New Endometriosis Tests Aim To Cut Diagnosis Delays

New tests for endometriosis are now available in some countries, aiming to address a diagnosis delay that can last a decade or more. The American College of Obstetricians and Gynecologists states that people often wait that long after symptoms begin for a formal diagnosis of the condition, which affects 1 in 10 women worldwide.

Endometriosis is a chronic inflammatory disease where tissue similar to the uterine lining grows on other body parts, such as the bladder, bowel, or ovaries. Symptoms include bloating, fatigue, infertility, and debilitating pain during periods, intercourse, or 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 of Mount Sinai West in New York City.

Why Diagnosis Takes So Long

Experts cite several reasons for the prolonged diagnostic journey. Patients and doctors often normalize period pain, and symptoms can overlap with other conditions. Not all healthcare providers have specific expertise in endometriosis, noted Dr. Megan Billow of the Cleveland Clinic. Dr. Or suggests patients keep a detailed pain diary tracking occurrence, location, and intensity to bring to appointments. "You can definitely ask: Do you think I have endometriosis?" she said.

New Tests Available Outside the U.S.

Two new diagnostic tests are in use internationally but lack FDA approval for the United States. A U.K. health institute has published draft guidance recommending both for use in the National Health Service for three years while more evidence is gathered.

Dr. Mark Noar, founder of Maryland-based EndoSure, said the company is submitting its application to the FDA. Meanwhile, the French company Ziwig is taking final steps to make its Endotest available to U.S. Patients through a pathway for lab-developed tests. Ziwig's Dr. Andrew Spiers called the diagnostic a starting point, not a replacement for other tools. "I would not say that it's the only tool that a patient would have in their diagnostic pathway," Spiers said.

Available Treatment Options

Once diagnosed, women can explore various treatments with their doctors. These include pain relievers like ibuprofen, prescription medicine for endometriosis, hormone therapies such as birth control pills and progestin, medications to temporarily stop periods, and surgical options including hysterectomy in severe cases.

Zoë Armstrong, 31, was diagnosed at 29 after an ultrasound found an endometrioma cyst. She underwent excision surgery to remove lesions and scar tissue. She now visits about three doctors weekly for pelvic floor therapy and educates students with the Endometriosis Foundation. "They need to know what to look out for -- not only for endo, but for other women's health conditions in general," Armstrong said. Dr. Or emphasizes that help and hope exist. "You don't have to live in pain," she said. "You can have a very, very good life managing this disease."