Resources

Knowledge is power, especially when it comes to living with endometriosis. The more we know, the better decisions we can make, the better we can advocate for ourselves, the better we can weigh the risks vs benefits of new treatments!

The following resources are all websites, books, products, etc, that I have used/read and personally trust. This list isn’t inclusive of all of the fantastic resources available worldwide – these are just ones that I have used/read and rely on myself.

I will continue to update these resources as I discover new ones!

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

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.

I’ve put together here a basic overview of endometriosis. Two important episodes we did to help dispel myths on endometriosis that we recommend you check out are: Episode 12 – Common Endometriosis Myths, and Episode 16What Effectively Treats Endometriosis.

We strive on the podcast to make sure that all of our information is accurate. The following are all pages that I use frequently to gather information and research on endometriosis. There are many more resources available, so this is by no means a complete list, but these are resources that I personally rely on.

  • Center for Endometriosis Care – “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.” I highly recommend you explore their online library of resources on endometriosis!

  • Endometriosis: a Complex Disease – Excellent overview of endometriosis from the CEC.

  • 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.”

  • Nancy’s Nook – They have both a website which serves as a growing “endometriosis learning library” and also a Facebook group to join. By far the best place to learn about treatment options and excision surgery for endometriosis. There are a wealth of self-learning files to explore as well as a list of excisions specialists worldwide. 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!

  • EndoMetropolis – Another Facebook group to join with accurate information, files, and great discussion on treatment, excision, and disease facts. You can use the search tool to find past conversations on many topics as well!

  • 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 – They have easy to understand articles on endo in the Education section.

  • 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.

  • 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.” They have some great videos in their Video Library.

  • ExtraPelvic Not Rare – While many doctors state that endo is rarely found outside of the pelvis (here pelvis actually means the female reproductive organs), such as on the intestines, bladder, lungs, diaphragm, and other locations, it 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!

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Articles/Research Used in Our Episodes

For much of the research for our podcast, I rely on the resources listed in the section above on Endometriosis to obtain accurate information, so definitely explore them! In this section, I will put key resources used in the episodes (not all though, since many are listed above already), in case you want to find a specific study or article we mentioned in the episode. These are also great to browse and learn more about endo as well! I will update with each new episode when it airs!

Ep 3 – 9 Tips for Better Medical Care

  • Full show notes to this episode here.

Ep 7 – Period Shame, Endoflares, and Social Stigma

Ep 15 – What Causes Endometriosis?

  • Endopaedia.info – Origin – Here you can find several links on theories of origin, including Mulleriosis, Sampson’s theory of retrograde menstruation, and HOX genes.

Ep 19 – Endometriosis and the Workplace

  • FMLA – Family and Medical Leave Act. If in the United States, you may be able to protect your job by putting this in place to take time off for surgery or to miss periodic days throughout the month due to flares.

Ep 22 – Bowel Endometriosis

Ep 35 – Endo, IBS, and Digestive Problems. Part 1

Ep 38 – Understanding the Types of Endometriosis

Ep 41 – Improving Gut Health

Ep 45 – Racial Bias in Healthcare

Sources:

Resources:

  • Not Defined by Endo – A podcast on endometriosis in which Teniola Ongunro (who co-hosts this episode on racial bias with me) interviews endometriosis specialists and advocates. Topics have included infertility, painful sex, pelvic pain, PCOS, nutrition, and more. Not all the episodes are currently on her website, so definitely check it out in your favorite podcast app!

  • ENDO Black – “A platform that was designed to connect women of color affected by endometriosis together. The goals are: to create a safe atmosphere for those affected by endometriosis; to foster endo-sisterly love across the globe; and to facilitate opportunities for constant dialogue on the topic of women’s reproductive health for African American women and women of color, as well as policies, laws, and regulations that affect women and their reproductive health.” They have information, videos, ambassadors, blog posts, events, and more! Also on Instagram.

  • Myths and Misconceptions Perpetuating Racism in Endometriosis, Infertility, and Pelvic Pain. – Fantastic article which features several Black womxn and their experiences and advice on navigating endo. The article has links to all of their platforms on social media, so you can follow them, as well as links to the two videos of the in depth discussions they had together on these topics, the content from which the article is based upon.

  • Black Man in a White Coat Book by Damon Tweedy

  • Ted Talks: The Link Between Health and Racism – There are several videos here on racism and health care.

  • White Fragility: Why It’s So Hard for White People to Talk About Racism Book by Robin DiAngelo.

