Unheard and Disbelieved
The survey asked 1,817 people who were either diagnosed with endometriosis or had discussed endometriosis symptoms with a healthcare professional about the conversations that they have with others about their condition. It was conducted between November 2020 and January 2021.
Many of the survey respondents said that not only do they feel that their healthcare providers do not understand their experiences with endometriosis, but their family and friends also lacked an understanding of the condition.
According to the survey’s findings:
90% of people with endometriosis reported being disbelieved, dismissed, or ignored by others at least monthly. 62% said that their family, friends, or employers have told them that the symptoms of the condition are a “normal part of being a woman. “42% were told that their symptoms were normal by their healthcare professionals.
Other key findings from the survey include:
40% of survey respondents said that their discussions with healthcare professionals—including OB-GYNs, primary care physicians, nurse practitioners, and emergency room doctors—have been neither open nor productive. 70% believe that healthcare professionals have limited awareness of the impact of endometriosis on patients’ lives. 76% wish that their healthcare professionals understood the physical pain that the condition causes and 68% said that they wish their doctors understood how their symptoms affect their ability to participate in different activities in their lives.
Not Surprising to People With the Condition
The survey’s findings might come as a shock to some, but for many people living with endometriosis, they do not come as a surprise.
Endometriosis affects roughly 10% of reproductive-age women and girls around the world. In the United States, it’s estimated that 11% (more than 6.5 million) of women in this age group have endometriosis.
It takes, on average, 8.6 years to be diagnosed with the condition.
Studies have also shown that 75.2% of patients report being misdiagnosed with another physical health (95.1%) and/or mental health condition (49.5%) before they were correctly diagnosed with endometriosis.
It took me 15 years of living in pain and begging doctors for help before I got diagnosed with endometriosis. I had already had a hysterectomy (the removal of my uterus) and was receiving an oophorectomy (the removal of my ovaries) when they discovered that I had endometriosis.
Before being diagnosed, I was regularly told that my heavy and irregular periods were normal. I was often made to feel silly or immature or that I was exaggerating even though I was doubled over in pain. My older relatives would just shrug and tell me, “It’s just what we have to go through.”
My mother had polycystic ovary syndrome (PCOS) and did not get a hysterectomy until she was in her 40s. Her body was horribly damaged as a result of having to wait so long. I only learned this year that my maternal grandmother—with whom I’m very close—went through menopause at the age of 39. She’s still ashamed to talk about it.
I’m currently going through menopause at the age of 32 because doctors did not listen to my concerns for nearly half my life.
How the Alliance Plans to Create Change
In a press release, the Alliance for Endometriosis said that “while progress has been made in recent years to address the challenges associated with endometriosis, the Alliance survey findings reinforce that more work needs to be done.”
Conducting the survey to hear from people with endometriosis was the Alliance’s first priority when it was formed in November 2020.
In the press release, Beth Battaglino, RN-C, Chief Executive Officer of HealthyWomen, said that the impact of endometriosis “goes far beyond its physical symptoms, and it is critical to the Alliance that we capture the experiences of people managing this disease every day so we can accurately address the needs of the community.”
Battaglino said that the Alliance is “grateful for those who shared their stories and experiences in our survey, which have further motivated us to address the stigma associated with endometriosis and create meaningful change for these patients.”
Taking Action
The Alliance has come up with an Action Plan to reduce—or ideally, eliminate—the stigma of endometriosis and encourage more productive conversations between patients and physicians.
Hopefully, better communication will improve treatment and help people not just get a diagnosis more quickly, but lead to more people with endometriosis getting a diagnosis at last.
Listening and Understanding
While the Alliance’s plan is ambitious and has the potential to raise awareness, people living with endometriosis have been taking these steps on their own for years.
Sharing the stories of those with endometriosis, in order to show those who may not fully understand the disease its full impactEducating those in health care about the physical, emotional, social, and financial effects of the diseaseWorking with healthcare professionals who are perhaps not as knowledgeable on endometriosis to teach them how to identify the illness
We are already working hard and using too much emotional and mental energy trying to get our healthcare professionals to listen to and understand us. For endometriosis care to evolve and improve for everyone, doctors have to be willing to listen to and believe their patients instead of dismissing them.
Endometriosis also has a way of inserting itself into every relationship we have—whether with family and friends, romantic and sexual partners, or coworkers. That’s why we need the people in our lives to hear us and try to learn more about what it’s like to live with the condition.
