Endometriosis, or “endo” for short, is a condition that happens when tissue similar to the lining of a woman’s uterus (womb) grows outside of the uterus, according to the Office on Women’s Health. It can cause painful periods, pain during sex, irregular bleeding, digestive problems, infertility, and other symptoms, notes the Mayo Clinic.
Endometriosis affects about 200 million women worldwide and about 1 out of every 10 women in the United States. Yet the disease is often misdiagnosed or missed altogether, says the Endometriosis Foundation of America (EndoFound). Lack of education and awareness is a big reason endometriosis goes undetected.
Endo Awareness Has Improved in Recent Years
“Awareness is everything,” says Tamer Seckin, MD, an endometriosis excision specialist, cofounder of EndoFound, and member of Everyday Health’s Wellness Advisory Board. “In the ’90s, when I first began seeing patients, I realized that the pain that women experience during their periods was not believed in by doctors or loved ones. When I realized that the disease endometriosis was the reason behind these symptoms, I found a complete lack of information about it.”
While more people know about the condition today, there’s still a significant demand for greater understanding, especially when it comes to diagnosis and treatment options.
“With timely intervention and early detection, patients can have a chance at attempting to manage their symptoms before turning to surgery,” Dr. Seckin says. “Timely intervention means a patient has enough time to try to manage their symptoms and know what’s going on in their body, as opposed to the all-too-common horror stories of a patient being diagnosed with endo — or not diagnosed at all — and their doctor right away telling them that a hysterectomy is the only course of treatment.”
Endometriosis Awareness Days and Months
From fundraisers to marches, there are plenty of events to participate in during Endo Awareness Month.
March Is Endometriosis Awareness Month
The Endometriosis Association began Endometriosis Awareness Month in 1993. It’s now observed worldwide through activities such as education, fundraising, and marches. To honor Endometriosis Awareness Month, the organization provides free, worldwide distribution of popular yellow ribbons and brochures.
While the COVID-19 pandemic has altered the format of the usual activities, EndoFound is planning to hold several virtual events in March 2021, including:
- The Mind, Body, Soul Wellness Challenge is planned for March 1 through 14. This challenge involves completing daily wellness activities, such as exercising, journaling, meditating, and volunteering, to earn points and spread awareness about endometriosis. You can track your progress on a live leaderboard, and prizes are given to the top scorers.
- The Video Awareness Campaign provides a platform to share your story and help squash the stigma of endometriosis. This campaign will feature celebrity Olivia Culpo and runs from March 15 through 31, 2021.
- The Global Endo24 Virtual Medical Conference is a 24-hour event that’s designed for patients with endometriosis in partnership with the International Society for Gynecologic Endoscopy. It’s scheduled for March 20 through 21, 2021.
- The International Patient Conference 2021 will take place on March 19 and 21. This patient-centered, virtual meeting will equip patients with the tools and information they need to live their best lives with endometriosis.
Annual Community Walks, Runs in Support of Endometriosis
Participating in a walk or run to support endometriosis could help you stay in shape and raise awareness at the same time.
Due to the COVID-19 pandemic, many of the annual, in-person activities, such as the TCS New York City Marathon, Rock ‘n’ Roll Race Events, and EndoMarch, have been cancelled, postponed, or revamped as virtual events.
Conferences and Meetings on Endometriosis
Medical conferences provide an opportunity for researchers and scientists from around the world to meet and discuss cutting-edge treatments and the latest in patient care.
The Endometriosis Summit
The Endometriosis Summit will be a virtual event, taking place March 5 through 7, 2021. The goal of this three-day conference is to unite the endometriosis community as one. Surgeons, patients, and practitioners can attend online from anywhere in the world.
Society for Endometriosis and Uterine Disorders (SEUD) Congress
The 7th SEUD Congress is schedule for December 8 through 11, 2021, in Stockholm. It’s planned as a hybrid event, which will include face-to-face interaction as well as online sessions. The program includes live surgeries, educational sessions, and symposiums.
