Earlier this year, the writer, actor and deliciously self-deprecating starlet Lena Dunham announced that health problems would prevent her from promoting her award-winning HBO series “Girls.”
“As many of you know I have endometriosis,” she wrote on Instagram (with the photo below). “I am currently going through a rough patch with the illness and my body (along with my amazing doctors) let me know, in no uncertain terms, that it’s time to rest.”
More recently, television host and cookbook author Padma Lakshmi cited her battle with endometriosis as “a major reason” her marriage to writer Salman Rushdie failed.
“Once diagnosed, I was relieved to know that I wasn’t crazy and that there was a reason for all this pain,” Lakshmi writes in the introduction of a new book by her doctor, Tamer Seckin, “The Doctor Will See You Now.” “Endo is not a life-threatening disease, but it does take away your life.”
Now, it turns out, new research suggests endometriosis, which afflicts about 10 percent of all reproductive-age women in the U.S., may be even more damaging than previously thought — indeed potentially life-threatening.
Doctors at Brigham and Women’s Hospital in Boston report that women with endometriosis — abnormal growth of uterine tissue outside of the uterus that can cause extreme pain and lead to infertility — have a 60 percent increased risk of coronary heart disease.
What’s more, the researchers found, the association between endometriosis and heart disease is strongest in women 40 or younger. Among them, there were 65 cases of heart disease per 100,000 women with endometriosis, compared with 19 cases in women without the condition.
“That’s a threefold increased risk” of having a heart attack, chest pain or requiring treatment for blocked arteries, said senior study author Stacey Missmer, director of Epidemiologic Research in Reproductive Medicine at Brigham and Women’s.
Many patients with endometriosis report that it can take years of suffering with the disorder before finally getting a proper diagnosis and adequate treatment. Even then, they say, their pain and distress is often minimized.
Linda Griffith, a professor at MIT and director of the institute’s Center for Gynepathology Research, said that even with growing awareness about the disorder, endometriosis isn’t always taken seriously. There’s still an attitude that endometriosis is “a women’s problem” she said, and that sufferers should simply “buck up” and deal with their “bad cramps.”
“To me, this study is a clarion call that we can’t just sit idly by,” said Griffith, who has undergone numerous surgeries for her own endometriosis. “This paper is important because the message is that women with this disease go on to have serious health problems, and their increased risk is high. …It should make people stop and think and stimulate more studies.”
So what’s the connection between endometriosis and heart disease?
Missmer, also scientific director at the Boston Center for Endometriosis, said that surgical treatment of endometriosis — that is, removal of the uterus or ovaries — can partially account for the link, since surgically induced menopause is already associated with a higher risk of heart disease. But, while about 40 percent of the increased risk can be attributed to the surgery, Missmer said, “the flip side of that is 60 percent can’t be explained by it.”
Her team offers several other potential explanations in the new report, published in a journal of the American Heart Association.
Missmer says previous studies established that women with endometriosis often have other problems — for example, systemic, chronic inflammation; increased oxidative stress (essentially difficulty detoxifying the harmful effect of free radicals in the body); and “poor lipid profile,” meaning high “bad” cholesterol and low “good” cholesterol.
Still, how all of that may lead to heart disease is not entirely clear. “All of these reproductive areas of research are chronically underfunded so studies are just starting out now,” Missmer said.
She added that there’s a kind of hierarchy of diseases, in which women’s and reproductive problems draw less interest and funding. “This publication around endometriosis and heart disease has had the most attention that our research team has had to date,” Missmer said, even after 20 years in the field. “There’s the belief you can die from heart disease, you don’t die from endometriosis … even though there can be years of suffering.”
Emily Hatch, a student from Wellesley, Massachusetts, was 13 and attending a Taylor Swift concert when she felt her first debilitating pain from endometriosis. She saw seven medical specialists before she was diagnosed with the condition, and ultimately underwent surgery.
Now a freshman in college, Emily “continues to have bouts of significant pain,” her mother, Mary Alice Hatch, told me in an email, with more surgery scheduled for next month. “It’s discouraging because she has been on a few medications to stop the endo progression but they don’t seem to be working,” she said. “There is not an easy solution to this disease.”
But there are things women and doctors should now be aware of, Missmer, the researcher, said. Typically, women with endometriosis focus on relieving their chronic pain and reducing the risk of infertility, but this study suggests they should focus on heart health as well.
“A very important message is for all women to recognize that heart disease is the leading cause of death for women in the U.S., and so women, regardless of their age, have to be concerned about symptoms of heart disease, focusing — even before the age of 40 — on healthy lifestyle choices, healthy diet, exercise and maintaining a healthy weight,” Missmer said.
The new analysis involved more than 115,000 women enrolled in the Nurses’ Health Study II. Endometriosis was diagnosed in nearly 12,000 of them by the end of the 20-year follow-up period. Researchers report no significant change due to some of the drugs women take to treat endometriosis, like oral contraceptives or various hormones, on the relationship between endometriosis and a higher risk of heart problems.