This year, Endometriosis Month will begin with an internationally coordinated campaign and continue with a March that will occur worldwide on Thursday, March 13, 2014, in dozens of international capitals, as well as on the Mall in Washington.
Approximately 7,000 women worldwide have been involved in preparing for the “Million Women March,” which began on Facebook and whose numbers have been growing steadily since the campaign started about six months ago. An estimated 176 million women and girls have endometriosis, according to several different reproductive health organizations.
“Women who suffer from endometriosis wait on average more than six years before receiving an accurate diagnosis – that’s why the American Society of Reproductive Medicine is an advocate for the Million Women March,” says Dr. Linda Giudice, president of ASRM, “so women and their families can better manage their health.”
The March will include awareness campaigns in Amsterdam, Belfast, Berlin, Brasilia, Buenos Aires, Copenhagen, Dublin, Helsinki, Kingston, Lisbon, London, Madrid, Oslo, Reykjavik, Rome, Stockholm, Valleta, and Washington, D.C., with the largest gathering in the U.S.
“As a society, we need to take a hard look at the system and the way that economic forces are affecting both medicine and feminine diseases," says Dr. Camran Nezhat, chair, AACF Stanford University School of Medicine, director, Center for Special Minimally Invasive and Robotic Surgery and Stanford clinical professor of OBGYN, who is leading the effort. "The trend toward rationed medicine is making it difficult for medical providers to take the time to listen to the patient with ambiguous symptom profiles, instead of examining patients in a holistic way that ensures a good quality visit in the exam room.”
In addition to the broad goal of simply raising awareness, organizers will be seeking change in the following four sectors:
1) Government-Funded Health Organizations
A panel of experts will work with U.S. governmental agencies: The National Institutes of Health (NIH), Centers for Disease Control (CDC), the Department of Health and Human Services (HHS), and the office of the Surgeon General – to redirect funds and efforts to focus on common women’s diseases such as endometriosis, fibroids, and chronic pelvic pain so that resources are visible to the public.
2) Health Screening in Public Schools
As is done with scoliosis, hearing, vision and now diabetes, involve the Department of Education in nationwide health screenings in public schools to test for endometriosis and other chronic pelvic pain conditions that afflict girls.
3) Medical and Nursing School Educational Institutes
According to leading reproductive health organizations, even after numerous visits to their pediatricians, primary care physicians, gynecologists, school nurses, and emergency room practitioners, millions of women and girls with endometriosis, fibroids, and chronic pelvic pain are still undiagnosed for several years or are receiving grossly inadequate care.
4) Public Education Campaigns
Researchers, medical professionals and everyday women will continue to spread awareness in the media and in our local communities, making requests to private foundations to consider supporting research and outreach so that a cure can be found and noninvasive screening tests can be developed.
Participants can sign up at http://www.millionwomanmarch2014.org/get-involved/ and join the Facebook campaign at https://www.facebook.com/groups/130895160440864/.The program will consist of events around the Mall in Washington, as well as coordinated events in foreign cities on the same day. Thirty-nine countries are represented so far, with roughly 7,000 registrants to date. The display and programs are free and open to the public and will be held at the National Mall, which is fully accessible.
“I support this campaign because it is critical for women to know that their pain is real and that there are resources for them,” says Katherine Lane, who has had endometriosis for – years. The march signals a new era for women who will be heard and for doctors who want to heal them.”
Studies carried out in the USA, the UK and Australia demonstrate that the difficulty in timely diagnosis of endometriosis is universal. The delay in diagnosis was recorded as 9.28 years in the North American Endometriosis Association Survey (NAEAS) of 4000 members; this includes a delay in the patient seeking help from a physician for an average 4.67 years and a delay of 4.61 years in the physician making the diagnosis of endometriosis.
“We are looking forward to this march on Washington,” says Dr. Robert Zurawin, associate professor, Division of Gynecology, Baylor College of Medicine. “Because people need to be aware of these ‘invisible illnesses’ and how much they affect society, not only women.”
“The best medicine in the world is not an app or a new piece of technology,” adds Nezhat. “It is simply taking the time to listen to the patient and believe her—just like Hippocratic physicians did 2500 years ago.”