Georgie Wileman, an England-born, New York–based photographer, is tearing the façade off endometriosis. Her severe pain began when she was thirteen, but Georgie wasn’t diagnosed until she was 26. Her case isn’t unique; from onset of symptoms, endometriosis takes on average eight to ten years to diagnose.
One in ten women and trans men endure this crippling, misunderstood disease. In the past three years, Georgie’s life has been consumed by six operations — her body reeling from unrelenting pain.
But she refuses to suffer in silence. Often dubbed the “invisible disease,” endometriosis is a gynecological disorder where lesions similar to the lining of the uterus grow elsewhere in the body, repeatedly bleeding, scarring, and fusing internal organs. Symptoms are usually worse during one’s period, often causing pain and contractions similar to labor. Cruelly, this disease is also a leading cause of infertility, something Lenny’s co-founder Lena Dunham has written about poignantly.
And yet, the vast majority of people haven’t heard of endometriosis, or think it’s just painful periods, sometimes restricting pregnancy. “That’s not true,” Wileman clarifies:
“There’s just so much to this disease that goes unseen and misunderstood, and we need to address that because this is a disease that can completely disable someone — it can take parts of your bowel, it can mess up your reproductive system, it can grow in your lungs. I’ve met women who have collapsed lungs during their period. I’ve met a woman who had lesions in her nose and had nosebleeds during her period. This is rare. But none of this seems to be known by a vast amount of doctors.
You’ll see people visiting their doctors repeatedly for classic endometriosis symptoms: pelvic pain, abdominal swelling, bowel problems, bladder problems, lower back pain. They still go undiagnosed.
There is so little understanding of things like the health impact of not being able to eat or digest food properly; they don’t realize the effect it can have on the immune system, often causing repeated infections. The fatigue can sometimes restricting people to a wheelchair; there can be issues with adhesions that cause pain.
I’ve had strangers bless me in the street or ask to pray for me. My neighbor thought I was terminally ill. This disease is madness.”
Presently, this madness is portrayed online by makeup-clad models with slightly squinted eyes, holding their gut as if they have mild indigestion.
Wileman knows that’s bullshit. Using photography, she’s on a mission to reinvent endometriosis representation. Her series ENDOMETRIOSIS uses cuttingly honest images to expose what this illness looks like. Given her recent immobility, this series primarily documents Wileman’s own experience — though she says she prefers “to be behind the lens, not in front of it.”
She’s presently expanding the series into a book to document the extent of this disease’s impact. It’s often believed to predominantly affect childless white women in their 30s; solely because this demographic often has the wealth, resources, and privilege to pursue their diagnoses. “Endometriosis affects one in ten born with a uterus, across race and gender identity. I want my work to represent that.”
Wileman’s full series is available online. In the captions below, she unpacks the vision behind nine of her most iconic photographs.
I had the circular tattoo done my arm after my fourth surgery (top image). I was struggling emotionally, and to me, the circle represented continuation, and the continuation of life. What followed were two more operations within a year, adding three more scars to my abdomen. Unfortunately, this is often the way with endometriosis — it’s a ruthless, unrelenting, exhausting disease.