EndoUnfiltered

EndoUnfiltered · Advocacy

Take action for
endometriosis care.

Faster diagnosis. Better coverage. More research funding. Start with your own care or contact the people making policy.

10 practical stepsUS advocacy resourcesFollow current legislation

Where to begin

Choose your next step.

0 of 10 completed this visit

  1. 01

    Keep a symptom record

    Track pain, cycle timing, bowel and bladder symptoms, and missed work or school. A written history gives your provider a record of symptoms and their effect on daily life.

    Use our interactive symptom tracker
  2. 02

    Ask for a specialist referral

    If first-line treatment fails, ask directly for referral to a gynaecologist with endometriosis expertise, and ask for the refusal in writing if it is declined.

    Patient resources
  3. 03

    Learn the guidelines

    ACOG and ASRM guidance state that diagnosis should not wait for surgery. Bring the guideline to your appointment if you want to discuss diagnosis without surgery.

    ACOG patient FAQ on endometriosis
  4. 04

    Contact your representatives

    Ask them to fund women's health research proportionately to disease burden. Endometriosis receives a small fraction of the research funding given to conditions of similar prevalence. Name the bill or funding request and explain how the condition affects you.

    Find your representatives by addressDraft a message
  5. 05

    Support research funding bills

    Follow legislation on women's health research, fertility coverage and menstrual equity, and sign on when advocacy groups issue calls to action.

    Guttmacher state policy tracker
  6. 06

    Push for workplace policy

    Ask employers for flexible working, menstrual and reproductive health policies, and insurance that covers excision surgery and fertility care.

    Workplace accommodation guidance from the Job Accommodation Network
  7. 07

    Join a clinical trial or registry

    Registries and clinical trials rely on volunteers to study diagnosis and treatment.

    Search ClinicalTrials.gov
  8. 08

    Back patient organisations

    Donate to, volunteer with or share resources from the Endometriosis Foundation of America, the Endometriosis Association, Resolve, SisterSong and the Center for Reproductive Rights.

    Patient resources
  9. 09

    Bring it into schools

    Menstrual health education that names endometriosis helps young people recognise symptoms early. Ask your school board whether it is taught.

    Draft a message
  10. 10

    Share reporting that is accurate

    Share reporting with sources, including information on when severe period pain needs medical evaluation.

    Patient resources

Write to your representatives

Ask for something specific.

Six policies to ask for by name

Back dedicated federal research funding, in the US, the Endometriosis CARE Act would direct sustained NIH investment to a condition that affects 1 in 10 and receives pennies per patient. Ask your representatives to co-sponsor it.

EndoFound's advocacy agenda

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