Susan Sarandon, Whoopi Goldberg, Padma Lakshmi, and another 176 million women suffer from an often painful, debilitating disease that few people have heard of—including primary care doctors. It's estimated that one woman in 10 of reproductive age have endometriosis, a disease that occurs when tissue similar to the lining of the womb is found elsewhere in the body—like in the abdomen, ovaries, bladder, and bowel—and bleeds every month, reports the Guardian. Though some have no symptoms, others complain of pain so severe that they pass out. It isn't just physically painful: Women report the disease can ruin relationships because sex is painful; cause them to lose their jobs at a cost of $80.4 billion a year in the US, where 7.6 million women are affected; and may be responsible for almost half of all unexplained infertility, according to a 2008 study. Charity Endometriosis UK says a survey of its members showed 25% had felt suicidal because of the disease.
Even getting a diagnosis is difficult. Doctors are often unaware of the disease, while specialists are often ill-informed. That means women can suffer for years before the disease is confirmed through a laparoscopy, a keyhole surgery. One woman who's had endometriosis since age 11 says doctors initially ignored her complaints, getting a diagnosis took a decade, and now, at 33, she's still struggling to find the right treatment. While some women take painkillers, some "do very well with very good surgery, but unfortunately that surgery is as specialized as cancer surgery," or moreso, says an expert. Researchers are investigating the genome of women with the disease and say about 50% of endometriosis is inherited, but funding is "a major scandal," the expert adds. Less than $1 per patient goes toward endometriosis research in the US each year. (Another study finds that women may be more vulnerable to Alzheimer's.)