• Endometriosis and Life Impact Study

    Share your experience for our longitudinal study on mental, professional, and economic impacts.

  • Privacy and Confidentiality

  • Thank you for taking the time to share your experiences. If you’re open to follow-up, please let us know below. Your participation is voluntary, and you may skip any question you do not wish to answer. Your responses will be kept confidential, stored securely, and accessed only by authorized individuals. Data will be used for research and advocacy purposes and may be reported in publications or presentations in a way that minimizes the risk of identifying you. Confidentiality cannot be guaranteed in all circumstances, including where disclosure is required by law. By participating, you acknowledge that you have been informed about how your information will be used. 

     

  • B5. Have you ever had surgery for endometriosis?*
  • B6. Has a health care professional told you that you have any of the following? Select all that apply.*
  • B7. How would you rate your understanding of your endometriosis?*
  • B8. How often do you feel that your symptoms are taken seriously by health care professionals?*
  • B9. Have you experienced delays in diagnosis, dismissal of symptoms, or difficulty accessing appropriate care?*

  • SECTION C. PHYSICAL AND REPRODUCTIVE SYMPTOMS

  • For questions C1–C12, think about the past 4 weeks. Use the following frequency scale unless otherwise stated: 0 = Never 1 = Rarely 2 = Sometimes 3 = Often 4 = Almost always N/A = Not applicable or unable to assess
  • C1. How often have you experienced pelvic or lower abdominal pain?*
  • C2. How often have you experienced painful menstrual cramps?*
  • C3. How often have you experienced pain outside your menstrual period?*
  • C4. How often have you experienced pain during or after sexual activity?*
  • C5. How often have you experienced painful bowel movements, constipation, diarrhea, or other bowel symptoms that you associate with endometriosis?*
  • C6. How often have you experienced pain or difficulty with urination?*
  • C7. How often have you experienced bloating or abdominal swelling?*
  • C8. How often have you experienced fatigue or exhaustion that interfered with your day?*
  • C9. How often have you experienced nausea, dizziness, or feeling faint in association with your symptoms?*
  • C10. How often have you experienced heavy, prolonged, irregular, or otherwise disruptive menstrual bleeding?*
  • C11. How often have you experienced difficulty sleeping because of pain or other symptoms?*
  • C12. How often have you experienced difficulty concentrating or thinking clearly because of symptoms or fatigue?*
  • C15. How predictable are your symptoms?*
  • C16. Do your symptoms change in relation to your menstrual cycle?*
  • C18. Compared with 6 months ago, your physical symptoms are:*

  • SECTION D. REPRODUCTIVE HEALTH AND FERTILITY

    These questions concern reproductive health, including fertility, pregnancy, and reproductive choices. Please skip any questions you do not wish to answer.
  • Please skip any questions you do not wish to answer.
  • D1. Are you currently trying to become pregnant?*
  • D2. Have you experienced difficulties conceiving that you associate with endometriosis?*
  • D3. Have you ever sought medical advice or treatment for fertility concerns?*
  • D4. To what extent has endometriosis affected your decisions about having children?*
  • D5. Has endometriosis affected your feelings about your fertility or ability to have children?*
  • D6. Have you ever experienced a pregnancy, miscarriage, ectopic pregnancy, stillbirth, or other pregnancy-related outcome you wish to report?*
  • D7. Have you used hormonal treatment, fertility treatment, or surgery that influenced your reproductive plans?*

  • SECTION E. MENTAL AND EMOTIONAL WELL-BEING

  • For questions E1–E8, think about the past 4 weeks. Use the scale: 0 = Never; 1 = Rarely; 2 = Sometimes; 3 = Often; 4 = Almost always.
  • E1. How often have you felt frustrated by the effect of endometriosis on your life?*
  • E2. How often have you felt anxious or worried about your symptoms or their unpredictability?*
  • E3. How often have you felt low, sad, or emotionally exhausted because of endometriosis?*
  • E4. How often have you worried about your future health or long-term complications?*
  • E5. How often have you felt isolated or misunderstood because of your condition?*
  • E6. How often have you felt that you have lost control over aspects of your life because of endometriosis?*
  • E7. How often have you struggled to cope with the emotional burden of living with endometriosis?*
  • E8. How often have you felt supported by family, friends, or other people in your life?*
  • E9. Overall, how much has endometriosis affected your mental well-being in the past 4 weeks?*
  • E10. Have you sought professional support for emotional or mental health difficulties related to endometriosis?*

