Why do women and their doctors often miscommunicate about endometriosis?

Women and their doctors or other health care professionals (HCPs) often miscommunicate about endometriosis due to a lack of understanding of how to identify symptoms of endometriosis and how to address them. 

A 2017 online survey titled "What Do You Know About Endometriosis?" was conducted in the United States among 1,211 women over the age of 18 and 352 HCPs.

Among 850 women respondents, approximately 37 percent identified themselves as diagnosed with endometriosis. Of those, 219 women responded to additional questions about their symptoms, and 42 percent were told by their HCPs that their pain was simply "part of being a woman," while 47 percent had their symptoms described by HCPs as "normal."

The communication issues are not, however, all one-sided. Only 43 percent of HCPs surveyed said they are very comfortable when it comes to managing female patients with chronic pelvic pain. HCPs reported they are more likely to consider endometriosis as a possible cause of chronic pelvic pain than as a possible cause of first-time acute pelvic pain.

Only 34 percent of HCPs surveyed said they ask if pelvic pain interferes with daily activities at every visit. However, among approximately 260 women respondents who identified themselves as being diagnosed with endometriosis, 86 percent said the condition interferes with their day-to-day activities at least some of the time.

This communication breakdown speaks to the need for providers to be more aware of evaluating and treating symptoms. Women should also feel empowered to share their symptoms to help ensure key information about endometriosis indicators is not left out during appointments with HCPs. Among 862 women respondents, two-thirds (67 percent) know someone who has endometriosis, but the majority (60 percent) said they rarely, if ever, speak to friends, family or those closest to them about pelvic pain.

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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.