Like “tightening barbed wire” or “a womb full of nails and daggers” – these are just two ways women describe the debilitating pain of endometriosis, in a new “pain dictionary” that aims to reduce diagnosis times for the condition.
One in 10 women are thought to experience endometriosis – which equates to 176 million women globally – yet astonishingly, it still takes an average of seven and a half years to be diagnosed.
Endometriosis occurs when tissue similar to the lining of the womb grows outside the womb. This tissue bleeds monthly, but there’s nowhere for this blood to go.
It can cause excruciating pain, like “organs wrapped in slowly-tightening barbed wire, followed by sudden intense tightening pain which can be so intense it’s almost difficult to breathe”, says Emma Sutt, one of the illustrators involved in the project, who has endo herself.
Many women experience delays in diagnosis and treatment due to perceptions that even severe period pain is ‘normal’. Over half (51%) of women and men (52%) think period pain is something women should endure, according to research by Bodyform.
It means many endometriosis sufferers are shamed into silence, while medical professionals underestimate the impacts of living with the condition.
In reality, endo can destroy women’s confidence, sex lives, careers and mental health. In one study of 7,000 women across 52 countries, over 40% had given up or lost their job because of endometriosis.
The pain dictionary is now available as an e-book and in hard copy for GPs who want to gain a better understanding of the condition. It’s hoped it will also give women “new language” to describe their pain.
Currently, healthcare professionals tend to ask patients to describe their pain on a scale of one to 10, but the experience of pain is often highly individual – and often can’t be reduced to a number.
The dictionary is part of #PainStories, a campaign by Essity, the creator of Libresse and Bodyform, designed to tackle the gender pain gap.
“A lot of women think painful periods is normal but actually, it’s not, particularly when the periods are starting to affect activities in your daily life,” says Dr Shireen Emadossadaty, a GP and women’s health specialist who has worked on the campaign.
“Opening up the conversation around period pain will encourage women to see their GP, to be persistent about their symptoms and hopefully we can bring down that diagnosis time. You’re not alone, period pain is common but it’s not normal and it’s not something you should be suffering with.”
People with endometriosis were asked to describe their pain, and their testimonials were then turned into striking illustrations.
These illustrations appear in the book, as well as a new digital ‘Pain Museum’, an exhibition offering more information about endometriosis.
Here are just some of the artworks, coupled with quotes about how it really feels to live with endometriosis.
Fire sickness, by Venus Libido
“The pain burns, stings and aches sometimes all at once. I feel it build up in my lower body like fire, and hot knives pushing from the inside out. The pain travels from my uterus across my stomach and around my sides, down through my legs and up my back until it starts all over again from the source. I feel sick and exhausted from the pain overriding every part of me.”
Misery Roulette, by Selby Hurst
“It’s a fun-sponge roulette of misery. Cramps that stop me moving, yo-yoing emotions, gut-wrenching nausea, being sick, wanting to eat nothing and then everything, back pain, breast pain, alarmingly painful constipation, diarrhoea so bad you can’t leave the house, headaches, migraines, worsening depression, fatigue, anxiety, stress and a whole heap more.”
Inner Nails, by Augustine Cerf
“Hundreds of nails piercing my uterus, my whole pelvis in agony. The pain radiates down my legs, and through my whole body. From one second to the next, I can’t stand up.”
Torture Grips, by Em Cooper
“Like torture. Like somebody is gripping, squeezing, cutting, prodding, stabbing you inside, and won’t let go. The waves of pain last for so long you can only take some painkillers, curl into a ball, and cry yourself to sleep.”
Inner Wringing by Augustine Cerf
“It’s like someone’s wringing my organs. And unbelievable tugging.”