There have been unanswered questions about endometriosis for as long as it has been identified as a medical condition. We do not know yet why an estimated one in 10 women of reproductive age worldwide develop this often painful, chronic condition while others do not. We do not have a single, successful non-surgical treatment for endometriosis, characterized by lesions that mimic the tissue of the endometrial lining of the uterus that can grow outside of the uterus and on other organs, mainly in the pelvic cavity. We do know that if we are to better understand, and hopefully someday solve, endometriosis, we need to upend the view that it is solely a chronic pelvic pain condition associated with infertility. Endometriosis lesions can grow anywhere in the body, from the pelvic area to the lungs and brain, and can affect many organ systems. Reducing the condition to a reproductive problem keeps us from considering the many comorbidities and risk factors that often accompany endometriosis, keeping patients from understanding the whole picture of their health so they can manage it.
The systemic risks of autoimmune and cardiovascular diseases
Endometriosis patients need to know they are more likely to be diagnosed with autoimmune diseases, conditions that mistakenly attack the body’s own healthy cells, tissues, and organs, causing inflammation and damage. This includes an estimated 2.03 times higher risk of being diagnosed with lupus and 1.4 times higher risk of being diagnosed with rheumatoid arthritis. The autoimmune story does not end there: Patients with endometriosis also have been shown to be at increased risk for five other autoimmune diseases, from Hashimoto’s thyroid disease, multiple sclerosis (MS), and pernicious anemia, to Sjogren’s syndrome and myositis within two years of their endometriosis diagnosis.
There are cardiovascular implications, too. Endometriosis patients are at higher risk for heart attacks, high blood pressure, and high cholesterol. A 2023 study that included thousands of women with confirmed endometriosis had a 50 percent higher risk of coronary heart disease compared to a control group. The American Heart Association (AHA) has gotten the message, citing that women with a history of endometriosis may be at moderate risk for having a stroke later in life than their peers without endometriosis. The higher risk may be due, in part, to chronic inflammation, procedures to treat the condition (hysterectomy, removing ovaries), or hormone therapy. Still, the AHA recommends that health care professionals advise women with endometriosis to take preventive measures to mitigate the added cardiovascular risk.
The link between endometriosis and cancer
And then there is cancer. There is a long-term, firmly established fourfold risk between endometriosis and developing type I ovarian cancer, with the risk rising dramatically for patients with more severe forms of endometriosis. Endometriosis patients face a higher risk of endometrial cancer as well. Yet these risks are not widely known or discussed because of an education gap for both patients and physicians.
Closing the education and research gap
For doctors, the information gap starts in medical school, where endometriosis is not taught comprehensively and, when taught, may not be updated or continued throughout medical training. While obstetrician-gynecologists (OB/GYNs) may be better trained, other medical specialties such as internal medicine, family medicine, and cardiology are not. Patients often do not know about their risk factors and comorbidities, in part, because their doctors are likely not aware of them, and because unreliable information on endometriosis abounds on social media. Chronic underrepresentation of women in research and underfunding of women’s health research does not help. Male-dominant conditions receive about 70 to 75 percent of the total funding compared to female-dominant diseases. And it persists in spite of the fact that about one in 10 women experience endometriosis, about the same as diabetes.
It all leads to both patients and physicians not having the full research resources or medical picture, ultimately missing opportunities for care across medical specialists. Imagine how much more comprehensive care would be if it were coordinated among gynecologists, cardiologists, rheumatologists, and oncologists, all communicating about endometriosis as a systemic condition that affects the whole body. That care should not be out of reach when the research is so clear: Some of these co-existing conditions are preventable or manageable with early detection and lifestyle changes. Patients informed of cardiovascular risk can pursue prevention strategies. Those aware of autoimmune vulnerabilities can be monitored for early signs. Patients who understand their cancer risks can participate in appropriate screenings. But this only happens with coordinated education, research, and action. The science is moving forward; it is time for clinical practice and patient care to follow.
Christine N. Metz is an obstetrics and gynecology professor and endometriosis study director.
