Photographer Asks People to Date and Connect Their Scars for #ThisIsEndometriosis Campaign
In honor of Endometriosis Awareness Month, photographer Georgie Wileman is bringing her “This Is Endometriosis” photo series to social media, asking others to participate by dating and connecting their surgical scars.
Wileman believes drawing attention to endometriosis-related surgeries is important because of the lack of knowledge about treatment.
Although endometriosis is estimated to affect 176 million people worldwide, the condition is still widely misunderstood – even by doctors. On average, it takes seven to 10 years for a person to be diagnosed with endometriosis, and many are mistreated because the doctor is either uninformed or misinformed about the condition.
Currently, the “gold standard” treatment for endometriosis is excision surgery, in which the endometriosis is carefully cut away from the surrounding tissue. However, finding a qualified doctor to perform this operation can be tricky, as the specialty is not recognized by the American Medical Association, and is not properly reimbursed by most insurance plans in the U.S.
“This operation is little known about,” Wileman explained, “leaving only those privileged enough to afford it, or go into debt for it, to have a chance at a better quality of life. This isn’t good enough.”
Other people with endometriosis may undergo different procedures, such as hysterectomy or ablation. Though these operations are sometimes touted as a “cure,” this is a myth. In reality, hysterectomy only removes the uterus – and since endometriosis is found outside of the uterus, a hysterectomy won’t treat the disease unless the person also had adenomyosis. Adenomyosis — which occurs tissue similar to the endometrium infiltrates the uterine muscles — can co-occur with endometriosis but considered a separate disease.
Ablation surgery involves burning the top layer of endometriosis lesions, which can leave behind disease and cause symptoms to persist.
Many of those with endometriosis undergo numerous procedures and surgeries. Some of these surgeries may be necessary while others, unfortunately, are not. These surgeries can also cause both physical and emotional trauma to scars, additional pain, complications or infertility.
Each scar – each surgery – tells a story. “By dating and connecting our scars, we are marking out our pain, and the true failings of our healthcare systems,” Wileman said.
Of course, each person’s scars and stories are unique, which is why Wileman wanted to bring her personal photo project to social media.
“I have documented myself in my work, and others with the disease, including those of different races and gender identities, to show that endometriosis does not discriminate,” she said. “I knew I couldn’t tell this story in its entirety alone. Endometriosis affects one in 10 born with a uterus, we are in huge numbers, and we need to use that to be heard.”
Wileman hopes that this social campaign will bring more awareness to endometriosis, and inform both patients and doctors about the reality of treatment for the disease. She explained:
I hope people will be educated on the true extent of endometriosis, and the multiple surgeries that are performed for it. This is not just a disease of “painful periods” as is often described. Endometriosis can claim your organs, your fertility and mobility. I hope people with endometriosis will educate themselves on excision surgery, and not stop fighting until they get it.
If you have scars from endometriosis-related surgeries, here’s how you can get involved:
- Date each scar (no matter how small) from an endometriosis-related surgery with pen, with each year it was opened.
- Connect your scars with a single line.
- Take a picture on white sheets, using natural daylight.
- Post with the hashtag #ThisIsEndometriosis
- Tag @GeorgieWileman on Instagram so others can find the full project and instructions.
If you haven’t had any surgeries for your endometriosis, that’s OK! You can still participate by taking a photo of yourself with a heating pad, hot water bottle or ice pack instead. (For additional information about the project, visit Wileman’s website.)
Below, check out some of the photos people with endometriosis have posted as part of the #ThisIsEndometriosis project:
Lead image via Georgie Wileman’s Instagram
Paige is passionate about helping people with chronic health issues share their stories and connect with one another.
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