Endometriosis Is a Social Justice Issue

10/21/2014 03:24 pm ET Updated Dec 21, 2014

When Arielle* reflects on her teen years, she remembers loving school, but also the dread of knowing she would miss 2-3 days every month and feel like an outcast for that very reason. In some parts of the developing world, young girls miss 8-24 days of school due to menstruation, largely due to societal norms that stigmatize menstruation and lack of access to sanitary napkins. But Arielle grew up in New Jersey, and she missed so much school because she suffers from endometriosis.

Endometriosis is a debilitating chronic illness estimated to affect 5 million women in the United States alone. It occurs when cells similar to the lining of a woman's uterus exist in other parts of her body. These misplaced cells bleed, cause inflammation, and can bind organs together. While "killer menstrual cramps" are the most common symptom, the disease can wreak havoc on other areas of the body including the intestines, diaphragm, nerves and lungs. Endometriosis can lead to debilitating knife-like pain, organ dysfunction, pregnancy complications, and infertility.

Sadly, in contrast to its high prevalence, widespread public awareness and advocacy for endometriosis is close to non-existent. Even leading advocates in women's reproductive health like Byllye Avery, founder of the National Black Women's Health Project and McArthur Genius Award recipient, are dismayed to only recently learn of the devastating impacts of endometriosis. Misinformation regarding endometriosis, on the other hand, looms large. In the U.S., women and girls who suffer from endometriosis symptoms experience deep-seated stigma and are wrongfully accused by both their support networks and the medical establishment as being attention-seeking, lazy, promiscuous, or crazy. On average, women in the U.S. see 5 physicians and wait 8-11 years before being diagnosed. That means a 14-year-old girl with symptoms may not even have a name for the cause of her pain until she is well into her twenties.

Why is it so difficult for doctors to diagnose? There are no biomarkers or imaging tests to detect and monitor the disease. The only definitive way to be diagnosed is through surgery. For many other diseases, being able to put a name to the suffering is part of a relatively short process which opens up the door to well-established treatment regimens and support networks. However, when the diagnosis is endometriosis, another vortex begins. A woman has to be able to access one of the estimated 20 surgeons in the United States with expertise in deep excision surgery, and even this approach has its limitations. Instead, most women and girls are stuck with physicians who address the disease through sub-optimal, incomplete surgical approaches, or use hormones to create a pseudo-menopause state.

Worse, it is not uncommon for physicians to irresponsibly recommend the removal of reproductive organs (such as ovaries or the uterus), or even recommend pregnancy to young women under the ill-informed belief that such measures will be curative.

The ramifications of endometriosis extend beyond debilitating pain women. In the U.S., endometriosis-associated work absenteeism can cost a woman $230 in earnings every week. Globally, studies document that women with endometriosis lose 10 hours of productivity every week. That is one work week per month, and 12 weeks of productivity in one year. This turmoil during a woman's reproductive years coincides with when she is trying to finish school or build up her career. Yet, these struggles rarely make it to discussions about "leaning in".

How can we better educate the public and the medical community? It needs to be seen as a reproductive health and social justice issue.

Endometriosis is virtually absent from current reproductive health advocacy platforms. The only time it is mentioned is usually as a political football in the birth control pill debate between reproductive health advocates and conservatives. With the best of intentions, reproductive health advocates often obfuscate the actual benefits of birth control pills (BCPs) claiming that they can help treat endometriosis. But BCPs do not treat the disease. They can help with some pain, but only temporarily, and BCPs don't address other consequences of endometriosis. In fact, a recent study indicated that women with the most severe forms of endometriosis (deep infiltrating endometriosis) as adults were prescribed BCPs during adolescence. BCPs can delay the diagnosis of endometriosis, mask its symptoms, and prolong the suffering of women and girls with the disease.

Some may view this perspective as an affront to feminism or threatening women and girls' rights to access BCPs. Nothing could be farther from the truth. Rather, the plight of women and girls with endometriosis highlights how reproductive rights advocates must educate themselves about endometriosis, and treatment methods beyond the bandaid solution of BCPs. Only then can they begin to demand change and help women and girls with this disease.

One of the first steps towards this is to destigmatize diseases that are linked, scientifically, medically or otherwise in the public's mind to a "woman's problem" such as menstruation. Women's rights advocates have fought hard to ensure that women are viewed as more than their periods, and that hormonal differences between men and women should not impact women's ability to be treated with equality in societal and professional spheres. This is certainly true, but we may also have unintentionally taken away the space for advocacy around endometriosis by sending a message to women and girls that it is a sign of weakness to miss school or work because of an illness associated with menstruation. In the fight to eliminate differences because of menstruation, the unintended message for women and girls with endometriosis is "suck it up, we all have periods." We have shied away from acknowledging and advocating for endometriosis.

We also need large-scale campaigns for women, girls, their families and broader support networks, as well as physicians to be able to decipher what are "normal cramps", and what are actual signs of the disease. Efforts are underway by the Endometriosis Foundation of America to conduct outreach to young girls and school nurses in the state of New York. The first-ever Million Woman March for Endometriosis was held in Washington, DC and other countries earlier in 2014. These movements need to be embraced by the broader reproductive health advocacy communities to impact widespread change. Earlier this month, on October 11th, the US commemorated the International Day of the Girl, a UN declared day whose mission is "to help galvanize worldwide enthusiasm for goals to better girls' lives, providing an opportunity for them to show leadership and reach their full potential." With missed school, lost wages, and social isolation, endometriosis systematically keeps girls from reaching their full potential and thus needs to be integrated into these larger social justice movements.

Once there is greater awareness, we can work towards developing effective treatment. No young woman should have to worry about missing school or missing out on life because she is suffering silently from endometriosis. These women need a voice in women's health and more broadly, social justice, so that ultimately they can speak out about their suffering and know they will be helped instead of dismissed or, worse, ostracized.

* Arielle D. Dance, MAWH, PhD Student is a women's health researcher. She currently is a coordinator at the American Cancer Society and is pursuing a doctorate in Mind Body Medicine.

More information on endometriosis can be found at www.endofound.org and www.endocenter.org