Endometriosis Foundation of America: ‚ÄčAn Online Patient Community
Artwork: "Endometriosis Anatomy" by Jenna Wiebe of Duvet Days.
Putting Patients First

Margaret Cianci

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One of the most startling endometriosis statistics is the 7-10 year delay in diagnosis. Endo patients suffer from misdiagnosis due to a lack of education in the medical community, among other reasons. As Eileen Hedger writes in her Endo Story this week, one doctor did not believe that she could bleed so much during her period, and proceeded to tell her that she was tracking her cycle wrong.

The racial bias in healthcare, barriers to optimal treatment among lower-socioeconomic status women, and now yesterday's Supreme Court ruling on limiting access to birth control only add to the problem. Making it more difficult for women with endo to get the timely care they deserve is a step backward.

Your ongoing support of EndoFound helps move us forward, but we still have a long way to go. We’re launching a resource portal for racial inequity in endometriosis care soon. We’re also continuing to partner with organizations to amplify each other’s voices. Check out the Black Women's Health Coalition, which is advocating for six essential hospital changes: equity accountability, health education for adolescents, diversity training, prejudice-free communication, a pain management protocol, and inclusivity in research. 

In our COVID-19 world, EndoFound continues educating the public and medical professionals, advocating for more research funding, and providing endometriosis education and awareness programs. The pandemic poses unique difficulties for those living with endometriosis and we stay committed to supporting you. 

Please consider donating today. Your support is the key to a better future. Thank you! 

In community,
Margaret Cianci

Executive Director, EndoFound

Endo Tip of the Week:
How to Move Through Pain

While many individuals with endometriosis practice yoga to combat symptoms, some days it can be difficult to get moving. In times like these, how do you continue to move through pain? Endo warrior and yoga instructor Kym Klein suggests trying to visualize your pain as a symptom, so your movement can control that symptom. She also recommends trying to move your body every single day. Consistent movement will help you minimize pain.

Join us for HIIT Pilates!

For an energizing start to your weekend, join Kym Klein on Saturday, July 11th at 11:30AM ET for HIIT Pilates. This fiery circuit-style class incorporates both yoga and Pilates principles for an invigorating, low-impact 45-minute workout. You’ll strengthen your core and challenge your body without the pounding effects of high-impact movement. At the end of the class, you’ll feel strong and empowered. This class is great for individuals with and without endo — invite your friends!

Sign up today!
The Black Women’s Health Coalition

Two weeks ago, Samantha Denäe, Lauren Kornegay, Kyla Canzater, and April Christina launched the Black Women’s Health Coalition. The BWHC’s mission is to change inequitable healthcare for individuals of color by advocating for six essential actions that hospitals should take: equity accountability, health education for adolescents, diversity training, prejudice free communication, pain management protocol, and inclusivity in research. The Black Women’s Health Coalition also provides statistics, resources, and pre-written templates for you to easily send out to the ten major hospitals in the United States to demand a change in healthcare. You can learn more about one of the founders, Samantha Denäe, in our feature on her dedicated endo education and advocacy work here.

Advocate for Change!
Giving Women the Tools to Seek Early Diagnosis & Treatment: Fempower Health

Georgie Kovacs spent four years struggling with infertility before getting diagnosed with endometriosis. She was otherwise asymptomatic. Driven to create change and spread accurate medical information to and for women, she founded Fempower Health. Fempower Health’s mission is to simplify an individual’s endless search for a diagnosis and treatment. Featuring a highly informative podcast and a critical survey, Fempower Health centers the patient’s direct experience. Georgie explains that when women share information with one another, they have the tools to make their own highly informed decisions. By participating in Fempower Health’s survey, you can help countless other people pursue the answers and treatment they deserve.

Learn more about Georgie’s Mission
A Sentence to a Life in Pain: Eileen Hedger's Endo Story

Eileen Hedger has struggled with endometriosis since her first period at the age of twelve. After countless misdiagnoses, doctor visits, and years of pain, Eileen finally found the answers she needed. “Endometriosis,” Eileen writes, “while not a death sentence, is a sentence to a life in pain, a life with struggles, and a life we don’t deserve.”

Read Eileen's Story
PeriodNow: A Look at Our Endo Education Inserts

PeriodNow is on a mission to combat period poverty and spread endometriosis education in NYC. We’ve included an endometriosis insert with every period package distributed at food banks across NYC—in English and Spanish. Many people still have never heard the word endometriosis, and we hope these inserts can spark symptom recognition and treatment-seeking behavior. But we need your help to continue this critical mission. With a donation of $45 or more, you supply someone with six months of period products—plus, we’ll send you the exclusive EndoFoundxDuvet Days Endometriosis Anatomy tote bag. Together let’s get those in need the essentials they deserve.

Help PeriodNow!
Research Spotlight: New Treatments to Improve Patients’ Quality of Life

In our latest Researcher Spotlight, Dr. Serdar Bulun, John J. Sciarra Professor of Obstetrics and Gynecology and Chair of the Department of Obstetrics and Gynecology at Northwestern Medicine, explains how stromal cells in the endometrium of endometriosis patients are epigenetically defective which has led his team to focus on these cells as a potential therapeutic target. His work investigates whether these cells can be replaced by using induced pluripotent stem cells. Dr. Bulun shares how he has observed the detrimental impact endometriosis has on his patients' lives, and that the main motivating factor for conducting this research is to discover new treatments to improve patients' quality of life. He closes by explaining that an ideal model to study endometriosis is still lacking and shares his insight into the research he believes should be conducted on endometriosis going forward.

Watch Dr. Serdar Bulun’s Interview
EndoNews: Using Statistics to Show Healthcare Inequities

This week, EndoNews covered an article published in Uptodate by Dr. Allison Bryant, who discusses the concerning inequalities in healthcare practices related to race and ethnicity in the US. Using documented examples in obstetrics and gynecology (such as maternal death, postpartum hemorrhage, preterm birth, gestational diabetes, and more), Dr. Bryant highlights the statistics that show a great discrepancy between the healthcare that Black women receive and the healthcare that white women recieve.

Read More
Quarantine Streaming: Get Better

Leslie Mosier, CEO and owner of celebrity dog Doug the Pug, wrote “Get Better” when she was in extreme pain from endometriosis. She decided to release her song after being inspired from Endometriosis Awareness Month. The proceeds of “Get Better” go to EndoFound and The Endometriosis Coalition. Watch the video, and buy the song here!

Listen to Get Better

Thank you to everyone across the country who has fundraised in support of endometriosis! From birthday fundraisers on Facebook 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 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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We hope that you find endofound.org useful in providing information and in helping you make your own health care decisions.