Endometriosis Awareness Month 2022

If you can’t attend a conference or volunteer, social media might be a good way to spread awareness about endometriosis and connect with others.

Most of the large resources, such as Endometriosis.org, the Endometriosis Association, Endometriosis Research Center, and Endopaedia, have an active presence on Facebook. Another private group, Nancy’s Nook Endometriosis Education, has a sizeble following.

You can join the official social support network of the Endometriosis Foundation of America at MyEndometriosisTeam.

Related: The Top Endometriosis Instagrammers — and Why They’re Important

There are also several communities and advocates on Twitter or Instagram, including:

Jenn Schropp (@Endo_Jenn), a patient, educator, and advocate, will be participating in Everyday Health’s Endo TweetChat session on March 27, 2022, at 1 p.m. EST.

Schropp, who was diagnosed with endometriosis in 2018 after living in pain for 20 years, has made it her mission to make the disease known and recognized by the public. She shares her stories and experiences on her Twitter page and says other women often reach out to her for advice.

“When I was diagnosed, I made a promise to myself that I would not be silent about endometriosis. I would speak up not just for myself but for those who feel silenced,” she says. “Spreading awareness is important to me because I didn’t know what I was getting into when I was diagnosed, or before that. I will fight until there is no fight left in me so that young girls will be heard.”

#UpEndo and the House Endometriosis Caucus

In early March 2020, former Iowa congresswoman Abby Finkenauer launched the House Endometriosis Caucus to increase education and to raise Congressional funding. The Endometriosis Foundation of America also created a petition to help support the bipartisan caucus to raise Congressional funding for research. Representative Finkenauer and EndoFound used the Twitter hashtag #upendo to invite Americans to join the movement to up endo awareness, up endo funding, and up endo research.

In July of 2020, the U.S. House approved increasing funding for endometriosis research from $13 million a year to $26 million a year.

“Endometriosis is under-researched and suffers from a lack of proven and effective treatments,” said Finkenauer in a statement released by her office. “Doubling research funding will provide critical additional capacity for studying endometriosis, developing effective treatments and improving the quality of life for millions and millions of women. This is a game-changer.”

Get Political

Becoming an endometriosis advocate is an opportunity for you to use your voice to help promote policies that could benefit other women. One way to make a difference is to join organizations in participating in their advocacy campaigns, which often prove successful.

“In 2019, after a two-year advocacy initiative with New York State elected officials, EndoFound succeeded in passing the first legislation in the country to address endometriosis,” says Seckin. “Now, New York State will call for materials on endometriosis to be available to school districts and medical professionals across the state.”

EndoFound’s UpEndo Coalition is an effort designed to promote advocacy, educate the public, and raise awareness.

In addition to advocating on behalf of charities, you can start your own initiative through websites like Change.org and Avaaz.