Endometriosis Foundation of America: ‚ÄčAn Online Patient Community

Margaret Cianci

Dear %Subscriber:CustomField1%,

Our annual patient conference is only two weeks away! For the past few years, EndoFound’s patient conference has served as a time when the patient community can come together and seek answers across a wide array of topics relating to endometriosis. From extrapelvic endometriosis to mental health tactics to help you manage your pain, we’ve planned a full weekend of panels, talks, discussions, and more. 

The patient conference has also been a time for endo warriors to make lasting friendships. We’ve scheduled Slack chats, happy hours, and more ways that you can connect with new endo warriors. There has never been a more necessary time for this community to come together. I am in awe at your continued resilience—even in the face of cancelled surgeries, postponed treatment plans, and overwhelming anxiety and stress. 

The full schedule for the Virtual Patient Conference is now live on our website. You can register today for free. We can’t wait to see you there.

In community,


Margaret Caspler Cianci
Executive Director, EndoFound

Virtual Patient Conference 2020

Featuring inspiring and trailblazing leaders in endometriosis advocacy, this panel on endometriosis advocacy is sure to support you in living your best life with endo. How do you advocate for yourself with endo at work? In the doctor’s office? Among friends? Les Henderson, Lauren Kornegay, Samantha Denäe, and Kylie Gomez are here to help guide you in your journey.

Register today!
Facing Endometriosis During COVID-19: Catherine Vanacore’s Endo Story

Catherine, who spent years in pain from undiagnosed endometriosis, was finally given the chance for diagnostic surgery that would remove two cysts—and during the pandemic, no less. Despite her surgery being cancelled due to COVID-19, Catherine says it was a blessing in disguise because it allowed her to do critical research. “I realized that removing the cysts might not be the best option,” Catherine says. Because she was concerned with preserving her fertility, she found a new doctor, who developed an entirely different treatment plan: “We would do a diagnostic laparoscopy and if she found endometriosis she would excise it. She would leave the cysts to ensure that there would be no damage to my ovaries.”

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Endo 101: Post-menopausal Pain

Post-menopausal individuals can still experience endometriosis pain. “Post-menopausal women still make estrogen from peripheral fat,” Dr. Reich says, “in fact, remaining endometriosis makes its own estrogen. This estrogen drives a chronic inflammatory response from the endometriosis at the top of the vagina and anterior rectum, and the result is persistent pain.” Dr. Reich also notes the type of surgeries to avoid as well as his recommended treatment. Want to learn more about post-menopausal endo? Register for the Virtual Patient Conference to hear Dr. Rosanne Kho will speak on menopause & post-hysterectomy endo.

Ask Harry
Pain & Quality of Life Following Endometriosis Surgery

A recent study by Comptour et al., recently published in the Journal of Clinical Medicine, analyzed the individual long-term results following laparoscopic surgical treatment for endometriosis. Their goal? To determine whether some patients will receive better results following a laparoscopic surgery. “It remains difficult to accurately predict which patients will benefit from improvement in pain and quality of life. We have revealed, for the first time, clear trajectories for the progression of symptoms and quality of life after surgery that correspond to clusters of patients.”

Read More

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