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'This is endometriosis' campaign hopes to educate women and create a community

The social media campaign is helping women learn more about endometriosis and feel less alone.
/ Source: TODAY

When Hillary Wright was experiencing serious abdominal cramping in 2014, she knew something was wrong. She visited doctor after doctor, but no one could help to manage her pain.

“I was having pain all the time, not just on my menstrual cycle, which is not a fun way to live,” Wright, 33 of New York City, told TODAY. “Something wasn’t right and I had to figure out what it was.”

When she described her symptoms, an aunt, who is a nurse, thought she knew what was wrong: She suggested Wright had endometriosis. It’s a condition where the tissue of the uterus grows outside the uterus, which is “associated with pain and infertility,” Noah Rindos, assistant professor of obstetrics, gynecology and reproductive science at the University of Pittsburgh, who has not treated Wright, told TODAY.

Despite her aunt's suggestion, Wright struggled to find a doctor who believed her. While one of her doctors finally agreed to perform surgery in 2015, he didn’t think he would find anything.

“We went into that surgery almost as if it was going to be an exploratory surgery,” she explained. “And he found the endometriosis and the scaring, and he removed that through excision surgery.”

Wright recently shared her story and a picture of her abdomen with the dates of her surgeries and lines connecting her scars as part of #thisisendometriosis on Instagram. Photographer Georgie Wileman started the social awareness campaign to help people learn about the disease and its treatments.

“Endometriosis is often thought of as only painful periods,” Wileman, 30, of Brooklyn, told TODAY. “It is a very serious disease that needs to be taken seriously.”

Rindos agreed. While the exact number of women with endometriosis remains unknown, he said 10 to 15 percent of women have it. And, many people experience such great pain that they struggle with normal daily tasks.

“It is associated with pain that starts right before menstruation and lasts a few days after. Often women will have pain with intercourse,” he said. “It can be such a debilitating disease.”

Wileman’s self portrait of her tummy with its scars and surgery dates was first displayed in the National Portrait Gallery in London as part of the Taylor Wessing Portrait Prize. She wanted a way for others to share their experiences and realize they are not alone. That’s when she thought of the hashtag. But it hasn't always been easy to share or hear about other's tales. Wileman's experience with the disease has been traumatic.

“When I got sick when I was 13, I just didn’t get better. I struggled to live a normal life,” Wileman said. “When you have been sick for so long and everyone tells you that it is nothing … you start to distrust yourself.”

Wileman had her first of five surgeries when she was 26 and doctors used what’s known as ablation, burning the diseased tissue to stop its growth.

Since she started the hashtag this year, dozens of people, including trans men, have shared their experiences.

“I find it very difficult to read the stories,” Wileman said.

She hopes the campaign will encourage people to learn more about the condition and treatments, such as excision surgery, where doctors remove all the diseased tissue as if it were cancerous. Many women do not know about it and Wileman believes it leads to a better outcome. While there needs to be more research to better understand it, Rindos said survey data from his research shows that women are happier and are less likely to need a repeat surgery with excision.

Helen Wilson-Beevers, a freelance journalist in Northumberland, United Kingdom, also participated. She frequently writes about endometriosis. Since she was 14, she has struggled with it and underwent 11 procedures, including a hysterectomy, to try to ease her discomfort.

“Each procedure was only a temporary fix, which added to how extremely frustrating and demoralizing the whole process was,” the 35-year-old told TODAY, via email. “Women wait years for a diagnosis, and during that time, (they) just aren't heard. This campaign offers support to other endo sisters, as well as visually illustrating just how horrific the disease is.”