Endometriosis can elude diagnosis for years. What to know about the disease and new ways to find it

When Zoë Armstrong got an ultrasound report showing signs of endometriosis, she called her mom and cried. After years of suffering and seeking help from doctors, she finally had an answer. “To see it on paper, I was like, ‘I’m not crazy,’” the 31-year-old recalled.

“I very much knew what I was feeling in my own body.” Armstrong’s experience is not unusual. The American College of Obstetricians & Gynecologists says people can wait a decade or more after the onset of symptoms to receive a diagnosis of endometriosis. The painful condition, which causes tissue similar to the lining of the uterus to grow on other parts of the body, afflicts 1 in 10 women worldwide.

New tests being used in other countries aim to help address the issue. And while they’re raising hopes among doctors and patients, they’re not currently available in the U.S., and some experts expect them to be a useful tool but not a complete solution. Endometriosis can cause debilitating pain Research suggests endometriosis is a type of chronic inflammatory disease.

The exact cause is unknown, although experts say genetics plays a part. Symptoms vary depending on the extent of the disease and where the tissue appears. Usually, it’s found on organs such as the bladder, bowel or ovaries, but in rare cases it can even be outside the pelvis.

Symptoms may include bloating, fatigue and infertility – and most commonly pain that can strike during periods, intercourse and bowel movements. “It can be debilitating pain that makes you not be able to go to school or work or be in bed for days at a time,” said Dr. Drorit Or at Mount Sinai West in New York.

Armstrong’s first symptoms, at age 11, were stabbing pains on her left side that repeatedly sent her to the school nurse. As an adult, she was also wracked with severe pain as well as nausea, heavy periods, acne and rupturing ovarian cysts. Shortly after getting married a couple of years ago, she experienced pain she likened to having a tiny fencer inside her “just stabbing me incessantly for hours at a time.” There are many reasons for a delayed diagnosis Armstrong was finally diagnosed at 29 by a doctor who also had the disease.