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Remember, the information on my website, podcast, Instagram, and any other ways I communicate and/or produce content is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan for endometriosis or any other health problems. See my full disclaimer here.

Endometriosis Education

There is a lot of misinformation out there about endometriosis. Myths and incorrect information continue to be perpetuated by national organizations, awareness campaigns, medical websites from prestigious hospitals, medical textbooks, well meaning doctors, self-proclaimed endometriosis “specialists”, national leading bodies like ACOG/RANZCOG, endometriosis guidelines, endometriosis advocates, and research studies.

That’s why it’s really important to make sure that you get your endometriosis education from a trustworthy source. The following resources are all ones that I rely on and personally trust for accurate information. Of course, this list doesn’t include of all of the fantastic resources available, but it’s a good starting place to build from.

  • Overwhelmed or don’t know where to start? Endometriosis overview here.
  • Looking for an excision surgeon? Treatment overview and resources here.

Some great websites

  • Endometriosis: a Complex Disease – Excellent overview of endometriosis from the Center for Endometriosis Care. Also explore their online library of resources on endometriosis! “Led by internationally renowned endometriosis expert Ken Sinervo, MD, MSc, FRCSC, ACGE, the CEC is a global leader in the care and treatment of the disease.”

  • Endometriosis: One Step at a Time – Free endometriosis course by 2 amazing advocates. “Learn the FACTS from top endometriosis healthcare providers, excision surgeons, and advocates, and how to identify false information so that you can be empowered to make the best decisions for YOU.”

  • Nancy’s Nook – Incredible “endometriosis learning library”: what endometriosis is, symptoms, diagnosis, treatment, resources, FAQs.

  • Eighty-Six the Endo – Run by Melissa, a fellow endometriosis warrior and registered nurse, she shares “endometriosis education, tips, nutrition info, and the raw reality of what it means to have endometriosis.” Some highlights of her website: How she got insurance to approve her excision surgery and a printable list of questions to ask your excision surgeon.

  • The Endo Girls Blog – Run by Kate and Laura, they are patient advocates with endometriosis and give accurate info on treatment options and disease facts while also supporting the community. Most active on Instagram

  • Pacific Endometriosis and Pelvic Surgery – Easy to understand articles on endometriosis in the Education section.

  • ExtraPelvic Not Rare – While many doctors state that endometriosis is rarely found outside of the reproductive organs, endometriosis on the intestines, bladder, lungs, diaphragm, and other locations is actually not as rare as we have been lead to believe. This website has educational videos on extrapelvic endometriosis, a downloadable e-book, info on the disease by body system, and more.

Videos

  • Endometriosis Summit YouTube Page“Uniting Patients, Practitioners, & Doctors to Move Endometriosis Forward.”

  • Endo What? – Fantastic documentary about endometriosis with well-researched information and patient experiences. Some people with endometriosis find it upsetting/triggering to watch, but it’s a great documentary to share with people who don’t have endometriosis to help them understand it.

  • Endo What? – School Nurse Initiative – You can send an endometriosis toolkit to educate school nurses to the schools of your choice. I sent one to my high school. I spent so much time in the nurse’s office in my senior year – if they had known to recognize the obvious symptoms of endometriosis I might have been diagnosed sooner!

Books

  • 100 Questions & Answers About Endometriosis by Dr. David Redwine, renowned excision surgeon.

Facebook Groups

Podcasts

  • In Sixteen Years of Endometriosis – Great source for endometriosis education and interviews with excisions surgeons and patient advocates. (Note: This is my podcast!)

Instagram

Head to my Instagram and see my story highlight “to follow”. I made multiple lists there: (1) excision surgeons, (2) advocates whose accounts are dedicated to sharing trustworthy endo education, (3) people to follow for nutrition, pelvic pain, disability, etc.