Why People With Endometriosis Are Photographing Their Scars

“I got sick when I was 13 years old, and I didn’t get better,” says Georgie Wileman, a 30-year-old photographer based in Brooklyn. “I struggled, but tried to live a normal life between ambulance trips and hospital stays. I was in and out of a wheelchair from pain and fatigue... yet I didn’t get a diagnosis until I reached 26.”

The diagnosis? Endometriosis, a condition in which tissue similar to uterine lining grows elsewhere in the body — usually on the outside of the uterus and nearby organs. During menstruation, this tissue acts like uterine lining does: thickening, breaking down, and bleeding. But, because it's not actually in the uterus, it has no way to leave the body. As a result, endometriosis — which affects one in ten people born with uteruses worldwide — can cause severe pelvic pain, especially during menstruation and during or after sex. It can also cause heavy periods, bleeding or spotting between periods, fatigue, digestive issues, and in some cases, difficulty conceiving.

Wileman’s thirteen-year wait for a diagnosis isn’t unusual. According to the Endometriosis Foundation of America, it takes an average of 10 years for a person to receive a diagnosis. People with endometriosis (sometimes shortened to endo) often say that when they sought help, their pain was dismissed as normal period cramps.

"Endometriosis is an incredibly isolating disease," Wileman says of her decision to document her experience in 2017. The first photo she took was a with a self-portrait: she is curled up in pain on white sheets with her partner Asher’s feet in the frame. When she started the project, Wileman was in severe pain, so she focused on self-portraits. But she soon began photographing other people with endometriosis, documenting intimate moments of pain, fatigue, and frustration. The photos — both the self-portraits and the images of others — form a series called This is Endometriosis.

Wileman's self-portrait, "2014-2017," was displayed in London's National Portrait Gallery in 2017. It shows her bare abdomen, black pen dating her scars and connecting them to form a five-sided shape. Now, in honor of Endometriosis Awareness Month, she is launching a social media campaign based on this image: with help of her assistants Sadie Sanders, Sayaka Ueno, and Martina Tuaty, Wileman has photographed other people's endometriosis scars, and invites others to take their own photos as well. Search #ThisIsEndometriosis on Instagram and you’ll see hundreds of others sharing what Wileman describes as “constellations of scars."

"Before meeting others, and seeing myself reflected, I felt that maybe I was alone in my symptoms," Wileman says. "Years of misdiagnoses and disbelieving doctors had left me with a distrust in my body and what was happening to me. With every person I meet, we find our lives have crossed and merged, a story repeated with every subject. It has been an incredibly painful, but cathartic experience."