A nationwide survey led by HealthyWomen, an independent women’s health organization based in Red Bank, New Jersey, shows a big gap in how women and healthcare professionals understand endometriosis.

Endometriosis causes painful intercourse, long-term pelvic pain and other symptoms. Yet the poll showed that not even a third of the women surveyed correctly recognized all the pain-associated symptoms of endometriosis. In addition, two-thirds of the women surveyed knew someone who had endometriosis but rarely discussed pelvic pain with that person.

These findings furthermore reinforce the idea that more awareness and education are needed to improve outcomes and diagnosis.

Sponsored by AbbVie, the “What Do You Know About Endometriosis?” survey was conducted online from Dec. 7, 2016, to Feb. 6, 2017, among 1,211 adult women and 352 U.S. healthcare professionals.

“The survey findings indicate a lack of knowledge and conversation about endometriosis symptoms among women,” Beth Battaglino, CEO of HealthyWomen, said in a press release. “Without informed communication of endometriosis symptoms, it can take longer for women to receive a diagnosis. Both patients and healthcare professionals would benefit from further education to increase awareness of symptoms so women can take action when they present.”

Among the survey’s conclusions:

• Around 42 percent of women respondents didn’t know that painful intercourse might be a symptom of endometriosis, and 20 percent of healthcare professionals rarely or never asked female patients about this pain.
• Of the 219 women who claimed to have an endometriosis diagnosis, 42 percent had been told by their physician that their pain was “simply part of being a woman,” while 47 percent had their symptoms described as “normal.”
• Of the 260 women who reported having an endometriosis diagnosis, 72 percent had to see two or more doctors before receiving a diagnosis, and 24 percent had to see four or more doctors. In addition, 23 percent of the 260 respondents with endometriosis had to wait for four or more years to be diagnosed correctly.
• Only 34 percent of the healthcare professionals reported asking if pelvic pain interfered with their patients’ daily activities at every visit. This is an important point, as 86 percent of the women respondents with endometriosis said the pain somehow interfered with their daily activities.

Based on the survey, HealthyWomen created an information kit on endometriosis to inform women what to discuss with their healthcare providers. This initiative was part of a campaign called “Get in the Know about ME in EndoMEtriosis,” which seeks to empower women with endometriosis.

These materials were released this month, as March is Endometriosis Awareness Month, and can be found on HealthyWomen’s website. Join the conversation on social media by sharing the hashtag #MEinEndo.