Perspective by Georgie Wileman and August 12, 2022 at 9:00 am EDT Placeholder when loading article actions When she was 13, Georgie Wileman began suffering debilitating abdominal pain and fatigue that would change her life forever. For more than a decade, Wileman struggled to get a diagnosis for her condition. At 26, she was diagnosed with endometriosis, an inflammatory disease in which cells similar to those lining the uterus grow outside the uterus. Symptoms can vary drastically from patient to patient, but the disease can cause chronic pain, infertility, painful menstruation, heavy bleeding, gastrointestinal problems and extreme fatigue. In Wileman’s case, the pain from the disease immobilized her for a while. Frustrated that her own experiences were not reflected in endometriosis stories, Wileman, now 34 and a photographer and filmmaker, began photographing herself with the help of caregivers. As her health improved, she began photographing others living with the disease that she learned about through online endometriosis communities. He set out to create “true representation” of what the disease looks like, who it affects and how it affects their daily lives. “It was a very powerful experience, really,” Wileman said, reflecting on the first time she photographed another person with endometriosis. “It was the first time I spent time with a person who was as sick as I was.” The result is ‘This Is Endometriosis’, a photo and documentary project, and a social media campaign, #THISISENDOMETRIOSIS. One of the goals of the project was to dispel a long-standing misconception that the disease only affects childless white women. Endometriosis affects about 10 percent of those born with a uterus, regardless of race or gender identity. A long delay between the onset of symptoms and the diagnosis of endometriosis is common, said Iris Kerin Orbuch, a California-based endometriosis specialist. “You can imagine 10 years of pain, 10 years of bowel problems, 10 years of anxiety and depression because they go to the doctor and they look normal,” Kerin Orbuch said, explaining that the physical and psychological effects of endometriosis can worsen. over time. He compared the accumulation of pain to the difference between stubbing the toe and the foot every day for 10 years. “What happens is your whole body feels like it’s on fire.” Despite the long list of symptoms, endometriosis is often thought of as “just painful periods,” Kerin Orbuch said. But pain caused by endometriosis can exist outside of the menstrual cycle and be present every day of a person’s life. The severity of the disease is also often misunderstood. “One could have a belly full of endo and not be in pain,” Kerin Orbuch said. “Someone could have an IV site and be in a lot of pain and use a walker.” When Wileman was diagnosed, she was initially treated using ablation, a laparoscopic surgical technique that burns away the top layer of endometriosis but leaves the underlying endometrial tissue. As she underwent three ablation surgeries in 18 months, each one took a worse toll on Wileman’s health and body. With so much pain, she was given a mixture of morphine and nerve blockers. She became bedridden. Finally, through an online endometriosis community, Wileman heard about a surgical technique called an excision. The technique cuts out endometriosis tissue and is considered the gold standard of treatment by experts. She has since had two surgeries for endometriosis and is preparing for another. She still lives with enough pain that she uses a cane to help her walk and a wheelchair as needed. In the images for her work, Wileman often focuses closely on people’s abdomens, noting the dates of the multiple surgeries they underwent for treatment. In a social media campaign she started, #THISISENDOMETRIOSIS, she encouraged people to recreate the look with their stomachs. A film she made, which shares the name of her photo essay, debuted at the Hot Docs Canadian International Documentary Festival this year and is on the film festival circuit. Created by a volunteer crew, many of whom have had endometriosis, it uses Wileman’s own story as an example of living with the disease. It’s “a movie that lets you know what it feels like to have endometriosis,” she said. The film also allowed Wileman to return to her work on endometriosis years after she had stopped making pictures about it. “I keep coming back to it, one way or another,” Wileman said. “This project is bigger than me.”
