Resources

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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 Education

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 endo 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. I also list more endo resources on my Endo Overview page.

  • Overwhelmed or don’t know where to start? Endo 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. I also 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 which has a list of excision specialists worldwide in the Files section of the group (but as always, make sure to vet any surgeon you find, even if on their list. I link questions on my Endo Overview page in the Treatment section here). This is where I found my excision surgeon.

  • 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 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.

  • 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.

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 endo find it upsetting/triggering to watch, but it’s a great documentary to share with people who don’t have endo 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 endo I might have been diagnosed sooner!

Books

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

Facebook Groups

  • Nancy’s Nook – They have a list of excision specialists worldwide in the Files section of the group (but as always, make sure to vet any surgeon you find, even if on their list. I link questions on my Endo Overview page in the Treatment section here).

  • ExtraPelvicNotRare – Great group for people with extra pelvic endo.

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Endometriosis Support

Endo can be really isolating, and it’s really important to be in community with and have support from people who share similar identities and experiences that we do. Here I list some resources that may be helpful. (Some of these I have read/watched/etc, some I haven’t, so I can’t comment on the accuracy of any endo info given via these links.)

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

  • 2SLGBTQQIA+ RESOURCES – From the Endometriosis Network Canada.

  • 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.”

  • 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 endo related, from endo 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.

  • Not Cha Momma Pod – a podcast: “Join Kailey and Betsy as they share their raw, honest, and personal experiences with endometriosis and adenomyosis diagnoses that led to infertility in their 30s. Despite being kid-free/less, these powerful women are finding joy in the journey and creating a community for fellow warriors who aren’t afraid to address the taboo topics that come along with a chronic illness.”

  • The Cycle – “A podcast about Endometriosis, with a goal not only to share endo stories, but to create a community to help others who are suffering.”

  • ENDO GIRL – a short documentary on Endometriosis – “Brought to life through the medium of dance, the film is shocking, violating and takes the audience on a vulnerable journey, exposing what lies beneath the surface of one in 9 women worldwide.”

  • When I Bleed: Poems about Endometriosis by Maggie Bowyer

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

  • Eighty-Six the Endo Weekly Planner – This planner “was made to help you thrive in all aspects of life, because you deserve to have a tool that can help you tackle life with endometriosis.”

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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