Key Takeaways
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, theAmerican College of Obstetricians and Gynecologists(ACOG), theBlack Women’s Health Imperative(BWHI), theEndometriosis Association,GE Healthcare,HealthyWomen, and theInternational Pelvic Pain Society(IPPS).
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, theAmerican College of Obstetricians and Gynecologists(ACOG), theBlack Women’s Health Imperative(BWHI), theEndometriosis Association,GE Healthcare,HealthyWomen, and theInternational Pelvic Pain Society(IPPS).
New Alliance for Endometriosis Promotes Awareness and Support
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, theintestines, the space behind the uterus, the bladder and ureters, and other organs.The lesions cancause painand other symptoms depending on where they are located. However, thestageof 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.
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, theintestines, the space behind the uterus, the bladder and ureters, and other organs.The lesions cancause painand other symptoms depending on where they are located. However, thestageof 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.
Why Do People Get Endometriosis?
According to the survey’s findings:
Research on endometriosis primarily involves people who identify as women. However, the condition can occur in people with ovaries and a uterus whodo 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:
What Does Endometriosis Feel Like?
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.
Endometriosis Is More Common in Teenagers Than Previously Thought
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.
How Is Endometriosis Diagnosed?
It took me 15 years of living in pain and begging doctors for help before I got diagnosed with endometriosis. I had already had ahysterectomy(the removal of my uterus) and was receiving anoophorectomy(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.”
Will a Hysterectomy Cure Endometriosis?
My mother hadpolycystic 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 throughmenopause at the age of 32because 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 apress 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 ofHealthyWomen, 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.”
What to Do If Your Doctor Tells You Your Symptoms Are “All In Your Head”
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 PlanThe Alliance’s action plan has three parts: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
The Alliance’s Action Plan
The Alliance’s action plan has three parts: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
The Alliance’s action plan has three parts:
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 oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
PR Newswire.The Alliance for Endometriosis Survey Reveals Actions Needed to Improve the Endometriosis Patient Experience.
Endometriosis Foundation of America.What Is Endometriosis?.
Zondervan KT, Becker CM, Missmer SA.Endometriosis.The New England Journal of Medicine. 2020; 382:1244-56. doi:10.1056/NEJMra1810764
Bontempo AC, Mikesell L.Patient perceptions of misdiagnosis of endometriosis: results from an online national survey.Diagnosis (Berl).2020 May 26;7(2):97-106. doi:10.1515/dx-2019-0020
World Health Organization.Endometriosis.
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