Endometriosis Awareness Month 2022 Everyday Health MenuNewslettersSearch Endometriosis Endometriosis Awareness Month March 2022 By Julie Lynn MarksMedically Reviewed by Kara Leigh Smythe, MDReviewed: March 9, 2022A lack of education and awareness contributes to delays in endometriosis diagnosis.iStock, ShutterstockEndometriosis, often referred to as “endo,” is a condition that happens when tissue similar to the lining of a woman’s uterus (womb) grows outside of the uterus, according to the Office on Women's Health. It can cause painful periods, pain during sex, irregular bleeding, digestive problems, infertility, and other symptoms, notes Mayo Clinic. Endometriosis affects about 200 million women worldwide and about 1 out of every 10 women in the United States. Yet the disease is often misdiagnosed or missed altogether, says the Endometriosis Foundation of America (EndoFound). Lack of education and public awareness is part of the reason that endometriosis goes undetected. Endo Awareness Has Improved in Recent Years “Awareness is everything,” says Tamer Seckin, MD, an endometriosis excision specialist, cofounder of EndoFound with Padma Lakshmi, and member of Everyday Health's Wellness Advisory Board. “In the '90s, when I first began seeing patients, I realized that the pain that women experience during their periods was not believed in by doctors or loved ones. When I realized that the disease endometriosis was the reason behind these symptoms, I found a complete lack of information about it.”Sponsored Advertising Content Your Pelvic Pain Is Not Normal Tips for Endometriosis While more people know about the condition today, there’s still a significant demand for greater understanding, especially when it comes to diagnosis and treatment options. “With timely intervention and early detection, patients can have a chance at attempting to manage their symptoms before turning to surgery,” Dr. Seckin says. “Timely intervention means a patient has enough time to try to manage their symptoms and know what's going on in their body, as opposed to the all-too-common horror stories of a patient being diagnosed with endo — or not diagnosed at all — and their doctor right away telling them that a hysterectomy is the only course of treatment.” View this post on InstagramA post shared by Everyday Health (@everydayhealth) Endometriosis Awareness Days and Months From fundraisers to marches, there are plenty of events to participate in during Endo Awareness Month. March Is Endometriosis Awareness Month The Endometriosis Association began Endometriosis Awareness Month in 1993. It’s now observed worldwide through activities such as education, fundraising, and marches. To honor Endometriosis Awareness Month, the organization provides free, worldwide distribution of popular yellow ribbons and brochures. While the COVID-19 pandemic has altered the format of the usual activities in recent years, EndoFound will host several weekends of virtual events to celebrate Patient Day in March 2022, including the following sessions and topics:March 13 (10 a.m. to 1 p.m. EST): Peritoneal Endometriosis and PainMarch 20 (10 a.m. to 1 p.m. EST): Deeper Debilitating Disease and Its Definitive TreatmentThese programs will feature physician and patient-led panels, virtual coffee tables for networking, and meditation sessions. This platform is designed to help patients connect with others, learn about the disease, and share their own experiences. You can register for the events on their site. Related Awareness Days and CampaignsMenstrual Hygiene (MH) Day is May 28. National Period Day takes place in October.Invisible Disabilities Awareness Week also takes place annually in October.EndoFound’s PeriodNow campaign distributes menstrual hygiene products and endometriosis educational materials. On March 25, 2022, Endo Black, an organization advocating for African American women and women of color affected by endometriosis, will present their second annual Capital Wheel Lighting at the National Harbor in National Harbor, MD, in collaboration with several other organizations. Experiences With Endometriosis Every person with endo has their own story. Here are three of them — and these women didn’t hold back.Video Annual Community Walks Runs in Support of EndometriosisParticipating in a walk or run to support endometriosis could help you stay in shape and raise awareness at the same time. A virtual EndoMarch is planned for March 26, 2022. Worldwide, more than 300,000 EndoMarchers are expected to participate in the event. Another event, the Rock ‘n’ Roll Running Series, is scheduled for March 26, 2022, in Washington, D.C. The Endometriosis Foundation of America will host an official charity team for this race. Conferences and Meetings on Endometriosis Medical conferences provide an opportunity for researchers and scientists from around the world to meet and discuss cutting-edge treatments and the latest in patient care. Endometriosis Medical Symposium The Endometriosis Foundation of America’s annual symposium brings leading experts together to discuss cutting-edge research, treatments, and medical advances. The virtual meeting will take place March 27, 2022, from 9 a.m. to 3 p.m. EST, and the focus will be on endometriosis in the pelvis and beyond. The Endometriosis Summit The Endometriosis Summit was a virtual and in-person event that took place February 18 to 20, 2022. The goal of this three-day conference is to unite the endometriosis community as one. Surgeons, patients, and practitioners can attend online from anywhere in the world. Society for Endometriosis and Uterine Disorders SEUD Congress The 8th SEUD Congress is scheduled for May 18 to 21, 2022, in Athens, Greece. The program will feature the latest innovations on the topics of endometriosis, uterine fibroids, adenomyosis, and abnormal uterine bleeding. 