Endometriosis Is More Than Just ‘Painful Periods’ > News > Yale Medicine

Even though endometriosis affects an estimated 10% of reproductive-age women in the United States and can cause increasing, debilitating pain each menstrual cycle, as well as infertility, it is often misdiagnosed and misunderstood.

Part of the problem is that endometriosis is not a straightforward disease; researchers are learning how it can involve multiple organs and occur across the entire body. The disease gets its name from the endometrium, the lining of a woman’s uterus. In endometriosis, endometrial tissue grows outside the uterus—on the bowels and/or ovaries, as well as behind the uterus and elsewhere.

During a normal menstrual cycle, the endometrium thickens and is shed. With endometriosis, though, the tissue outside the uterus is shed into the abdomen. The shedding that occurs each month with menstruation causes pain, inflammation, and scar tissue, which is why the condition is often associated with painful periods.

“The degree of pain can be far worse than what any woman should expect with her monthly period, especially since it is a progressive disease, meaning that scar tissue accumulates and the pain worsens over time,” says Hugh Taylor, MD, chair of Yale Medicine Obstetrics, Gynecology & Reproductive Sciences. A leading endometriosis researcher, Dr. Taylor hopes that recent discoveries around the disease will make it easier to diagnose and treat.

“Endometriosis is a disease that is still under-recognized and under-treated—both by women suffering from it and health care providers,” Dr. Taylor says. “The first symptom of the condition often is painful periods. With pain in any other region of the body, doctors immediately investigate to find out what’s wrong; however, this is the only pain that the medical community considers ‘normal.’ Pain with menses is far too frequently dismissed. That attitude can leave patients questioning whether their pain is truly different—or worse—than someone else’s.”

Furthermore, many women, especially those who are younger, are reluctant to discuss other symptoms that can accompany endometriosis, such as pain with bowel movements or during intercourse, he adds.

“Statistics show that women will see four or five practitioners before they get the right diagnosis and that more than half are misdiagnosed initially,” Dr. Taylor says.

Below, we talked more with Dr. Taylor about endometriosis and ongoing research that holds promise for a better understanding and treatment of the disease.