Ep 46 – Why Science Knows Less About the Female Body

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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Functional Medicine

  • Chris Kresser – Dr Kresser is a functional medicine doctor and avid researcher. He provides evidence-based information on all kinds of health topics. I rely heavily on this site to learn, especially about gut health. Don’t miss his free downloadable e-books on various topics.

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Nutrition/ Endo Diet

We talk often on the podcast about how food can really influence the way we feel since it causes chemical reactions in our body. Many people follow the “endometriosis diet,” which isn’t a diet per say but rather a way of eating (and it varies per individual) that focuses on cutting out pro-inflammatory foods. Endometriosis is a chronic inflammatory condition, so eating an anti-inflammatory diet can hugely impact how we feel. There are many excellent websites, books, and recipes out there available on eating for endometriosis.

What I found is that the “endo diet” is VERY similar to the Paleo/ancestral health diet. To clear up any misconceptions, the Paleo diet isn’t about gorging yourself on meat (I actually don’t eat either red meat nor pork). It’s about clean eating, eating local, avoiding pesticides, choosing high quality meat (should you eat meat), eating a wide array of vegetables, nuts, and seeds while avoiding pro-inflammatory foods like gluten/grains, sugar, packaged foods, and industrial seed oils.

I have relied very heavily on information from the Paleo/ancestral health community to help me navigate my dietary choices and understand the science behind how food influences how I feel!

  • Nutrition for Endometriosis – Written by Erin Luyendyk, RHN, and on the CEC’s website.

  • Mark’s Daily Apple – This website is about ancestral health (also known as living Paleo). Don’t worry if you are a vegetarian/vegan – you can still find excellent info on this website about intermittent fasting, vitamins & supplements, the science of how food affects the body, exercise science, recipes for anti-inflammatory meals, and motivational success stories of how anti-inflammatory living helped many manage their symptoms, increase their energy, and just overall feel better! Mark is one of the prominent thought leaders of Ancestral Health and also the founder of the Primal Kitchen food line (with their delicious and healthy mayonnaise and ranch dressing!)

  • Whole 30 – This can be a great way to jump into an elimination diet, with resources, community, and support. This program removes many pro-inflammatory foods for 30 days. Then when you start to reintroduce them one at a time into your diet, it’s oftentimes much easier to pinpoint what foods trigger flares for you.

  • Is the Autoimmune Protocol Right for You? – Outline to the AIP diet, which is another method of elimination of pro-inflammatory and common foods that people are sensitive to, and then reintroducing them one at a time to see which ones cause you flares.

  • Low FODMAP diet – Has been helpful to many people with IBS or SIBO. May be worth researching if you have digestive problems.

  • Endometriosis in patients with irritable bowel syndrome: Specific symptomatic and demographic profile, and response to the low FODMAP diet – Research study.

  • Is a Low-FODMAP Diet Best for Digestive Disorders?– Article by Chris Kresser.

  • Specific Carbohydrate Diet (SCD) – Has been helpful to some people with Inflammatory Bowel Disease. May be worth researching if you have IBD.

  • My Heart Beets – Incredibly delicious recipes for Indian food, and you can customize the recipe list to find recipes that are vegetarian, vegan, Paleo, nut-free, gluten-free, or other eating preferences. Most of the food I make is from this website!

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Clean Living/ Toxin-free

Many toxins and chemicals we are exposed to daily are endocrine disruptors, so they can affect our hormones and endometriosis symptoms.

  • Environmental Working Group – Excellent resource for consumer guides and information on chemicals and toxins that we are exposed to daily. They rank US skincare products, cleaning products, soaps, detergents, shampoos, lotions, etc. They have lists about pesticides on produce, like the Dirty Dozen. They also have information on US tap water (and once you find out what’s in your water, you may be horrified – I was! – and want to buy a water purification system. The one I use is listed below.)

  • Berkey Filters – Water purification system that outperforms most filters on the market. I’ve always been concerned about the food I put in my body and the products I put on my skin. One day I realized that the water I put in my body should be chemical-free as well! This filter system has a higher upfront cost but since the filters don’t need to be changed for a long time depending on your water usage (mine need to be replaced every 5 years), the cost per gallon is actually much lower than cheaper filters that need to be replaced often. My tap water tasted terrible and really irritated my IC, after switching to Berkey filtered water my IC flares have gone down!

  • Chagrin Valley Soap and Salve – Great for skin problems like eczema/psoriasis, allergies, and histamine intolerance! “Chagrin Valley Soap & Salve is a small family owned and family operated company dedicated to crafting high quality, healthy and effective skin and hair care products that will nourish your skin and be kind to our planet…Our ingredients are USDA certified organic, sustainably produced, cruelty-free and ethically traded. We will always use the best ingredients to make the best safe and effective skin care products available.”