14th World Congress on Endometriosis
The World Endometriosis Society hosts this international conference that will take place virtually March 6 through 10, 2021. The aim of the meeting is to advance clinical care and research while improving the lives of all affected women with endometriosis and adenomyosis.
Volunteering or Fundraising
Many organizations offer volunteer opportunities for people who want to spread the word about endometriosis.
EndoFound has a page on their site where you can sign up to host a fundraiser, run a race, or participate in another type of awareness project.
How to Spread Awareness About Endometriosis
Increasing awareness about endometriosis starts with you.
“The best way to spread the word about the disease is, in general, to talk about it,” says Seckin. “The time for stigma and taboo concerning menstruation is over. We need to come together and discuss women’s health openly, because a painful period is not normal, and the sooner we shed this stigma, the sooner an endo patient can receive the treatment and support she deserves.”
Sharing on Social Media
If you can’t attend a conference or volunteer, social media might be a good way to spread awareness about endometriosis and connect with others.
Most of the large resources, such as Endometriosis.org, the Endometriosis Association, Endometriosis Research Center, and Endopaedia have an active presence on Facebook. Another private group, Nancy’s Nook Endometriosis Education, has a sizeable following.
There are also several communities on Twitter, including:
Additionally, you might be able to find local groups in your area via social media by doing a simple search.
#UpEndo and the House Endometriosis Caucus
In early March 2020, Iowa congresswoman Abby Finkenauer launched the House Endometriosis Caucus to increase education and to raise Congressional funding. The Endometriosis Foundation also created a petition to help support the bipartisan caucus to raise Congressional funding for research. Representative Finkenauer and EndoFound used the Twitter hashtag #upendo to invite Americans to join the movement to up endo awareness, up endo funding, and up endo research.
“Endometriosis is under-researched and suffers from a lack of proven and effective treatments,” said Finkenauer in a statement released by her office. “Doubling research funding will provide critical additional capacity for studying endometriosis, developing effective treatments and improving the quality of life for millions and millions of women. This is a game-changer.”
Becoming an endometriosis advocate is an opportunity for you to use your voice to help promote policies that could benefit other women. One way to make a difference is to join organizations in participating in their advocacy campaigns, which often prove successful.
“In 2019, after a two-year advocacy initiative with New York State elected officials, EndoFound succeeded in passing the first legislation in the country to address endometriosis,” says Seckin. “Now, New York State will call for materials on endometriosis to be available to school districts and medical professionals across the state.”
Share Your Story and Tips About Living With Endometriosis
You can help others learn about endometriosis and understand your medical journey by starting your own blog or sharing your story online.
Submit Your Stories
Submitting Tips for Living with Endometriosis
Visit Tippi Endometriosis, where you can submit and get advice about living with endo.
Getting Involved in Research Studies and Clinical Trials for Endometriosis
Clinical trials help researchers identify effective and safe treatments for different conditions. By participating in a study, you might receive a therapy that isn’t yet available to the public. Volunteering also paves the way for innovative treatments and could help women in the future.
This year, the ROSE (Research OutSmarts Endometriosis) study, an initiative to examine potential causes, diagnostic options, and new treatments, is enrolling women with endometriosis and those without the condition to serve as part of a control group.
Sharing Resources to Help People With Endometriosis
There are many online resources and support groups to help women with endometriosis learn more about their disease, find out about awareness opportunities, and become inspired by others’ experiences.
“Patients need to be listened to, and their medical history needs to be meticulously taken,” says Seckin. “This is of extreme importance.” In general, when looking for information about endometriosis, look for places that emphasize this.
Related: Endometriosis Resource Center
Some popular go-to resources for endometriosis support include:
The bottom line when it comes to endometriosis awareness? We’ve come a long way, but more outreach is needed.
“There is not enough awareness,” concludes Seckin. “The taboo surrounding menstruation delayed the recognition of this disease, and we still have more work to do in breaking down stigmas concerning women’s health.”
Article by: https://www.everydayhealth.com/endometriosis/awareness-month/
image credit from https://whcresearch.com/2019/03/18/endometriosis-awareness-month/ (admin)