15th World Congress on Endometriosis The World Endometriosis Society hosts this international conference that will take place next year in Edinburgh, May 3 to 6, 2023. The aim of the meeting is to advance clinical care and research while improving the lives of all affected women with endometriosis and adenomyosis. Endo Black ConferenceEndo Black is hosting their second conference on Saturday, March 26 to Sunday, March 27, 2022, in Oxon Hill, MD. The theme is: This is Personal, Reclaiming Our Bodies: Endo Black’s Advocate and Allies Conference. Volunteering or Fundraising Many organizations offer volunteer opportunities for people who want to spread the word about endometriosis. EndoFound has recently launched an EndoAlly program, which helps people who want to make a difference by setting up fundraisers, creating events, and raising awareness in their local communities. Similarly, the Endometriosis Association and Endometriosis Research Center offer different opportunities for those interested in volunteering. How to Spread Awareness About Endometriosis Increasing awareness about endometriosis starts with you. “The best way to spread the word about the disease is, in general, to talk about it,” says Seckin. “The time for stigma and taboo concerning menstruation is over. We need to come together and discuss women's health openly, because a painful period is not normal, and the sooner we shed this stigma, the sooner an endo patient can receive the treatment and support she deserves.” Sharing on Social Media 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: @Endofound@Endometriosis@MyEndoTeam@Endometriosis11@Endo_Jenn@Endo_black@jessicamurnane 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. Share Your Story and Tips About Living With Endometriosis You can help others learn about endometriosis and understand your medical journey by starting your own blog or sharing your story online. Submit Your Stories SpeakENDO.com, sponsored by AbbVie, offers a platform for women with endometriosis to share their stories publicly or anonymously. EndoFound and Endopaedia provide similar outlets for sharing experiences in dealing with the condition. You can also start your own blog with the help of sites like WordPress and Blogger. Submitting Tips for Living With Endometriosis Visit Tippi Endometriosis, where you can submit and get advice about living with endo. Tip It Forward for Endometriosis Join the hundreds of women — plus doctors, nurses, physical therapists, and others — who have shared their best tips for living with endometriosis. Read them all on Tippi.Tippi Getting Involved in Research Studies and Clinical Trials for EndometriosisClinical trials help researchers identify effective and safe treatments for different conditions. By participating in a study, you might receive a therapy that isn’t yet available to the public. Volunteering also paves the way for innovative treatments and could help women in the future. The ROSE (Research OutSmarts Endometriosis) study, an initiative to examine potential causes, diagnostic options, and new treatments, is enrolling women with endometriosis and those without the condition to serve as part of a control group. You can also search for clinical trials on endometriosis at ClinicalTrials.gov or CenterWatch. Sharing Resources to Help People With Endometriosis There are many online resources and support groups to help women with endometriosis learn more about their disease, find out about awareness opportunities, and become inspired by others’ experiences. “Patients need to be listened to, and their medical history needs to be meticulously taken,” says Seckin. “This is of extreme importance." In general, when looking for information about endometriosis, look for places that emphasize this. Related: Endometriosis Resource Center Some popular go-to resources for endometriosis support include:Endometriosis Foundation of AmericaEndometriosis AssociationEndoTVThe Blossom BlogEndoNewsBloomin’ Uterus The bottom line when it comes to endometriosis awareness? We’ve come a long way, but more outreach is needed. “There is not enough awareness,” concludes Seckin. “The taboo surrounding menstruation delayed the recognition of this disease, and we still have more work to do in breaking down stigmas concerning women's health.” NEWSLETTERS Sign up for our Women' s Health Newsletter SubscribeBy subscribing you agree to the Terms of Use and Privacy Policy. 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