Resources

When it comes to our health, and especially endometriosis, the more we educate ourselves, the better we can advocate for ourselves, and the better we can make decisions about treatment.

The following resources are all ones that I rely on and personally trust. Of course, this list isn’t inclusive of all of the fantastic resources available, but it’s a good starting place to build from.

Scroll down or click each category to be taken directly to that section:

Articles/Research Used in Our Episodes (opens in a new page)

Resources for a multidisciplinary approach to endo (opens in a new page)

*Remember, this is educational information only and not medical advice – always check with your qualified medical professional before making any changes to your diet or treatment plan for endometriosis or any other health problems.

Endometriosis

There is a lot – A LOT! – of misinformation out there about endometriosis. Myths and incorrect information continue to be perpetuated even by doctors and well-meaning endo advocates. That’s why it’s really important to make sure that you get your information from a trustworthy source.

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

Some great resources:

  • Endometriosis: a Complex Disease – Excellent overview of endometriosis from the Center for Endometriosis Care. I highly recommend you 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 endo is, symptoms, diagnosis, treatment, resources, FAQs. They also have a Facebook group to join which has a list of excision specialists worldwide in the Files section of the group. This is where I found my excision surgeon. You can use the search tool in their Facebook group to find past conversations on many topics as well!

  • 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.”

  • EndoMetropolis – Another Facebook group to join. Make sure you check out the Files section for info on treatment, excision, and disease facts.

  • Eighty-Six the Endo – Run by Melissa, a fellow endo 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. Also very active on Instagram.

  • The Endo Girls Blog – Run by Kate and Laura, they are two women with endo who are patient advocates and give accurate info on treatment options and disease facts while also supporting the community. They are very active on Facebook and Instagram.

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

  • iCareBetter – This platform helps connect patients to endometriosis surgeons via a rigorous peer to peer double-blind vetting process for their surgical and excision skills. “With iCareBetter, patients can ensure their voices are represented in the doctor search process. And they will be able to choose their surgeon based on specific case skills and needs, such as thoracic endometriosis, bowel or bladder involvement, diaphragmatic endometriosis, superficial to deep disease, endometriosis-related infertility and more.” Their list of international surgeons is growing as they vet more surgeons!

  • Endometriosis Summit – “Uniting Patients, Practitioners, & Doctors to Move Endometriosis Forward.” On their YouTube page, they have many educational videos with excision surgeons!

  • ExtraPelvic Not Rare – While many doctors state that endo is rarely found outside of the reproductive organs, endo 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 endo, info on the disease by body system, and more.

  • Endo What? – Fantastic documentary about endometriosis with well-researched information and patient experiences.

  • 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 endo I might have been diagnosed sooner!

  • Endo Queer – LGBTQIA+ Led Support for Endometriosis and Similar Illnesses

  • ENDO Black – “ENDO Black, Inc. has a mission of advocating for African American women and women of color affected by endometriosis. We are here to connect you with women who look just like you and who battle with endometriosis just like you. ENDO Black is a safe space for women, to ask questions, to be encouraged, and to receive advice on how to manage the disorder.” They have information, videos, ambassadors, blog posts, events, and more!

  • Check out the Recommending Reading List from the Endometriosis Association of Ireland

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Lupron

This GnRh drug is commonly prescribed by misinformed doctors as a treatment for endo. However, it cannot diagnose, treat, remove, or shrink endo lesions. What it may do is provide symptom management only (although many patients find the drug side effects intolerable). It can also cause long-term, irreversible side effects that many doctors are not discussing with patients, oftentimes because they are not aware of them. Many people who take Lupron later say, “I wish I had known XYZ about Lupron before taking it.” For this reason, we did a five part series on Lupron and Orilissa (an oral GnRh drug that came out in 2018.) These are episodes 30, 31, 33, 37, 39.

If you decide that taking Lupron is right for you, then we hope it provides you symptom relief! However, MAKE SURE TO ADEQUATELY RESEARCH LUPRON TO SEE IF YOU FEEL THAT THE POTENTIAL RISKS OUTWEIGH THE POTENTIAL BENEFITS OF TAKING THIS SERIOUS MEDICATION.

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Orilissa

Orilissa is an oral GnRh drug that came out in 2018. It has been approved by the FDA for the management of endometriosis symptoms. It can have serious long-term side effects, and doesn’t diagnose, treat, remove, or shrink endo lesions. We did a five part series on Lupron and Orilissa. These are episodes 30, 31, 33, 37, 39.

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