Endometriosis, a painful condition affecting 1 in 10 women worldwide, can often elude diagnosis for years, leaving patients suffering without answers. The disease involves tissue similar to the uterine lining growing outside the uterus, commonly on organs like the bladder, bowel, or ovaries, and in rare cases, beyond the pelvis. Symptoms can include bloating, fatigue, infertility, and most commonly, pain during menstruation, intercourse, and bowel movements, which can be debilitating.

Zoë Armstrong, 31, experienced severe symptoms starting at age 11, including stabbing pains, nausea, heavy periods, and ovarian cysts. After years of seeking medical help, she received a diagnosis of endometriosis at age 29, spurred by an ultrasound that revealed an endometrioma, a fluid-filled cyst. "To see it on paper, I was like, ‘I’m not crazy,’" Armstrong said, recalling the relief of finally having a name for her suffering.

Experts attribute the diagnostic delay to several factors. Patients and doctors may normalize menstrual pain, and symptoms can overlap with other conditions. Additionally, not all healthcare providers possess specialized knowledge of endometriosis, according to Dr. Megan Billow at the Cleveland Clinic.

To help patients, Dr. Drorit Or at Mount Sinai West suggests keeping a detailed pain diary, tracking its occurrence, location, and intensity. "Then when you come to the doctor, you come prepared," Or said. "You can definitely ask: Do you think I have endometriosis?"

Advances in Diagnosis

New diagnostic tests are emerging in other countries, offering potential to speed up the identification of endometriosis, though they are not yet approved by the U.S. Food and Drug Administration. One such test, EndoSure, takes about 30 minutes and measures electrical signals in the gut using sensor pads on the abdomen. Another test, Endotest, analyzes a saliva sample for microRNAs indicative of the condition, with results typically available within two to three weeks.

In the United Kingdom, draft guidance from a national health advice institute has recommended the use of both EndoSure and Endotest by the National Health Service for a three-year period to gather more evidence on their effectiveness in primary care settings.

Dr. Mark Noar, founder of EndoSure, stated that the company is seeking FDA approval in the U.S. for its test to assist physicians in diagnosis. Meanwhile, the French company Ziwig is preparing to make its Endotest available to U.S. patients through a pathway for lab-developed tests, bypassing the need for FDA approval.

"I would not say that it’s the only tool that a patient would have in their diagnostic pathway," said Dr. Andrew Spiers of Ziwig, emphasizing that these tests are a starting point. U.S. doctors generally agree that while these novel tests could be valuable additions to existing diagnostic methods, they are unlikely to replace them entirely and do not address the fundamental issue of normalizing period pain.

Managing Endometriosis

Once diagnosed, treatment plans can be developed. Options include pain relievers like ibuprofen, prescription medications specifically for endometriosis, hormone therapies such as birth control pills or GnRH agonists, and in severe cases, surgical interventions including hysterectomy. Armstrong underwent excision surgery to remove endometriosis lesions and scar tissue, and continues to manage her health with pelvic floor therapy and other medical support.

Armstrong is also involved in educating students about endometriosis and other women's health conditions through the Endometriosis Foundation. "They need to know what to look out for — not just for endo, but for other women’s health conditions in general," she said.

Or stressed that help and hope are available, stating, "You don’t have to live in pain. You can have a very, very good life managing this disease."