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Endometriosis 101: A Reading List

When I first suspected that I might have endometriosis, I felt adrift. After all, endometriosis remains a misunderstood condition.

Many people feel the pressure to remain silent about menstrual pains because of period stigma. So when I started trying to understand more about my symptoms, I didn’t always know where to turn.

After all, I couldn’t enroll in an Endometriosis 101 class to get a reading list. Even if you don’t have a syllabus to give you all the answers you need about endometriosis, you can find resources to help point you in the right direction.

Reading about others with endo can help you feel supported

Having endometriosis can be a lonely experience, but patients can find solidarity when they see their condition represented in pop culture and in literature.

In this reading list, you’ll learn that you’re not alone. Some of these authors have struggled with their own cases of endometriosis, and others are researching new treatment options.

Together, these writers all imagine a better future for endometriosis patients.

Essential reading for those with endometriosis

Poems:

  • When I Bleed: Poems about Endometriosis
  • “Endometriosis" by Katrina Harms
  • Three poems: “Endometriosis and Perspective,” “Endometriosis Haiku,” and “Resilience” by Fiona Stevens
  • “Ode to Endometriosis” by Gwen Walsh
  • “Endometriosis” by Tonileigh Ratchford
  • “The Fight" by Carrie Gaines

Online articles and editorials:

  •  “Stories of Women Living with Endometriosis”- She Defined
  • “My Body, My Pain: Listen to Me and All Black Women”- The Root
  • “Why Are We Still Dismissing Girls’ Pain?”- The New York Times
  • “‘Am I Crazy?’ A Black Woman’s Journey With Endometriosis”- The Black Wall Street Times
  • “Frustrated endometriosis patients fuel surge in activism while seeking answers”- The Philadelphia Inquirer
  • “14 People On How They Were Diagnosed With Endometriosis”- BuzzFeed
  • “Black Women and Endometriosis”- The Miami Times
  • “Doctors Dismissed Her But She Turned Out To Be Right After Years of Needless Suffering”- The Washington Post
  • “Pain and the power of activism”- Wellcome Collection
  • “They Call It a ‘Women’s Disease.’ She Wants to Redefine It."- The New York Times
  • “Stop Gaslighting Women about Endometriosis”- U.S.News
  • “‘It was a matter of social justice:’ endometriosis activist Sylvia Freedman on a year of driving change”- The Guardian
  • “Who Decides to Get a Hysterectomy?”- Teen Vogue
  • “The Experts Weigh In: Is Hysterectomy an Effective Endometriosis Treatment?”- Endometriosis Foundation of America
  • “Period Stigma Isn’t Just Frustrating: It’s Dangerous”- Refinery29
  • “A Menstrual Expert’s Surprising Tips On How To Talk About Your Period”- NPR
  • “Endometriosis: Three Reasons Care Still Hasn’t Improved”- The Conversation

Medical articles and journals:

  • “Endometriosis: Epidemiology, Diagnosis and Clinical Management”- Current Obstetrics and Gynecology Reports
  • “Clinical Diagnosis of Endometriosis: A Call to Action”- American Journal of Obstetrics and Gynecology
  • “Endometriosis: Current Challenges in Modeling a Multifactorial Disease of Unknown Etiology”- Journal of Translational Medicine
  • “Optimal Management of Endometriosis and Pain”- Obstetrics and Gynecology
  • Articles in Journal of Endometriosis and Pelvic Pain Disorders
  • Special Issue on The Impact of Endometriosis on the Health of Women in 2016- BioMed Research International
  • “Satisfaction with Medical Support in Women with Endometriosis”- PLOS ONE
  • “Experts: Research Gap Stalls Improvements in Endometriosis Care”- The University of Michigan Medicine Health Lab online
  • “Disparity in Endometriosis Diagnoses between Racial/Ethnic Groups”- BJOG
  • “Influence of Race/Ethnicity on Prevalence and Presentation of Endometriosis: a Systematic Review and Meta-Analysis”- BJOG

Books:

    Pain and Prejudice: A Call to Arms for Women and Their Bodies by Gabrielle Jackson
  • Pain and Prejudice: How the Medical System Ignores Women -- And What We Can Do About It by Gabrielle Jackson
  • Rewired Life: A Journey to Untangle Chronic Pain and Endometriosis by Audrey Michel
  • Surgical Menopause: Not Your Typical Menopause by Helen Hemp
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Norman
  • Outsmart Endometriosis: Relieve Your Symptoms and Get Your Career Back on Track by Jessica Drummond
  • The Doctor Will See You Now: Recognizing and Treating Endometriosisby Tamer Seckin, MD
  • Vagina Problems: Endometriosis, Painful Sex, and Other Taboo Topics by Lara Parker
  • The Endometriosis Self Love Journal by Chelsea Bri Blackburn

Do you have any additional reading suggestions to add? Put your recommendations in the comments below.

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