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.”
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Armstrong’s experience is not unusual. According to the American College of Obstetricians & Gynecologists, many individuals can wait a decade or more after the onset of symptoms to receive a diagnosis of endometriosis. This painful condition, which causes tissue similar to the lining of the uterus to grow on other parts of the body, affects approximately 1 in 10 women globally.
Emerging diagnostic tests being utilized in other countries aim to address this diagnostic delay. While these advancements raise hopes among healthcare providers and patients alike, they are not yet available in the United States. Experts predict these tests will be helpful tools but not comprehensive solutions.
Endometriosis can lead to debilitating pain and a variety of other symptoms. Research suggests that endometriosis may be a type of chronic inflammatory disease, although its exact cause remains unknown. Genetics is believed to play a significant role in its development.
The symptoms of endometriosis can vary based on the extent of the disease and the locations where the tissue appears. Typically, it is found on organs like the bladder, bowel, or ovaries, and in rare instances, it can extend beyond the pelvis. Common symptoms include bloating, fatigue, infertility, and most notably, pain that may occur during menstruation, 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,” explained Dr. Drorit Or, an expert at Mount Sinai West in New York.
Armstrong’s journey began at the age of 11 when she experienced stabbing pains on her left side, frequently visiting the school nurse for relief. As an adult, she faced severe pain, nausea, heavy periods, acne, and ruptured ovarian cysts. Shortly after getting married, she endured excruciating pain that felt like a tiny fencer stabbing her continuously for hours.
The delay in diagnosing endometriosis can be attributed to several factors. Patients and doctors often normalize period pain, while symptoms can overlap with other conditions. Not all healthcare providers possess the necessary knowledge or expertise regarding endometriosis, according to Dr. Megan Billow from the Cleveland Clinic.
To facilitate a diagnosis, Dr. Or recommends that patients keep a diary documenting when pain occurs, its location, and intensity. “Then when you come to the doctor, you come prepared,” she said. “You can definitely ask: Do you think I have endometriosis?”
New endometriosis tests are currently available in certain countries, but the U.S. Food and Drug Administration has not yet approved them. One promising option is EndoSure, a half-hour test that detects endometriosis by measuring electrical signals in the gut using sensor pads on the abdomen. Results are available to the physician immediately. Another test, Endotest, analyzes a saliva sample for microRNAs that may indicate the presence of the condition, with results typically delivered in two to three weeks.
In the UK, a health institute has recommended both tests for use by the National Health Service for three years while further evidence is collected regarding their efficacy. The goal is to expedite diagnosis in primary care settings.
Dr. Mark Noar, founder of Maryland-based EndoSure, announced that the company is in the process of submitting an application to the FDA, seeking approval for the test to assist doctors in making diagnoses. Meanwhile, the French company Ziwig is nearing the final stages of making Endotest accessible to U.S. patients through certified laboratories without requiring FDA approval. Dr. Andrew Spiers from Ziwig emphasizes that this diagnostic test serves as a starting point, suggesting that once a doctor confirms the presence of endometriosis, imaging may be necessary if it hasn’t been conducted already.
“I would not say that it’s the only tool that a patient would have in their diagnostic pathway,” Spiers noted.
While U.S. doctors agree that such tests could enhance the diagnostic process, they acknowledge that these tools will not resolve the ongoing issue of normalizing period pain.
With a confirmed diagnosis, women can collaborate with their healthcare providers to develop effective treatment plans. Options for managing endometriosis-related pain include over-the-counter pain relievers like ibuprofen, prescription medications specifically for endometriosis, hormone therapies such as birth control pills and progestin therapy, and surgical interventions, including hysterectomy in severe cases.
Armstrong underwent excision surgery to remove endometriosis lesions and scar tissue. She continues to see multiple doctors weekly for pelvic floor therapy and related issues. Additionally, she advocates for education on women’s health conditions by visiting middle and high schools across New York City with 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 emphasized.
Dr. Or encourages young women to understand that help is available and that living in pain is not a necessity. “You can have a very, very good life managing this disease,” she assured.
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