We agree with Emma Barnett (Endometriosis showed me we need better ways to talk about women’s pain, 22 October) that “pain is notoriously hard to describe and pinpoint” for women with, or waiting for a diagnosis of, endometriosis. When we interviewed women with an endometriosis diagnosis, they described different types of pain, including pelvic, sexual, bowel, bladder, back, lower limb, chest and headache. They also described different patterns of pain and intensities, including cyclical, on and off, constant, random and unpredictable. Each woman had her own constellation of pain. They had between three and eight types.
In our study, women used the following descriptions of their pain: ache, cramp, pushing or squeezing inside, sharp stabbing, a knife on your inside, muscles slowly ripped out, a pin being shoved in, tearing inside, excruciating, burning, dull sensation, pinching with a pair of pliers. We highly recommend Stella Bullo’s work on the language of endometriosis pain to help women describe what they’re feeling and get the help they need.
Dr Sarah Drabble and Prof Alicia O’Cathain
University of Sheffield