Lena Dunham’s Illness, Explained: Here’s What You Need to Know About Endometriosis

Girls returns to the air with its sixth and final season this Sunday. But the show’s creator, Lena Dunham, who rang in season four by posting a picture of herself and executive producer Jenni Konner re-enacting a NSFW sexual scene on Instagram, will be laying low this go-around: Dunham announced, also on Instagram, that she is not doing press on account of her endometriosis. “I am currently going through a rough patch with the illness and my body (along with amazing doctors) let me know, in no uncertain terms, that it is time to take a rest,” she wrote.

Dunham already published a detailed account of her chronic condition in her Lenny newsletter last November. In the essay, she describes debilitating stomach pain that occasioned ER visits and her missing 62 English classes in 10th grade.

Endometriosis, which affects 1 in 10 women of childbearing age, is a chronic disorder in which the tissue that lines the interior of the uterus spreads to other areas of the body. The displaced tissue, which can be called growth tumors, lesions, or nodules, can cause pain, diarrhea, heavy periods, spotting, fatigue, and even infertility.

The most common symptoms are pain and heavy periods. Doctors typically recommend painkillers such as Tylenol or Midol, and since the disease is stimulated by estrogen, hormone treatments are common as well. These include high doses of progesterone, medications that block estrogen, and the birth control pill.

The disease’s fertility implications are particularly worrisome. “Some women get severe scarring on their ovaries, some get cysts that rupture inside their ovaries, and sometimes the ovaries get embedded in the side of the abdomen—nowhere near the fallopian tubes—making fertilization impossible,” says Elizabeth Ginsburg, M.D., medical director of Assisted Reproductive Technologies at Brigham and Women’s Hospital in Boston. Removing the tissue surgically is an option—though this, too, can cause fertility problems. “Surgery to remove growths from the ovaries can also present problems. You’re cutting through ovarian tissue and damaging some of the eggs.” Many women who suffer from the disease therefore turn to IVF to get pregnant.

Researchers are currently working to determine the disease’s causes. Theories include the immune system’s failure to attack endometrial tissue that grows outside the uterus, as well as genetics. While women whose mother or sister has endometriosis are more likely to have endometriosis, no gene sequence has been discovered as yet.

For now, though, the mystery and misinformation surrounding a disease that affects 10 percent of women is unacceptable. “There is this continually perpetuated myth that severe pain is a normal part of the menstrual period,” says Carol Drury, associate director of the Endometriosis Association, an advocacy group based in Milwaukee. “If your pain can’t be relieved by a heating pad and ibuprofen, then you need to seek a diagnosis. The sooner you know, the sooner the treatment, and you could save your fertility.”

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