  • SECTION F. EMPLOYMENT, EDUCATION, AND PRODUCTIVITY

  • Answer based on your circumstances during the past 4 weeks. If you are not employed or studying, answer any questions that apply to unpaid work, caregiving, or daily responsibilities.
  • F1. Have endometriosis symptoms caused you to miss work, school, or study?*
  • F3. How often have you attended work or study while experiencing symptoms that affected your performance?*
  • F4. When working or studying with symptoms, how much has your productivity been affected?*
  • F5. Have you reduced your working hours, changed duties, or changed your education plans because of endometriosis?*
  • F6. Have you declined a promotion, job opportunity, educational opportunity, or professional development activity because of endometriosis?*
  • F7. How comfortable do you feel disclosing your condition to an employer, manager, or educational institution?*
  • F8. Have you experienced stigma, disbelief, discrimination, or negative treatment at work or in education because of your symptoms?*
  • F9. Have you received workplace or educational accommodations, such as flexible hours, remote work, breaks, or time off?*
  • F10. How much has endometriosis affected your career progression or long-term educational goals?*

  • SECTION G. FINANCIAL IMPACT

  • Unless otherwise stated, answer about the past 3 months.
  • G1. Have you incurred out-of-pocket expenses related to endometriosis?*
  • G2. Which expenses have you incurred? Select all that apply.*
  • G4. How much financial strain have these expenses caused you or your household?*
  • G5. Have you lost income because of missed work, reduced hours, job changes, or time away from employment due to endometriosis?*
  • G6. Has endometriosis affected your ability to pay for essential needs, such as housing, food, transport, utilities, or childcare?*
  • G7. Have you delayed or avoided medical care because of cost, insurance restrictions, or lack of coverage?*
  • G8. Have you used savings, borrowed money, used credit, or relied on financial assistance to manage endometriosis-related costs?*
  • G9. Has endometriosis affected your ability to save money, plan financially, or achieve financial independence?*
  • G10. Overall, how would you describe the financial impact of endometriosis on your life?*

  • SECTION H. DAILY LIFE, RELATIONSHIPS, AND SOCIAL PARTICIPATION

    For questions H1–H8, think about the past 4 weeks.
  • H1. How often have symptoms interfered with household tasks, cooking, cleaning, or shopping?*
  • H2. How often have you been unable to participate in social activities or events because of symptoms?*
  • H3. How often have you canceled plans at short notice because of endometriosis?*
  • H4. How often have symptoms affected your ability to exercise or engage in hobbies?*
  • H5. How often has endometriosis affected your relationship with a partner, family member, or close friend?*
  • H6. How often have symptoms affected your sexual well-being, intimacy, or confidence in sexual relationships?*
  • H7. How often have you felt that others do not understand the impact of your condition?*
  • H8. How often have you needed other people to help with everyday activities because of endometriosis?*
  • H9. Overall, how much has endometriosis reduced your independence?*

  • SECTION I. HEALTH CARE, TREATMENT, AND SELF-MANAGEMENT

  • I1. Which treatments or management approaches have you used in the past 12 months? Select all that apply.*
  • I2. How satisfied are you with the effectiveness of your current treatment or management plan?*
  • I3. How often do treatment side effects affect your daily life?*
  • I4. Have you stopped, changed, or delayed treatment because of side effects, cost, limited access, or other concerns?*
  • I5. How easy is it for you to access the health care you need for endometriosis?*
  • I6. How involved do you feel in decisions about your care?*
  • I7. How confident do you feel managing your symptoms on a day-to-day basis?*

  • SECTION J. OVERALL QUALITY OF LIFE

  • J1. Overall, how would you rate your quality of life during the past 4 weeks?*
  • J2. How much has endometriosis affected your ability to live the life you want?*
  • J3. Which three areas of your life have been most affected by endometriosis? Choose up to three.*
  • Format: (000) 000-0000.
  • Preferred method of contact*
  • May we contact you to follow up as needed?*
  • Should be Empty: