90% Of People With Endometriosis Report Being Dismissed by Doctors and Family

A person in pain on a bed holding their stomach/pelvis.


Key Takeaways

  • A new survey shows that people with endometriosis face stigma, even from their doctors.
  • 90% of people with endometriosis reported being disbelieved, dismissed, or ignored by others at least monthly.
  • To people with endometriosis, these results may not be surprising.

The results of a national public survey conducted by The Alliance for Endometriosis have shed light on the experiences of people living with endometriosis and the stigma that they encounter from the people in their lives—including their doctors.

What Is the Alliance for Endometriosis?

The Alliance for Endometriosis includes several organizations that have come together to improve the lives of people with endometriosis. Members of the alliance include AbbVie, the American College of Obstetricians and Gynecologists (ACOG), the Black Women's Health Imperative (BWHI), the Endometriosis Association, GE Healthcare, HealthyWomen, and the International Pelvic Pain Society (IPPS).

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.

What Is Endometriosis?

Endometriosis is a condition that occurs when tissue that is similar to the type that lines the uterus grows in other places, like the ovaries and fallopian tubes, the intestines, the space behind the uterus, the bladder and ureters, and other organs. The lesions can cause pain and other symptoms depending on where they are located. However, the stage of the condition or how many lesions a person has does not necessarily equal the severity of a person's symptoms. For example, a person with few lesions of endometriosis can have severe pain.

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.

Research on endometriosis primarily involves people who identify as women. However, the condition can occur in people with ovaries and a uterus who do not identify as women. As a result of the lack of inclusive research, the effects of endometriosis in people who do not identify as women are not as well understood.

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.

According to the World Health Organization, early diagnosis of endometriosis can slow or even halt the progression of the disease, helping to avoid outcomes like early menopause.

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.

The Alliance's Action Plan

The Alliance's action plan has three parts:

  1. Sharing the stories of those with endometriosis, in order to show those who may not fully understand the disease its full impact
  2. Educating those in health care about the physical, emotional, social, and financial effects of the disease
  3. Working with healthcare professionals who are perhaps not as knowledgeable on endometriosis to teach them how to identify the illness

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.

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.

6 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. PR Newswire. The Alliance for Endometriosis Survey Reveals Actions Needed to Improve the Endometriosis Patient Experience.

  2. Endometriosis Foundation of America. What Is Endometriosis?.

  3. Zondervan KT, Becker CM, Missmer SA. Endometriosis.The New England Journal of Medicine. 2020; 382:1244-56. doi:10.1056/NEJMra1810764

  4. Buck Louis GM, Hediger ML, Peterson CM, et al. Incidence of endometriosis by study population and diagnostic method: the ENDO studyFertil Steril. 2011;96(2):360-365. doi:10.1016/j.fertnstert.2011.05.087

  5. Bontempo AC, Mikesell L. Patient perceptions of misdiagnosis of endometriosis: results from an online national surveyDiagnosis (Berl). 2020 May 26;7(2):97-106. doi:10.1515/dx-2019-0020

  6. World Health Organization. Endometriosis.

By Rachel Charlton-Dailey
Rachel Charlton-Dailey (she/they) is a health and disability journalist. They serve as editor-in-chief of The Unwritten, a platform for the stories of disabled people. Their work features in publications such as Healthline, Huffpost, Metro UK, The Guardian, and Business Insider.