Endometriosis Foundation of America: ‚ÄčAn Online Patient Community
Artwork: "Endometriosis Anatomy" by Jenna Wiebe of Duvet Days.
Thank You for Your Support of the Endo Community

Margaret Cianci

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In this challenging time of the COVID-19 pandemic and stay at home orders, it is all the more important to come together as a community to share endometriosis treatment and management techniques. Thank you for joining our latest webinar, Endo 101: Back to Basics. The webinar was an engaging and informative crash course on endometriosis, and we hope you learned a lot. We’re excited to bring you more conversations in the weeks to come. EndoFound continues to strive to understand how you are doing during this difficult time. By taking this survey, your input will continue to help us help you in the weeks and months to come.

A big thank you to our #GivingTuesdayNow donors, and thank you for all the birthday campaigns on Facebook, too! The dollars you donate and the fundraisers you create help to underwrite essential programs and work to support women who have endometriosis. Every donation, no matter how small, makes a difference in the lives of endo patients. I want to also thank our new partners, Key Foods, Assemblymember Linda B. Rosenthal, Diva Cares, and Period.org. We have been hard at work on a new campaign that we’ll be sharing with you next week!  

Donate Today!

In community,

Margaret Cianci
Executive Director, EndoFound

Everyone is shopping from home these days. It's our new norm for the time being. When shopping with Amazon, we ask you to please consider using Amazon Smile to support EndoFound. We receive a .5% donation from all qualifying purchases if you select us as your charity. Remember that you have to login at smile.amazon otherwise if you go straight to Amazon you’re not donating. You can also simply follow this link: https://smile.amazon.com/ch/20-4904437

Endo 101: Back to Basics—Webinar Recap

Thank you for joining us for Sunday’s live webinar Endo 101: Back to Basics. Moderator and journalist Dina Gusovsky was joined by Dr. Karli Goldstein, a gynecologic surgeon at the Seckin Endometriosis Center, and Jessica Murnane, author, podcast host, and endo patient, for an informative crash course on endometriosis diagnosis, treatment, and management.

Dr. Goldstein detailed the basics of endo symptoms, as well as the questions a specialist should ask you in your first appointment. As many patients can’t schedule appointments or surgery right now, Dr. Goldstein suggested telemedicine, as well as tracking your cycle via apps like Phendo or Flutter. Dr. Goldstein also emphasized the important difference between management and treatment options. 

To manage endo symptoms, Jessica Murnane advised following an anti-inflammatory diet, emphasizing that it’s best to start by tuning in on how a particular food makes your body feel. “We don’t always want to hear the answers our body is telling us,” Jessica said, “but I think it’s a really good indicator on how to start eating a little better for endo.” 

EndoFound will be answering the most common and urgent questions that came in during the Q&A shortly on the webinar resource page. And if you missed Endo 101, it's available to watch on our website, along with previous webinars about COVID-19 & endo. If you have topics you'd like to see in future webinars, please do not hesitate to email us at webinar@endofound.org.

Watch Endo101: Back to Basics!
Researcher Spotlight: The Rose Study

One of the most frustrating aspects of endometriosis is the 8-10 year delay in diagnosis after the onset of symptoms, which are debilitating for many women. This delay is due, in part, to the absence of a simple, non-invasive diagnostic test for the disorder. The Research OutSmarts Endometriosis (ROSE) study, led by Drs. Peter K. Gregersen and Christine Metz at Northwell Health, is developing a novel, non-invasive endometriosis diagnostic test using menstrual effluent (ME). The ROSE study is in partnership with EndoFound, and cofounder, Dr. Tamer Seckin is a principal investigator for the study.

The ROSE study is recruiting women (18 years and older) who have symptoms of endometriosis* and think they may have the disease but have yet to be diagnosed. Participants who are willing to collect a menstrual effluent sample (at home) can enroll in the ROSE study through an online confidential portal.

If you have been diagnosed with endometriosis and have friends or family members who have symptoms but are not yet diagnosed, please share this online portal with them. Spread the word about this important endeavor through social media. Help us make this test FDA approved and broadly available, to avoid the years of uncertainty experienced by women who have undiagnosed endometriosis! If you have questions about participating in the ROSE study, please email us at info@endofound.org.

Learn more about EndoFound & The Rose Study

*Symptoms of endometriosis: chronic pelvic pain, painful menses, pain during intercourse, pain going the bathroom, and abdominal bloating.

Subscribe to EndoNews for the latest in endometriosis research from around the world.

Spotlight on Endo Advocates

With endo advocate Jeanne Hale’s birthday coming up, she decided to celebrate with her loved ones by donating to a cause very close to her heart: endometriosis research. “Endometriosis is one of the most underfunded and least researched diseases out there … It took me five years of begging, pleading, doctor after doctor, ultrasounds of all kinds, CT scans, colonoscopies, endoscopes, countless blood draws, ER visits, narcotic after narcotic, to FINALLY get a diagnosis,” Jeanne says.

Jeanne encourages other endo advocates to join her in fundraising for endometriosis recognition and research. “Let’s help get some research out there,” she says. “This disease isn’t just something that’s ‘all in your head.’”

Thank you, Jeanne, and happy birthday! Do you have a birthday coming up? Consider supporting endometriosis education, research, awareness, and advocacy with a Facebook birthday fundraiser.

Start a Facebook Fundraiser
Calling All Gamers!

Game, stream, and raise awareness with EndoFound! Funds raised go towards supporting awareness programs, innovative research, and advocating for the 10 million women with endo.

Game with EndoFound!
A message from our NYC Marathon Captain Stevie Kremer!

We’re still building our NYC Marathon team according to the guidance of the New York Road Runners Club. The NYC Marathon is scheduled to take place on November 1st, 2020. Marathon Captain Stevie Kremer has an incredible summer of socially-distanced training planned that will be perfectly curated to each individual runners’ needs. If you’re interested in a chance to be a part of our fifty person team, please fill out this form

Sign Up for Team EndoFound!
Thank you to everyone across the country who has fundraised in support of endometriosis! From birthday fundraisers to running 5Ks, you make it happen. With your help, we can continue working towards increasing endometriosis awareness, education, advocacy, and research. To create a fundraiser, please visit our Everyday Hero page or set up your fundraiser on Facebook.

Follow the EndoFound on social media and be the first to hear about new research, program updates, or different ways to get involved. Our platforms provide a safe and supportive environment to connect people from around the world. Please visit our Facebook, Twitter, or Instagram and give us any feedback you may have by commenting on our posts or direct messaging us!

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Disclaimer: The information contained on the Endometriosis Foundation of America ("EndoFound") web site and social media is provided for your general information only. EndoFound does not give medical advice or engage in the practice of medicine. The EndoFound under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.

References to any entity, product, service, or source of information not related to the EndoFound in this site should not be considered an endorsement, either direct or implied, by the Endometriosis Foundation of America. The EndoFound does not recommend or endorse any specific tests, products, procedures, opinions or other information that may be provided on any linked web sites. The linked web sites may contain text, graphics, images or information that you find offensive. EndoFound has no control over and accepts no responsibility for such materials.

We hope that you find endofound.org useful in providing information and in helping you make your own health care decisions.