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There was no guidance on how to manage or deal with this disorder” says the 31-year-old, who searched online and in support groups for women who looked like her.Īfter turning up empty-handed, Kornegay knew she had to create a safe space for women of color living with endometriosis to come together. “I felt alone and slightly abandoned by the medical industry. When Lauren Kornegay was diagnosed with endometriosis in 2011, she struggled to find other women of color dealing with the same diagnosis. These top endometriosis influencers on Instagram told Everyday Health about their stories, their decision to make an invisible illness public, tips and tricks for treating flare-ups - and how they banded together to start a social media movement. The Top Endometriosis Advocates to Follow on Instagram Like Kanayama and Niebling, many women with endometriosis are fed up with the lack of resources, and they’re using Instagram to bring an invisible illness into the public sphere. “I want to provide the correct information so patients can become their own advocates.” “The best way to protect patients, not only my patients but to protect all patients, is to provide correct information about endometriosis. RELATED: How to Find an Endometriosis Specialist Promoting Awareness to Help Women Avoid Unwarranted Treatments He was frustrated by the number of women coming to him after undergoing unnecessary hysterectomies and ablation surgeries. In 2017, he began posting on Instagram to educate women but also to educate doctors. Kanayama has performed more than 5,500 laparoscopic surgeries and sees dozens of women with endometriosis each week. Kanayama himself is no stranger to the thriving online #endo community. The director of the New York Endometriosis Center in New York City, Dr. Many Gynecologists Don’t Understand or Recognize EndometriosisĪccording to Masahide Kanayama, MD, a specialist in endometriosis treatment and gynecologic surgery, doctors often give incorrect medical advice about endometriosis because “many ob-gyn doctors still don’t know much about the details of this challenging disease and how to effectively treat it.” In fact, people like Niebling are using their platforms to break down the stigma of talking about endometriosis and creating a virtual space to address the shortcomings of medical understanding. “It helps to see more celebrity figures sharing their own journeys with endo and using social media platforms to educate hundreds of thousands of people,” says Kellie Niebling, an endo influencer who goes by on Instagram. Women with endometriosis are choosing to put variations of “endo” in their Instagram handles and bios as an empowering word to identify with. Since before Lena Dunham publicly shared her endometriosis and hysterectomy story, in the March 2018 issue of Vogue, hundreds of thousands of women have converged on social media, and the words “endo warrior” have become synonymous with advocacy for women’s health. RELATED: What Other Women Want You to Know About Endometriosis Lena Dunham Isn't the Only High-Profile Endo Warrior

Your feed will become immersed in more than two million images of women sporting the color yellow in solidarity, bloated bellies during flare-ups, and body-positive postsurgical scars. Tap Into an Empowering Endometriosis Communityįollow the most popular endometriosis hashtags on Instagram - #endo, #endowarrior, #endosisters - and the results will quickly dissuade you from any feelings of isolation. For women living with endometriosis, the lack of awareness both socially and medically can create an isolating and disheartening experience.

Despite affecting 1 in 10 women of reproductive age, endometriosis is a disease surrounded by misunderstandings, delayed diagnoses, and hit-or-miss treatments.

Endo warrior jewelry