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

Margaret Cianci

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Summer is upon us, and we're hoping you've been able to enjoy the warmth and sunshine while prioritizing your health.

June is Pride Month and an important time for us to evaluate our programs and support for the LGBTQIA endo community. There is a long history of anti-LGBTQIA bias in healthcare that continues to affect health-seeking behavior and access to care for LGBTQIA individuals.

As part of Pride Month, we are launching EndoFound's LGBTQIA Resource Hub, an evolving resource focused on LGBTQIA health, support groups, articles, videos, and more. We are reaching out to thought-leaders, as well, to mobilize our efforts for change. We will be announcing these partnerships and programs over the next months. 

Thank you to all of you who wrote to us, shared your stories, and helped us to frame a course for change. Keep those stories, emails, and posts coming! As we navigate these waters together, we will learn from each other. 

We also learn a lot from hearing each other's endo journeys. Please make sure to read Aditee's endo story this week, which eloquently and urgently describes her endo journey as a woman of color. "Endometriosis is a condition riddled with power struggles in the relationship between women and their doctors,” Aditee writes. “Since the belief in the theory of the 'wandering womb,' menstruation and its conditions have created a conspiracy of silence in healthcare.”

Each time you share your endo story, we break this conspiracy of silence and move a step closer to timely diagnosis, proper treatment, and one day, a cure.

Thank you, Aditee, for sharing your story.

In community, 
Margaret Cianci

Executive Director, EndoFound

Announcing EndoFound’s LGBTQIA Resource Hub for Endo Patients

The LGBTQIA community continues to face many health disparities due to bias in healthcare. The disparities include but are not limited to, higher rates of HIV, substance use, mental health issues, and lower rates of screening, such as mammography and Pap smears. The evidence shows that LGBTQIA individuals do not receive adequate healthcare services.

It is clear to EndoFound that society, health service providers, and healthcare professionals need to do better in meeting LGBTQIA health needs. Similar to the fact that there is a lack of training on endo in medical school, many medical professionals do not receive adequate training on LGBTQIA health, and as a result, are unable to meet the healthcare needs of the community.

At EndoFound, we will start by creating a safe and trusted space for the LGBTQIA endo community to get the information and resources they need concerning endometriosis. EndoFound’s LGBTQIA Resource Hub includes organizations focused on LGBTQIA health, support groups, articles, videos, and more. This resource hub is an ongoing project, and we will be adding to it consistently. If you have any suggestions or resources you’d like to share, please reach out at info@endofound.org.

EndoFound’s LGBTQIA Resource Hub
EndoFound’s Wellness Workshops

Thank you for virtually coming together yesterday for EndoFound’s second Wellness Workshop: Taking Back Control from Endo: A Whole Person Approach to Pelvic Pain & Mental Health with Lindsey Kaupp.

Our next Wellness Workshop is designed to physically put pressure on and relieve any "stuck" areas of the body with the help of tennis balls within specific yoga poses and flowing sequences. Join Paula Pavlova on Wednesday, July 1 at 7 pm ET for Unwind + Align: Yinyasa with Myofascial Release. An endo warrior herself, Paula has designed this workshop specifically for individuals with endometriosis. As Paula describes, “our bodies are calling out for a deep need to Unwind + Align and this practice relieves that built-up tension due to scar tissue, inflammation, or any spaces of disease in the body.”

You can expect to leave feeling completely renewed and recharged by your body's capacity to nourish and heal itself. “Our bodies remember absolutely everything that happens to us,” Paula writes. “It stores emotional, physical, and spiritual experiences in the very fibers of our being whether we like them or not.”

Registration is now open and the class will be held live on Zoom. Can't join this week? Be sure to put Stephanie Christian's Long Distance Reiki class in your schedule for the following week! 

Register Today!

If you know of a wellness professional who would be interested in leading a workshop, please reach out at wellnessworkshops@endofound.org

PeriodNow Updates

Last week Period Now: Because Periods Don't Stop for Pandemics made its first delivery of tampons and maxi pads and information on the symptoms of endometriosis at the Community Kitchen in West Harlem. Before COVID-19, nearly half of women (46%) could not afford to buy both food and menstrual hygiene products during the past year. Now, demand is critical for these products. EndoFound needs your help to ensure that period supplies are available to all women in areas hard hit by COVID-19. Period supplies are not a luxury. They are a need, and not having them threatens a person’s sense of self, dignity, and ability to participate in life. Follow the link below if you'd like to donate to PeriodNow. For corporate sponsorships, contact jeanne@endofound.org. We're all in this together. 

Join PeriodNow!
Remaining to be Seen: Aditee Kissoon’s Endo Story

Aditee Kissoon, who has fought an ongoing nine-year battle with endometriosis, writes about her experiences in and out of doctors offices, emergency rooms, and the racial and gendered bias within our healthcare system that contributes to further delays in endometriosis diagnosis for people of color.

“As a woman of color presenting pelvic pain in the emergency room,” Aditee writes, “I felt devalued by the health system. I was always met with doubt when describing the intensity of my pain. Given the severity of my discomfort, I would rate my pain 10/10 and was told by an ER nurse: “oh 10/10 would be like me stabbing you.” Sometimes my skin color and origins were questioned. I was told that “girls like me” are too sensitive and extreme when it comes to pain complaints by a consulting doctor in the ER who accused me of abusing the system.”

Since surgery confirmed her endo diagnosis, Aditee stood on a TEDx stage and shared her story. Watch her TED video here, and be sure to keep your eyes out for the graduate thesis she is writing on patient perspectives in endometriosis diagnosis in the United Kingdom.

Aditee’s Story

Consider sharing your story to EndoFound’s column, Endo Stories. By sharing your journey, you offer hope, strength, and support to so many other women who have endometriosis.

EndoNews: Racial Bias in Pain Assessment & Treatment Recommendations

This week, EndoNews covered a research article by Hoffmann et al. on racial bias in pain assessment and treatment recommendations. The article, published in Proceedings of the National Academy of Sciences, isthe first study to show evidence that false beliefs about biological differences and racial bias contribute to a disparity in pain perception and treatment recommendations.

The studies revealed that many white adults without medical training and many white medical students and residents endorse beliefs, “many of which are false and even fantastical in nature,” about biological differences, and these false beliefs are related to racial bias in pain perception. Participants who endorsed more false beliefs rated the black patients as feeling less pain than white patients.

The authors further noted that “future work will need to test whether white and nonwhite medical personnel in more advanced stages of their career also hold beliefs about biological differences between blacks and whites, and if so, whether these beliefs have consequences for pain assessment and treatment in real medical contexts."

EndoNews, EndoFound’s research portal, covers recent research from around the world on endometriosis. Because research articles are often protected by a paywall, EndoNews provides objective summaries of these articles in order to make this critical information more accessible. Given our mission to share the research articles that highlight the racial and ethnic disparities in endometriosis diagnosis and treatment, EndoNews will be covering one of these articles each week.

Read More

Subscribe to EndoNews for the latest in endometriosis research from around the world, and contribute to these researchers’ mission to improve the lives of endo patients by donating today.

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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