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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.
e also need to careful when looking at official endometriosis treatment guidelines, national endometriosis organizations, and campaigns (in various countries) – there are often biases, influences, and hidden agendas we may not be aware of that taint the information provided. National endometriosis organizations (again, in various countries) may be helpful to provide support, local meet ups, lifestyle tips, recipes, etc, but more often than not, their information on endometriosis is outdated, especially when it comes to the cause and treatment of endometriosis.
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.
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.”
- Nancy’s Nook – Incredible “endometriosis learning library”: what endometriosis is, symptoms, diagnosis, treatment, resources, FAQs.
- Endopaedia.info – This excellent website is “a comprehensive, online resource on the origin, diagnosis, and optimal management of endometriosis, and represents the life’s work of world-renowned endometriosis excision surgeon and gynaecologist, Dr. David B. Redwine, M.D.”
- 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, info on the disease by body system, and more.
- Endometriosis: One Step at a Time – “This collaborative program shares information from a variety of experts; no agenda, just truth.” A collection of text and video on a variety of topics endometriosis related, from endometriosis basics to symptom management to emotional support. It’s free, but you need to make a login to access the course, which is under the free starter membership.
- 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!
- 100 Questions & Answers About Endometriosis by Dr. David Redwine, renowned excision surgeon.
- Nancy’s Nook – They have a list of excision specialists worldwide in the Files section of the group. An important note about their surgeon list: The Nook list is NOT a list of top tier surgeons. Not all excision surgeons listed have the same skill level, experience, or treatment philosophies. As their surgeon list grows, there’s also more surgeons on there with much lower or even no skills, which is why it’s vital not to take their list as a guarantee that the surgeon can fully and safely excise your endo. If you choose to use that list, it should be as a tool to gather names of potential surgeons, but you still need to do due diligence to make sure they have the appropriate skill level to treat your case. Some of the surgeons on that list may not have the skill level to excise your endo. Additionally, some patients post reviews of their surgeons on this Facebook group, but there are criticisms that negative reviews are sometimes rejected and not posted by the moderators.
- ExtraPelvicNotRare – Great group for people with extra pelvic endometriosis.
Head to my Instagram and see my story highlight “to follow”. Note: not everyone in that highlight has trustworthy information. I made multiple lists there: (1) excision surgeons, (2) advocates whose accounts are dedicated to sharing trustworthy endo education, (3) people who consistently post about endo. This last group is great for support/validation but may not always be for endo education.