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As we see COVID-19 cases increasing across the country this week, we know that elective surgeries are once again being affected. From everything we hear, the pandemic will be with us well into the fall and winter, continuing to complicate endometriosis care for all. 

We know it’s challenging rescheduling doctor appointments, operations, and IVF treatments. From acupuncture and massage therapies to many other alternative and complementary therapies for endometriosis, it’s been difficult to set a regular schedule to manage your pain.

We began our weekly Wellness Workshop Series last month to share support and pain management practices with you. The workshops provide workouts, tips, and classes to build community and raise spirits. We will be continuing the program, so please let us know what you’d like to see added, and of course, if you’d like to offer a class. 

This week, EndoFound welcomes Melissa Boudreau to the new position of Marketing Director & Outreach Coordinator. Melissa is an endo patient advocate, and you may know her from her dedicated volunteer work for EndoFound and her podcast, The Cycle. Welcome, Melissa!

Finally, we’re spotlighting two inspirational endo advocates this week: The Endo Educator Samantha Denäe and political commentator Ashley Pratte. Thank you both for the hard work you’ve been doing for the endo community.

As we increase our resources to support both endometriosis patients and those offering care for endo patients during these unprecedented times, we’d like to hear from you. EndoFound is most effective when we listen, reach out to our community, and implement solutions. Please email us at info@endofound.org.

Have a healthy and safe Fourth of July, and be well.

In community,
Margaret Cianci

Executive Director, EndoFound

Endo Tip of the Week:
Set Outcome Expectations

Lindsey Kaupp’s Wellness Workshop last week provided many easy-to-implement “hacks” for aligning your brain and body. One tip focused on outcome expectation. When you set your mind on the bodily outcome you want or expect to have, you’re more likely to receive it. For example, you’re more likely to get more sleep if you set your routine up to ensure that sleep is your first priority (and sleep is critical to individuals with persistent pain). We can make differences in our bodies and minds when we set that outcome. Lindsey also recommends watching this video on pain science to further understand how you can manage your pain expectation.

An endo warrior herself, author, screenwriter, and endometriosis educator Samantha Denäe set out to ensure that young people could get the information they needed about endo at an early age. Since 2019, she’s educated 559 young people in the Atlanta area. Last week, Samantha also teamed up with Lauren Kornegay, Kyla Canzater, and April Christina to launch 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. “For hundreds of years,” Samantha says, “people have believed that black people can withstand pain at a higher rate than other racial groups. Sure, everybody has different thresholds for pain, but just because I’m black doesn’t mean that I can bear pain for longer than somebody else.” Thank you, Samantha, for the critical work you do for the endo community.

We’re thrilled to welcome Melissa Boudreau to the new position of Marketing Director & Outreach Coordinator. Melissa is an endo patient who has already dedicated her time to helping others with endometriosis. Over the last several years, Melissa has volunteered as chairperson on EndoFound’s patient advisory board. She’s also held several annual fundraisers in Detroit for EndoFound, and she speaks regularly about the disease at conferences and on her podcast, The Cycle. Melissa has experienced a long and agonizing journey of being questioned, doubted, undiagnosed and misdiagnosed. Today, nearly three decades and six surgeries later, she is feeling better. Her goal now is to make sure that no other young person suffers through what she experienced and she’s already hard at work to ensure this mission with EndoFound. Welcome, Melissa!

Join Stephanie Christian on Wednesday, July 8th at 7 ET for our next Wellness Workshop: Long Distance Reiki. Stephanie is a Reiki practitioner and endo patient whose Long Distance Reiki work includes healing modalities such as breathwork, interactive visual meditation, sound (Zen Tubes), affirmations, essential oils, and chakra balancing. “Reiki is a very simple yet powerful technique primarily for stress reduction and relaxation,” Stephanie describes. “This class is great for anyone who wants to experience and receive Long Distance Reiki and see if it can promote feeling calmer, relaxed, optimistic, and empowered.” Registration is now open and the class will be held live on Zoom.

After years of debilitating cramps and misdiagnoses, Ashley Pratte was finally diagnosed with endometriosis and began her search for an endometriosis specialist. In this highly informative piece, Ashley shares the steps she took towards management as well as the experience of finding a specialist. Some recommendations for management? Heat wraps and symptom tracking through an app called Flutter, designed by EndoFound board member Kristy Curry specifically for endometriosis patients. It’s been five months since Ashley’s surgery, and she says, “While this surgery is not a cure, I feel much more in control of my own life and that is a huge relief.”

Teens are among the most vulnerable populations when it comes to endometriosis, understanding its symptoms, and getting a proper diagnosis. Endometriosis: A Guide for Girls is the second book from EndoFound co-founder and award-winning physician Dr. Tamer Seckin, with a foreword by Alaia Baldwin Aronow. Dr. Seckin believes that early diagnosis and intervention is the key to managing and treating endometriosis, which is why prioritizing endo education and treatment-seeking behavior in teens is of utmost importance. Order Endometriosis: A Guide for Girls today. 100% of royalties go towards funding the programs of the Endometriosis Foundation of America.

Prior to the pandemic, 1 in 5 women in the U.S. could not afford supplies for at least one month a year, and that number is increasing as a result of the ongoing pandemic. PeriodNow has been working with local agencies, food banks, and nonprofits in order to get period supplies to anyone who needs them in NYC while also educating about endometriosis. But we need your help to continue this critical mission. Step up with PeriodNow for period equity by becoming a sponsor or donating. Your donation will distribute menstrual hygiene products to those in need, and with a donation of $85 or more on our website we will send you the exclusive EndoFoundxDuvet Days Endometriosis Anatomy tote bag. Together let’s get those in need the essentials they deserve.

This week, EndoNews covered a commentary by Drs. Farland and Horne on the possible reasons for endometriosis diagnostic disparities among women of different ethnic and racial origins. There are distinct disparities in the diagnosis of endometriosis among women of different ethnic and racial origins. The article, published in the International Journal of Obstetrics and Gynaecology, discusses a study by researchers in Canada and the Philippines, which found that black women are less likely, and Asian women are more likely to be diagnosed with endometriosis compared to white women.

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.