THE ALLIANCE FORENDOMETRIOSIS
LET’S ENDOTHE PAIN

One in 10 women of reproductive age in the United States has endometriosis.i

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THE
SURVEY

Endometriosis pain shouldn’t be considered normal.

Pain isn’t something to just “get through” or hide, and it’s definitely not something to be ashamed of. But endometriosis pain is often dismissed or ignored, and many people living with endometriosis in the United States suffer in silence without the support they need.ii,iii

What is endometriosis?

Endometriosis, or endo, is a disease where the tissue that forms the inside lining of the uterus grows where it doesn’t belong — sometimes on the ovaries, fallopian tubes and other organs found in the pelvic area — which can cause chronic pain.i

What are the symptoms?

This out-of-place tissue can shed and bleed, just like your uterine lining does when you get your period, which can cause swelling and period pain or cramping, as well as pain throughout the month and during sex.i Other symptoms may include heavy periods, constipation, nausea, diarrhea and fertility issues.i,iv

What is the impact?

Endo can affect day-to-day life beyond period pain — from missed work and school to lost time with loved ones and financial issues.v,vi At the same time, endo symptoms are often dismissed as “normal,” and it can take as many as 10 years for some people to get diagnosed.ii,iii, vii,viii

Why did we create the Alliance for Endometriosis?

We’re here to help inspire conversations about endo that lead to real, positive and sustainable change - starting with you. Whether you have endo or endo symptoms, we want to hear about your experience. What you share will help us create a program that we hope will eliminate endo-related stigma or shame, amplify your voices and address the many challenges of endo.

We want to hear from you.

Taking just 10 minutes to share your experiences in our short survey will help us work to change what it means to live with endo by building a better future where people with endo or endo symptoms are heard, believed and supported.

We can’t succeed without you and hope you’ll join us.

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THE
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. We hope you’ll consider sharing your endometriosis story on social media to let others who may be suffering know they are not alone. #LetsEndoThePain

#LetsEndoThePain

Help us break the silence and stigma surrounding endometriosis. Share your stories on social media. #LetsEndoThePain

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 lead to faster diagnoses and improved treatment experiences. If you have endometriosis or endometriosis symptoms, we want you to be heard, believed and supported.

Abbvie Logo American College of Obstetricians and Gynecologists Logo Black Women's Health Imperative Logo Endometriosis Association Logo General Electric Logo HealthyWomen Logo
  1. The American College of Obstetricians and Gynecologists (2019). Frequently Asked Questions: Endometriosis. https://www.acog.org/patient-resources/faqs/gynecologic-problems/endometriosis.
  2. Ballard K, Lowton K, Wright J. What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertil Steril. 2006;86(5):1296-1301.
  3. Seear K. The etiquette of endometriosis: stigmatisation, menstrual concealment and the diagnostic delay. Soc Sci Med. 2009;69(8):1220-1227.
  4. Office on Women’s Health (2020). A-Z Health Topics: Endometriosis. https://www.womenshealth.gov/a-z-topics/endometriosis.
  5. Fourquet J, et al. Quantification of the impact of endometriosis symptoms on health related quality of life and work productivity. FertilSteril. 2011;96(1):107-112.
  6. Greene R, et al. Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis. FertilSteril. 2009;91(1):32-39.
  7. Giudice LC, et al. Endometriosis. Lancet. 2004 Nov 13-19;364(9447):1789-99.
  8. Nnoaham KE, et al. Impact of Endometriosis on Quality of Life and Work Productivity: A Multicenter Study Across Ten Countries. FertilSteril. 2011 Aug;96(2):366-373.e8.

Online survey sponsored by AbbVie and developed in consultation with the Alliance members, including the American College of Obstetricians and Gynecologists (ACOG), Black Women’s Health Imperative (BWHI), the Endometriosis Association, GE Healthcare, HealthyWomen and the International Pelvic Pain Society (IPPS).

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