“A powerful tool that has a place in every GP’s surgery.”  –– Dr Emadossadaty, NHS Doctor

“I love that now when anyone asks me what endometriosis feels like, I can just open my phone and show them this image. I’ll also be showing any doctor who tells me my pain can’t be that bad, a regular phrase that many endo sufferers hear far too often.” – Venus Libido

“Thank you. It’s medicine.” – Endometriosis sufferer

The idea:

We took #wombstories’ radical approach of taking women’s subjective experiences and emotions seriously, and used it to create a diagnostic tool for endometriosis.

Most doctors ask “what does your pain feel like on a scale of 1-10?” but pain is felt, not counted; it is complex and subjective. We asked endometriosis sufferers how their pain really feels –– from their descriptions, we created The Pain Dictionary, a new visual and verbal language for endometriosis pain, brought to life by female artists, and artists with endometriosis. The dictionary gives those with endometriosis the tools to express their pain properly to doctors, in ways numbers never could. It also helps those still suffering without a diagnosis to recognise their severe pain as a problem, combatting the misguided belief that bad period pain is “normal”, and quickening diagnoses. 

It lives first and foremost on Instagram, putting it at the heart of endometriosis online communities, where many go to find information and solace, in response to a medical research deficit. As a physical book, we’ve put in the places where it can make the most difference: doctor’s waiting rooms, school nurse offices, and in the hands of influencers.

Our extensive research project, The Pain Report, explores the pain gap worldwide through interviews with experts and patients, identifying key diagnostic barriers. Whilst The Pain Dictionary foregrounds the subjective experience of people with endometriosis, The Pain Report pushes the needle forwards on a cultural and systemic level: one gives us new language for pain, the other shows us why we so desperately need it.

Bodyform dared to subvert the norm of the category (projecting only positive representations of periods) and disrupted the clinical approach to pain, showing the world that women’s painful experiences are not only emotionally complex – they’re worthy of being heard. The campaign showed that women’s emotions, so often dismissed as “hysterical” or overreactions, are not the problem, they’re the solution.

The background:

Endometriosis is a widely misunderstood chronic pain condition, which affects 1 in 10 women worldwide. It’s as common as diabetes, but takes on average 8 years to diagnose. 54% of people – 74% of men – in the UK don’t know what endometriosis is.

#Painstories aims to close the gender pain gap, one story at a time. Women were only allowed in clinical trials in 1993, so it’s no wonder we still have a significant pain gap. Gender bias runs deeply within medicine: the consequence is lack of knowledge, funding and empathy. Women’s pain is systematically doubted and dismissed; they’re called liars and not considered reliable witnesses to their own bodies. A dearth of research leaves many suffering without proper treatment, with progress stymied by the common misconception that pain is just a “woman’s lot”.

Despite being the most common way to express and diagnose pain in healthcare settings, our Pain Report identified the clinical 1-10 scale as a key diagnostic barrier – the dictionary was created in response to these failings of the numeral pain scale.

Results

#Painstories represents a systemic change in the way pain is defined, recognised and treated. It was recognised as a groundbreaking tool and praised by healthcare professions across multiple disciplines worldwide.

Our dictionary gained traction with coverage in global and national publications from The Metro, to The Huffington Post, and Glamour. It resonated strongly with the online endometriosis community, garnering praise from influencers with the condition, like Venus Libido and Kate Mahon, whose followers number in the 100s of thousands.

We’ve seen extremely high engagement on posts, with comments like: “I’ll be sharing this with anyone who asks about my pain now”, “Thank you thank you thank you. Being represented means EVERYTHING”. We’ve seen people in the comments say things like “Oh my god, I think I have this” and watched the community rally around them to help – allowing us to watch the dictionary shorten diagnosis times before our eyes, on social.  

In Russia, the brand held seminars with almost 3000 patients and 3000 healthcare specialists to raise awareness of endometriosis, treatment of the condition and to encourage doctors to use the Pain Dictionary as a diagnostic tool. It was so successful that the leading gynaecological clinic we worked in partnership with will now be running such sessions on a regular basis.

The campaign also reached almost 15,000,000 people in Russia, and garnered 90% positive sentiment, an incredible feat to help spread awareness of a condition in a market where awareness is even lower.

Engagement rate with pain posts spiked by nearly 500% compared to previous brand posts, with hundreds of women downloading the Pain Dictionary and the Pain Report.

In the UK, a 5p per pack donation for Endometriosis UK raised almost £9000 for the charity.

Through both our Pain Dictionary and Pain Report, the campaign started a long-overdue conversations to catalyse progress –– and put forward the tools and research needed to inform systemic change.