As young girls, we are taught that cramps are a regular part of our life. We all get them. We all struggle. But for some of us – far more than we may know — those abdominal aches reach a higher level of pain than is healthy. These women suffer from endometriosis.
As defined by The Mayo Clinic, endometriosis is “an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis.”
Symptoms include debilitating pain, infertility, mood swings, painful sex — all which can interfere with daily life. Even more horrifying, endometriosis affects 1 in every 10 women in the United States, andcosts the United States an estimated $119 billion annually. As researchers for Oxford Journals’ Human Reproduction Update explain, “Endometriosis imposes a substantial economic burden on society, mainly related to productivity loss.”
According to one study, endometriosis forces women to lose, on average, 10 hours of work per week to rest and see doctors. These women are often misdiagnosed, resulting in delayed treatment and unnecessary discomfort.
And what’s worse is that many women suffer in silence, unaware that they even have the disease.
“So many women are unhappy. They lose work time; they lose productivity; they lose their jobs because of this disease,” gynecologist and endometriosis surgeon Dr. Tamer Seckin told CNBC. “They shouldn’t be discriminated because they have this condition.”
Lena Dunham has bravely written about her struggles with endometriosis, describing the horrific experience of not knowing what was wrong with her for over a decade. She recently spoke about her troubles at the Endometriosis Foundation of America‘s Blossom Ball:
“While endometriosis affects 1 out of every 10 women, only a fraction of those cases will ever be diagnosed. Many will be dismissed as having mere menstrual pain or, worse yet, some modern version of hysteria.”
Celebrities such as Susan Sarandon, Padma Lakshmi, and Whoopi Goldberg have joined Dunham to speak out about their struggles with the disease, spreading awareness and helping sufferers realize they are not alone. In one speech for the Endometriosis Foundation of America, Sarandon addressed the men in the room whose partners suffer the disease:
“Suffering should not define you as a woman! Just because you’re a man it doesn’t mean that it doesn’t affect you! Help her to remove the taboos and the loneliness surrounding this disease; be understanding, show empathy, and don’t accuse her of being sensitive, delicate, or overly dramatic – this is a big opportunity for you guys to show that you care and to be a real man!”
This is a disease that needs our attention: Women who suffer endometriosis have a higher likelihood of getting ovarian cancer and heart disease.
“It’s one of those things that women don’t talk about, and so anything you can do to help them come forward and find out and get diagnosed and get treatment before it turns into something really horrible I think is really important,” Susan Sarandon added.
You can view more of Sarandon’s speech here:
Lakshmi concurred, adding: “If I had been diagnosed at 16 or 26 or even 32, I would have gained valuable time. I would have been able to be more present for my family and friends … [had] a greater capacity to advance professionally, and I would have also had a greater capacity for intimacy.” Lakshmi has been very honest with her feelings that her battle with Endometriosis caused the dissolution of her marriage to Salman Rushdie. “Endometriosis was definitely a major reason that my marriage failed and I don’t think either of us understood it at the time. I think that’s also because I hid it to a certain degree, not intentionally but you know, it’s weird to talk about your period all the time. It’s like the least sexy thing in the world to do.”
Indeed, social epidemiologist Jhumka Gupta claims the same societal attitudes that dismiss and stigmatize other important public health issues faced by women, such as sexual assault or postpartum depression also are at play when it comes to discussing endometriosis:
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.
“Discussions about ‘Leaning In’ tend to focus on women, self-confidence and career challenges women may face once they become parents. However, these high-profile discussions rarely ever include career challenges faced by women who have debilitating health issues that are linked — scientifically, medically or otherwise — in the public’s mind to a ‘woman’s problem’ such as menstruation. No one wants to let you take time off because of what they perceive as just a bad period.”
Hopefully, with the encouragement of the courageous women who speak up about the disease, sufferers won’t be afraid to speak out regarding their own struggles, and will seek the medical attention and help they need. It is up to those of us who do not suffer endometriosis to understand, and never, ever judge.