Julie Nash got her first period at 14. It was so painful that she vomited and spent hours in bed. More than a decade of similar symptoms later, she was finally diagnosed with endometriosis, a disease where tissue similar to the lining of the uterus takes root outside of the organ in the form of lesions and cysts. In recent years, Nash, now a 40-year-old real estate agent in Alvin, Texas, has suffered a bizarre list of additional symptoms—intense fatigue, constipation, the constant need to urinate, a burning sensation in her stomach, and pain in her hips, leg, and lower back—that didn’t seem related.
For several years, “I was living on the couch, doing the bare minimum for my kids, ready to check out of life,” she recalls. Taking continuous birth control pills helped, but Nash only put her symptoms in the rear-view mirror after a comprehensive surgery last year. The doctor removed lesions not just around her pelvis but also on parts of her colon, back muscles, gastric nerves, and other areas. “I didn’t realize all these other problems were from the endometriosis,” Nash says.
Primary care doctors, gynecologists, and even patients too often view endometriosis as a reproduction-related illness that warrants treatment primarily when someone wants to conceive, says Megan Wasson, a minimally invasive gynecologic surgeon (MIGS) at the Mayo Clinic in Phoenix, who treats endometriosis patients. But in the operating room, she has removed endometrial lesions from the lungs, bowels, spleen, and even the pericardial sac surrounding the heart.
“The inflammatory process that is endometriosis can truly affect every single organ system,” Wasson says. “It can cause a host of symptoms that can significantly impact quality of life and make people miserable.”
In the last year, studies have validated patient experiences, finding a shockingly long list of symptoms and medical conditions in some women and exploring some of the far-flung impacts of the disease. Researchers have also uncovered a growing array of molecular signals in blood and saliva. All of this may ultimately lead to earlier diagnosis and a wider range of treatments.