THE ALLIANCE FORENDOMETRIOSIS

About one in 10 women of reproductive age in the United States has endometriosis.i
Let’s endo the pain.

Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person Person

We asked. You answered.

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.

No matter what anyone says, endo pain isn’t "normal."

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.

* 90%

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

For all those endo skeptics, facts may speak louder than words.

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.

60% More than *

believed that access to research that supports both the physical symptoms and emotional impact of the disease would help reduce endo-related stigma.ii

Endo patients are seeking improved conversations with health care providers.

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

40% About *

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 action to endo the pain.

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

Alliance for Endometriosis Survey

To get started, we’d love to know more about you.

What is your current gender identity?

Please select the best option.

What sex were you assigned at birth on your original birth certificate?

Please select the best option.

Which of the following describes you?

Please select the best option.

How frequently, if ever, do you feel that your endometriosis symptoms are disbelieved, dismissed or ignored by others?

Please select the best option.

Have you discussed your endometriosis symptoms with a health care provider?

Which of the following, if any, have you experienced related to your endometriosis symptoms in your personal or professional relationships (e.g., friends, family, colleagues, etc.)?

Please select all that apply.

Which of the following actions, if any, do you think could help reduce endometriosis-related stigma (e.g., disapproval or discrimination)?

Please select all that apply.

What type of health care provider or practitioner, if any, diagnosed you with endometriosis and/or is helping to treat your symptoms?

Please select all that apply.

When you discuss your endometriosis symptoms with a health care provider, how often, if ever, would you describe the discussions as open and productive?

Please select the best option.

Which of the following, if any, have you experienced related to your endometriosis symptoms when speaking with a health care provider?

Please select all that apply.

Which of the following types of information or actions, if any, did your health care provider share with you about your endometriosis or treatment?

Please select all that apply.

Which of the following treatment options (medical or surgical), if any, has your health care provider prescribed or recommended to help manage your endometriosis symptoms?

Please select all that apply.

How many different treatment options (medical or surgical) have you and your health care provider tried to help manage your endometriosis symptoms.

Please select the best option.

Which of the following statements best describes your current treatment status?

Please select the best option.

For the next three questions, please select your level of agreement with the statement describing interactions with a health care provider.

I feel comfortable discussing my endometriosis symptoms with my health care provider.

Please select the best option.

I feel heard, believed and supported by my health care provider when discussing my endometriosis symptoms.

Please select the best option.

My health care provider answered my questions about symptoms and addressed my concerns to my satisfaction.

Please select the best option.

Which of the following, if any, could improve the conversation between you and a health care provider?

Please select all that apply.

In your opinion, how aware are health care providers about the social, emotional and physical impact of endometriosis and endometriosis symptoms?

Please select the best option.

Which of the following, if any, do you wish that health care providers better understood about the social, emotional and physical impact of endometriosis and endometriosis symptoms?

Please select all that apply.

Before you finish the survey, please let us know you’re not a robot by selecting the number six from the list below.

There was an error submitting the survey. Please try again later.

Thanks for taking the time to tell us about your experience.

Your answers will help us create solutions that we hope will improve the lives of people with endometriosis.

About the Alliance for 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.

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