Endometriosis Foundation of America: ‚ÄčAn Online Patient Community
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Artwork: "Endometriosis Anatomy" by Jenna Wiebe of Duvet Days.
Towards Change & Actionable Support

Margaret Cianci

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As we all know too well, endometriosis is a difficult disease to diagnose and treat. The stigma surrounding menstrual periods and female pelvic pain persists throughout the U.S. and around the world. As we've been highlighting in our newsletters and on social media over the past couple weeks, roadblocks are multiplied for Black, Indigenous, and POC individuals who have endometriosis. The LGBTQIA endo community faces these barriers as well, and there is not nearly enough support, research, and advocacy in public health for them. We stand with our LGBTQIA community and are appalled by the latest rule passed by the administration that omits protection for trans patients seeking medical care.

It's past time that the medical community is inclusive at a root level and the disparities in healthcare and endo treatment that the LGBTQIA community and Black, Indigenous, and POC individuals face must change. In honor of this mission and Pride month, we are finalizing an LGBTQIA endometriosis resource hub for the EndoFound website. It will go live this month, and we encourage you to reach out to us with any suggestions for resources.

The past few months have been challenging, and we aim to both inspire our community towards lasting change and create actionable support at the same time. EndoFound's new project, PeriodNow: Because Periods Don't Stop for Pandemics, is bringing tampons and pads and endometriosis awareness to people in need in NYC. Last week we delivered our first donation of products to the Community Kitchen and Food Pantry in West Harlem with our newest partner, the Food Bank of New York City (FBNYC).

Yesterday we offered the first class in our new Wellness Workshop series: Mind, Body, and Soul. As we continue struggling with the COVID-19 pandemic, we aim to help those dealing with the stress and anxiety of delayed surgeries, rescheduled appointments, and increased pain and symptoms. From pilates and yoga to pelvic health and reiki, our Wellness Workshops are wide in variety and held live via Zoom. 

History has shown us, and indeed we have seen it in the past few weeks, that our united voices can facilitate change. We are continuing to work together to inspire each other in our EndoFound community so that individuals with endometriosis get the care they need.

In community, 
Margaret Cianci

margaret
Executive Director, EndoFound

PeriodNow at the Community Kitchen and Pantry in Harlem
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Recently PeriodNow received a $10,000 donation and two pallets of menstrual products from Key Food Supermarkets Inc. Last week, we delivered our first batch of products to the Community Kitchen and Pantry in West Harlem with our newest partner, the Food Bank of New York City (FBNYC). The products, along with informative postcards written in English and Spanish about endometriosis, were well received and much appreciated. Thank you to Rita, Sultana, and Analisse, with FBNYC, for all their help and support!

We look forward to delivering many more products. To learn more about PeriodNow, and how you can help, visit PeriodNow.org. Everyone deserves essentials. Period.

Join PeriodNow!
EndoFound’s Wellness Workshops
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Thank you for virtually coming together yesterday for EndoFound’s first Wellness Workshop: Mindful Vinyasa Yoga with Kym Klein. We hope you left the workshop feeling invigorated, empowered, and with a stronger capacity to bear stress. 

Our next Wellness Workshop will focus on pelvic pain and mental health. Join Lindsey Kaupp on Wednesday, June 24 at 7 pm ET for Taking Back Control from Endo: A Whole Person Approach to Pelvic Pain & Mental Health. This workshop is for women living with endometriosis or similar pelvic pain conditions where the pain is impacting your ability to live the life you desire. Lindsey, an occupational therapist who lived with painful sex for over a decade, will guide you through brain-based strategies to shift how your brain perceives pain and how emotion drives action. It was from Lindsay's personal experience and background in mental health and occupational therapy that she became involved in pelvic health. Lindsey will also share easy-to-implement “hacks” for aligning your brain and body. Registration is now open and the class will be held live on Zoom.

Register Today!

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

EndoNews: The Societal Toll of Health Inequities
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This week, EndoNews covered a research article by Dr. E. Albert Reece on the health disparities in the U.S. The article, published in Obstetrics and Gynecology News, highlights the gap between high-quality care and the people who need it most. 

Residents with lower-incomes are more in need of hospitalization for asthma, hypertension, heart disease, and diabetes. They also face infertility, preterm birth, and fetal death more often. In addition, reducing racial disparities in adverse pregnancy outcomes may generate health care cost savings of up to $214 million per year. "As obstetricians and gynecologists,” Dr. Reece writes, “we have a moral responsibility to reduce the burden of disease and poor pregnancy outcomes in our patients.”

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.

EndoFound’s Latest Board Member: Donna Kesselman
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Last month, we welcomed Donna Kesselman to EndoFound’s Board. Dr. Kesselman was 36 years old when she decided to become a doctor, and she opened her practice in New York City in 2001 with a specialty in pain management and palliative care before retiring five years ago. Dr. Kesselman was also an endo patient herself nearly 40 years ago.

“At that time, the medical community really didn’t really know what endometriosis was,”Dr. Kesselman says. “The doctor knew I had a cyst on my ovary, so he did surgery to remove it. When I woke up the next morning, he said he cut out the cyst but also removed (lesions) from my bladder and other places. I never questioned him, and I’ve been fine ever since.”

Dr. Kesselman expects her background and experience in the medical field and, specifically, in pain management, will enable her to effectively contribute to the EndoFound board. “I think the biggest thing I want to do is bring more awareness to endometriosis,” she said. “When I tell people that I’m involved with the board, many of them don’t even know what endometriosis is. I want women to know that if they are in severe pain, it is not how they should feel.”

Read more
Spotlight on Endo Advocates: EndoMego
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Meg O’Malley started making bracelets while waiting for excision surgery last summer. Meg had been struggling with abdominal cramps since she was 13, and when she first started getting her period in middle school, she would faint. Whenever she went to the hospital, they never knew what the problem was. The doctors would initially check for appendicitis and always end up finding “tiny cysts that should not be causing any pain,” according to the doctors. 

In September of 2018, Meg was hospitalized for an 8cm endometrioma that was causing torsion and cutting off the blood flow to her ovary.  At that point, Meg was told that her entire ovary needed to come out the next week. “I couldn’t believe,” Meg says, “that this thing that “shouldn’t have been causing pain all this time” turned out to be something extremely serious.  Endometriosis hadn’t been something that I had heard of, and it needs to be talked about.  It shouldn’t take 8-12 years to diagnose an illness that 1 in 10 women have.”

After her excision surgery, Meg decided to continue making bracelets and give back by opening her Etsy shop. “Twenty-five percent of each purchase is donated to the Endometriosis Foundation of America to help us find a better answer,” Meg says. 

Thank you, Meg, for your advocacy and for courageously sharing your story.

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Your Voice Makes a Difference
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There are an estimated 200 million endometriosis patients worldwide, and each endo story is as unique. 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. And by amplifying our voices and bravely sharing our stories, we can stop the silence surrounding endo and bring necessary change. 

Share Your Story!

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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