Zoë Armstrong, upon receiving an ultrasound report indicating signs of endometriosis, was overwhelmed with emotion. After years of battling debilitating symptoms and searching for medical answers, she felt a sense of validation. "To see it on paper, I was like, ‘I’m not crazy,’" said the 31-year-old, emphasizing her intuitive understanding of her own body’s pain.
Armstrong's struggles are emblematic of a widespread issue: according to the American College of Obstetricians & Gynecologists, many individuals experience delays of ten years or more before receiving a diagnosis of endometriosis. This painful condition, which causes tissue similar to the lining of the uterus to grow outside its typical location, affects approximately 1 in 10 women globally.
New diagnostic tests being implemented in several countries aim to alleviate this diagnosis delay. While these advancements spark hope among healthcare providers and patients, they remain unavailable in the U.S. Experts suggest these tests could enhance diagnostic efficiency but are not expected to serve as standalone solutions.
Endometriosis can cause debilitating pain
Research characterizes endometriosis as a chronic inflammatory disease, though its root cause remains largely unknown, with genetics identified as a contributing factor. Symptoms diverge based on the disease's severity and the affected areas, typically manifesting on organs like the bladder, bowel, or ovaries, and in less common cases, outside the pelvic region. Patients may experience a range of symptoms including bloating, fatigue, infertility, and, most notably, severe pain during menstruation, intercourse, and bowel movements.
Dr. Drorit Or, a specialist at Mount Sinai West in New York, highlighted that the pain can be so intense that it disrupts daily life, making attendance at school, work, or even simple activities infeasible. Armstrong recalled enduring stabbing pains starting at age 11, which later escalated to debilitating discomfort, nausea, and other distressing symptoms in her adult life.
Despite her experiences, Armstrong was not diagnosed with endometriosis until age 29, when a doctor, who also battled the disease, finally provided clarity. An ultrasound revealed an endometrioma, a fluid-filled cyst related to endometriosis. The moment she recognized her condition was legitimate, Armstrong felt an emotional release, sharing tears with her mother. Subsequent verbal confirmations from medical professionals and surgical confirmation solidified her diagnosis.
Experts point to several reasons behind the lengthy diagnostic timeline, including the normalization of menstrual pain by both patients and doctors, symptom overlap with other medical conditions, and varying levels of endometriosis knowledge among healthcare providers. Dr. Megan Billow from the Cleveland Clinic suggests that tracking pain patterns through a diary can be instrumental in ensuring patients are well-prepared for medical consultations, enabling them to inquire about the possibility of endometriosis.
New endometriosis tests are used outside the U.S.
Innovative diagnostic tools are currently utilized in some international settings but await Food and Drug Administration (FDA) approval in the United States. Among these is EndoSure, a swift, half-hour test that detects endometriosis by measuring electrical signals in the gut through sensor pads on the abdomen, providing immediate results. Another test, Endotest, analyzes saliva samples for microRNAs associated with endometriosis, returning results within two to three weeks.
In the United Kingdom, health authorities are considering implementing both tests to enhance primary care diagnosis timelines while gathering further effectiveness data. Dr. Mark Noar, founder of EndoSure, is in the process of seeking FDA approval. Meanwhile, the French company Ziwig is taking steps to provide Endotest in the U.S. through a special pathway. Ziwig’s Dr. Andrew Spiers emphasized that this diagnostic test serves as an initial step, suggesting that confirming endometriosis would lead doctors to pursue additional imaging if necessary.
Medical professionals acknowledge that while these new tests are not designed to replace existing diagnostic methods, they could be beneficial in the pathway to diagnosis. However, they will not resolve the long-standing issue of the normalization of menstrual pain.
Various endometriosis treatments are available
Once diagnosed, individuals can collaborate with their healthcare providers to establish treatment plans tailored to their needs. Available treatments often include pain relievers such as ibuprofen, hormone therapies designed to alleviate symptoms, and surgical interventions such as excision surgery to remove endometriosis lesions. Armstrong underwent such surgical treatment and continues to manage her health with multiple healthcare providers, including regular pelvic floor therapy appointments.
Additionally, she is actively involved in educational outreach with the Endometriosis Foundation, visiting schools in New York City to raise awareness among students about endometriosis and women’s health issues overall. Armstrong believes it’s vital for young women to understand their bodies and know that support is available.
Dr. Or reminds young women suffering from similar issues that help is accessible, asserting that living in pain is unnecessary and encouraging individuals to seek effective management of the condition for a fulfilling life.
