Thanks to more than 1,800 experiences shared in our survey, we have a better idea of how to create real, positive and sustainable change for people with endo. We heard you, we believe you and now it’s time to show how we’re going to support you.
Our survey revealed the sizeable disconnect between one person's endo reality and the perceptions of others, who can be dismissive and sometimes even disbelieving of endo-related symptoms.
reported this happens at least monthly; with family, friends, employers and health care providers often labeling symptoms as a "normal part of being a woman." ii
Overwhelmingly, survey respondents believed that if the full impact of the disease is supported by research (aka, facts!) it will more effectively resonate with people who are otherwise dismissive and disbelieving.
believed that access to research that supports both the physical symptoms and emotional impact of the disease would help reduce endo-related stigma.ii
According to our survey, more than 70% of people with endo are comfortable talking to their health care providers about their symptoms, but over 30% leave those conversations wanting more.ii
reported their discussions with health care providers are not or rarely open or productive, with one in four saying they don’t feel heard, believed or supported.
More than 50% believed that if health care providers had a better understanding of how endo impact patients and put more emphasis on personalized treatment plans, it could improve conversations with patients.ii
We’re taking what you shared about your experiences with endo to heart. We know the road has not been easy, so we created a plan based on your responses to our survey that will help change what it means to live with endo and pave the way towards a better future.
Our plan is to:
Create empathy
among people who may not fully understand the disease and its impacts by sharing stories that illustrate the unique experiences of endo
Educate health care providers
about the physical, emotional and financial impact of endo using research that supports and validates different patient experiences
Work with health care providers who may not be familiar with endo
to teach them about the many signs of endo and to foster more open and productive conversations
Your answers will help us create solutions that we hope will improve the lives of people with endometriosis.
The Alliance for Endometriosis is a group of organizations with a single goal: to improve the lives of people with endometriosis. Together, we hope to eliminate stigma and encourage more open and productive conversations that will lead to faster diagnoses, better education and improved treatment options and experiences. If you have endometriosis or endometriosis symptoms, we want you to be heard, believed and supported.
