
This kind of impact is hugely negative to our wellbeing and affects more than just friendships and income. It eats away at our mental health. We’re here to address it.
In our survey, 44% respondents told us that their mental health had been significantly affected by incontinence, with a shocking 77% agreeing that there remains a strong taboo. It’s understandable that we’re all hiding our bladder control issues in a world where we’re made to feel like it’s a problem, when really it’s just a symptom that requires further diagnosis and treatment.
When treatment options aren’t ideal
What we hear time and time again is that people go to the GP, and are prescribed over the counter medications. They may not work, so the patient goes back. They may be referred, which can take weeks, sometimes months. During this time the various pelvic floor exercises and bladder training may be tried. It’s a lot to deal with, and so often we have bigger problems in our lives that demand more urgent attention.
Ultimately, if you’re experiencing leaks, you should visit your GP or local continence clinic. A male community member told us:
“Imagine the shame and embarrassment of discussing bladder incontinence with a female doctor. But now on 12 month recall, and the GP and Urology dept. have been very helpful“
The important thing to remember is that living with incontinence isn’t an inevitability, and there is help out there. As difficult as it is to get an appointment these days, your GP is your first port of call for most incontinence symptoms. They will run some tests to determine exactly what your symptoms mean, and be able to offer some management advice.
It’s worth keeping a bladder diary for a couple of weeks before visiting your GP, so that you can show them:
Bladder Diary
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To help identify your bladder habits and patterns start a bladder diary, recording the number of times you go to the loo, and any notes you may need to remember for future use. These can really help a GP to identify suitable next steps.
Your GP should make you feel comfortable and listened to, and offer some practical options to help you reach a diagnosis. Taking a friend or family member can help, as they may be able to ask questions you haven’t thought about.
Taking that first step to get help can often be the hardest, but it may just be the most important. Below you’ll find some FAQs about incontinence, as well as further information to help you get the help you need.
FAQs
Could giving up smoking help with incontinence?
Yes – nicotine can cause a deep cough over time which puts strain on the pelvic floor, and cause leaks. This is heightened by smoking irritating the bladder, and the over-stimulation of bladder muscles.
I’m embarrassed to visit the doctor – what can I do?
We know, it can be hard to take the first step towards getting help, but it’s vitally important. You can request a male/female practitioner to suit you, and it may help to see a practice nurse first. A doctor may still need to see you to prescribe any medications
How can I know if I’m buying the right continence wear for me?
We pulled together a female continence product guide which covers the most common available devices, pads and pants on the market. You’ll also find that many retailers offer their own product guide to help you find the products you need.
My incontinence is getting me down, what can I do?
Your GP can also refer you for emotional support if you find you need more help. The NHS offers remote counselling services which accept self-referrals, or you can find some face to face support in certain areas. It’s important to remember with 20% of people experiencing bladder issues (but probably not discussing it) you really aren’t alone! and support is available.
Further Information
If you’re struggling to deal with continence issues, you may find you have a trusted friend who is experiencing something similar that you can speak to. Try opening up tentatively, you may be surprised by how open others can be when you share your experiences. Our Community Support Group offers a space where you can be open and share your concerns with a like-minded community. Solidarity can sometimes help you deal with the everyday challenges.
Taking that first step to seek help can often be the hardest, but it may also be the most important. Incontinence is far more common than many people realise, and it is not something you simply have to put up with. Whether through your GP, a continence specialist, support services, or by talking openly with those around you, help is available.
Most importantly, you are not alone. Millions of people are navigating similar challenges every day, and by speaking openly, seeking support and challenging the stigma, we can create a future where nobody feels embarrassed to ask for the help they deserve.
