Dataset of Pain Metaphors
Explore how people describe endometriosis pain — metaphors, sensations, and embodied language.
Explore Dataset
The Language of
ENDOMETRIOSIS
Turning invisible pain into words
Turning invisible pain into words
The Language of Endometriosis began as a linguistic investigation into how people describe chronic pain when ordinary words are not enough.
Through research on metaphors, narratives, and patient communication, it explored the ways language shapes understanding, or misunderstanding, of endometriosis.
What started as academic research evolved into a wider advocacy project, amplifying the voices of those whose pain had long been invisible. It brought together science, storytelling, and empathy to influence awareness, education, and healthcare communication.
Today, The Language of Endometriosis continues as a digital initiative, translating research insights into tools that make invisible pain visible, from public resources to the Explain My Pain app. It stands as a bridge between lived experience, linguistic knowledge, and technology.
“That’s the problem with invisible disease. No one knows what we really deal with from day to day.”
“It feels as though my pelvic organs are being carved out with a white-hot yet dull spoon. Sometimes I imagine my uterus trying to claw its way out of my body.”
“The next time you hear about endometriosis, please remember how devastating this disease can be… treat them with respect and compassion.”
“Having a diagnosis was a relief. It meant I wasn’t making things up or exaggerating. I was finally validated in my experiences.”
How linguistic research becomes data, insight, and technology.
Explore how people describe endometriosis pain — metaphors, sensations, and embodied language.
Explore Dataset
Read studies, the white paper, essays, and media that connect linguistics, empathy, and care.
Browse Publications
A bilingual tool that helps patients and clinicians communicate pain clearly and humanely.
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Endometriosis pain is often invisible to others and difficult to describe with ordinary words.
People reach for images and comparisons to make the experience understandable.
Figurative language, such as metaphors and similes, acts like a bridge between
what the body feels and what others can grasp.
Here are some examples of how people with endometriosis use vivid, sensory language
to communicate their pain experience. For a full dataset of pain descriptors,
visit the Explore Dataset section above.
“Like fire under my skin…”
“The burning never stops...like fire trapped under my skin, radiating outward and taking over everything I try to do.”
“Like a rope tightening around my insides…”
“It’s as if ropes are tied tightly around my organs and someone keeps pulling down. Every movement feels like resistance.”
“Some days I feel like a story half-told…”
“Because so few words capture this illness, I borrow metaphors, stretch them until they almost fit. The story is still becoming.”
Share your experience to improve communication and care. Choose one of the options below.
Use your own words—metaphors, comparisons, anything that helps others “get it”.
Open formA drawing, photo, or collage that shows how you visualise it. (JPG/PNG preferred)
Upload imageTell us about an episode, a consultation, what helped, or what you wish others knew.
Submit story