Successful endometriosis awareness campaigns are the key to beginning to control the disease, says Camran Nezhat, MD. Earlier diagnosis means a sooner return to a pain-free life for our patients.
On Thursday, March 13, 2014, women in dozens of cities throughout the world, including Washington, DC, will gather in support of a push for more public education and funding for women’s disorders that cause pain and infertility, including endometriosis, adenomyosis, and fibroids.
Thousands of women are expected to march in support of the cause, but this will still only be a fraction of the 176 million women and girls that reproductive health organizations estimate have endometriosis.
“Young girls and women across the world suffer from endometriosis, yet it is a condition that could be managed quite well,” said Camran Nezhat, MD, chair, AACF Stanford University School of Medicine, director, Center for Special Minimally Invasive and Robotic Surgery and Stanford clinical professor of obstetrics and gynecology, who is leading the effort. “It is high time that we try to make people become aware of this.”
Leading women’s health organizations and experts have come out in support of the march that will take place in cities in 39 countries, including Amsterdam, Belfast, Berlin, Brasilia, Buenos Aires, Copenhagen, Dublin, Helsinki, Kingston, Lisbon, London, Madrid, Osla, Reykjavik, Rome, Stockholm, and Valleta. In Washington, DC, the free events will take place around the Mall and are open to the public.
Since the launch of the Million Women March for Endometriosis, many major women’s health organizations have come out in support by offering co-sponsorship, including The American Society for Reproductive Medicine, The American Congress of Obstetricians and Gynecologists, and The Society of Laparoendoscopic Surgeons.
“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,” Linda Giudice, MD, President of ASRM said in prepared statement, “so women and their families can better manage their health.”
But the real drive behind the event comes from the more than 7,000 women worldwide who have been involved in preparing for the event. The Million Women March is a privately sponsored initiative that has seen an explosion in growth and participation through the power of word of mouth and social media.
Women have banded together on Facebook to create local teams who are planning to attend the march in 2014. These pages have also become a place for talking about this often taboo topic, with women sharing stories of their disease and their struggle to manage it. Unfortunately, it is clear from many of the Facebook posts that there are women who would like to participate but who know that their disease probably is going to prevent them from attending.
MARCHING WITH A GOAL
March advocates hope to raise awareness of these debilitating conditions affecting woman, but they also have more concrete goals.
First among them is the hope that more governmental funds and efforts can be directed towards common women’s diseases, such as endometriosis, fibroids, and chronic pelvic pain. A panel of experts will work with US governmental agencies, including the National Institutes of Health, the Centers for Disease Control and Prevention, and the Department of Health and Human Services, to try to achieve this goal.
Because these conditions start in women of reproductive age, the organizers also hope to get the Department of Education to begin nationwide health screenings for endometriosis and other chronic pelvic pain conditions. School screenings are an effective way to detect health problems that may interfere with a student’s education. Throughout the country, certain public school systems already require screening for vision, hearing, or height and weight to monitor for obesity, malnutrition, or eating disorders.
Increasing the awareness of this condition and the ability of healthcare professionals to correctly diagnose endometriosis is also a priority. Part of the difficulty surrounding diagnosis is the fact that symptoms described by women have for years been considered to be a normal part of being a woman.
“Young women go through puberty, and many experience a lot of pain,” Nezhat said. “It has become socially acceptable to have pain during your period, but there is no reason to put up with it because pain causes suffering.”
Nezhat admitted that even some of the most educated female gynecologists who train with him come to his practice thinking that this pain is normal.
“Unfortunately, when they come to the operating room, they do not even know what [endometriosis] looks like,” Nezhat said. “That means their teachers in the prestigious institutions where they graduated from don’t know what it looks like and are not teaching about it.”
SYMPTOMS AND DIAGNOSIS
Endometriosis can be a difficult condition for physicians to diagnosis, especially if they are not familiar with the condition. Symptoms vary from patient to patient and can include painful menses, pelvic pain and cramping, lower back or abdominal pain, pain during or after intercourse, pain with bowel movements or urination, heavy periods, infertility, fatigue, diarrhea, or constipation. Because of this wide variety of symptoms, the condition is sometimes initially misdiagnosed as irritable bowel syndrome or pelvic inflammatory disease.
Once endometriosis is suspected, the only confirmatory diagnosis is through laparoscopy. Research has shown that women and girls with endometriosis often had anywhere from a six- to 10-year delay from initial symptoms to diagnosis. Part of the delay is caused by patients waiting to seek help and part is from a delay in diagnosis from the physician.
“That could lead to 10 years of unnecessary suffering and during that time [the disease] could compromise the organs of many young women,” Nezhat said. “Many people do not know that this disease can affect every organ of the body, including the eyes, brain, lungs, bowels, bladder, blood vessels, nerves, and heart.”
Therefore, successful awareness campaigns about endometriosis are the key to beginning to control the disease. More awareness of symptoms among the public and medical community will eventually lead to more timely and accurate diagnoses, Nezhat said. The more quickly the disease can be diagnosed, the sooner these women and girls can return to a normal, pain-free life.
“It is important to emphasize that all of us have to get involved,” Nezhat said. “Just because it is a female health problem does not mean it is a female issue. It is a social issue for everyone, and enough is enough.”
Interested participants can sign up at www.millionwomanmarch2014.org/get-involved/ or join the Facebook campaign for the Million Woman March for Endometriosis 2014.