Updated on August 14, 2023
While endometriosis can feel overwhelming, remember that you are not alone. There are millions of people worldwide who have endometriosis, as well as groups and organizations working to spread awareness, increase understanding, lend support, and advocate for everyone affected by this condition. If you or someone close to you has endometriosis, these sites may be worth a visit.
Endometriosis Foundation of America (EFA)
If you’re looking to learn more about endometriosis or participate in research, the Endometriosis Foundation of America (EFA) is a great starting point. This nonprofit organization has pages of information about the condition, including information on treatments, patient stories, ways to participate in the endometriosis community, and advice on finding a specialist. It also offers opportunities to participate in research—including over the phone or online—to help improve the healthcare community’s understanding of endometriosis. Visit the website at endofound.org. From there you can also check out EndoFound’s Facebook page, Twitter and Instagram accounts, and YouTube channel.
Endometriosis.org
Whether you’re just starting to learn about endometriosis or are ready for a deeper dive into your patient education, this site provides lots of useful information, including a glossary and FAQ, detailed pages on different treatment options, and a list of recommended books. Particularly helpful to new patients is a worksheet that can help you know what to expect—and give you ideas on what questions to ask—the first time you discuss treatment options with a healthcare provider. Visit endometriosis.org.
MyEndometriosisTeam
Emotional support can be an important part of managing endometriosis, and it can be helpful to talk to other patients who are living with the condition. MyEndoMetriosisTeam is part online support group, part social network for people who have endometriosis. It’s a place to ask questions, vent, make friends, and share your knowledge and advice for others with the condition. Membership is free, and you can log in with either an email address or a Facebook account. Visit myendometriosisteam.com.