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Meditation/ Mindfulness

  • Greater Good in Action – Excellent website from the The Greater Good Science Center at the University of California, Berkeley. It has in-depth articles and short 5-15 minute practices on topics like happiness, compassion, self-acceptance, gratitude, mindfulness, intention, forgiveness, etc.

  • Sounds True – Mindfulness, meditation, psychology, relationships, self-compassion, subtle energy from well-known experts in the field. There are free trainings, online summits, and their free podcast is my FAVORITE weekly podcast. They also have books, audio, video, and trainings for purchase that they have produced with these experts.

  • Tara Brach – A well-known meditation teacher. I’m a huge fan of her podcast, which is a collection of all of her talks spanning back almost 10 years.

  • Vipassana Meditation – 10 day silent meditation retreats. They are free (donations encouraged), run by volunteers, and have locations all over the world. I’ve done 3 retreats and highly recommend. They teach you how to meditate and while it is hard to be 10 days in silence, you can learn a lot about yourself. I’ve had major personal breakthroughs on these retreats, and because they teach you to sit with body sensations, Vipassana has helped me learn how to live with chronic pain.

  • Gaia – Huge online collection of videos of yoga, meditation, Qigong practices with professional teachers. They also have shows/talks on transformation and expanding consciousness, as well as thought-provoking documentaries and inspirational films. It’s kind of like Netflix but for mindful TV! You can get a free one week trial to see if you like it.

  • Qigong – This is a wellness practice that is hundreds of years old used for health. It involves slow movements done in rhythm with the breath, and it’s usually done standing up or sitting. It can be a great low impact exercise option for people with fatigue or pain. It’s often used for health, healing, and martial arts training. It can have benefits such as increasing energy, relieving stress and anxiety, and stretching the body. My favorite teacher is Lee Holden, who describes qigong as “the art of effortless power”. I do his 20 minute morning routine a few times a week!

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Chronic Pain/ Mind-Body Medicine

The science of how the body feels pain is fascinating. The brain can “learn” pain signals which means it can unlearn them as well. Our central nervous system may become upregulated and fire pain signals more frequently than before in response to less stimuli. How we feel pain can be influenced by stress, fear, and our thoughts on the pain. I am a huge fan of mind-body medicine, but it’s important to know that it cannot cure endometriosis. It may help with your pelvic pain or other symptoms if they are caused by Mind-Body Syndrome, but it most likely will not if that isn’t the cause.

In my own case, mind-body medicine helped immensely with my severe digestive symptoms, but my debilitating pain episodes did not lessen or disappear at all. I was only rid of this pain once I had excision, which removed endometriosis at the root and undid the structural damage in my body from the endo (the adhesions pulling on organs and causing them to fuse together, the high levels of inflammation from the foreign tissue, the muscular distortion, the partial bowel blockage, etc)

Even if you use one of these programs and still have pain, I have found them excellent resources for working through tension, stress, repressed emotions, and learning to think differently about our pain and symptoms. We will also have an upcoming podcast episode on this complex topic of mind-body medicine and once we do I will link it here.

  • Curable – an online pain psychology program that “helps you understand why you have pain, why it persists, and guides you through you science-backed strategies to help you heal.” I actually haven’t used this app, but many of my friends with endometriosis have used it and had success. The app also has incredible testimonials. There is information on their page about the science of pain and their Instagram page has excellent content.

  • Dr. John Sarno – Now deceased, he was a specialist in rehabilitation medicine at NYU Medical Center, and one of the first pioneers of mind-body medicine. If you look him up on Google or YouTube you can find explanations of his work. He also has several books, one of which I linked in my recommended book section below. Here is a short article explaining his work.

  • Unlearn your Pain – Dr. Howard Schubiner is a protege of Dr. Sarno. I haven’t used his mind-body program, but I’ve heard many of his interviews. The resources on his website explain what mind-body syndrome/Tension Myositis Syndrome is and there is also a worksheet to help you decide if you might have it.

  • The Cure for Chronic Pain – Nicole Sachs LSCW is another protege of Dr. Sarno. I’ve only listened to her podcast and seen her Youtube videos, but I haven’t done her course. Many people have had success with her resources and shares their stories on her podcasts and others.

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Histamine Intolerance (HI)

  • Healing Histamine – This website was a lifesaver to me when I first got diagnosed with HI and was completely lost.

  • Overview of Histamine Intolerance – Good overview by Dr Janice Joneja, a world expert on HI.

  • Histamine Food List – On this website, you can download a very comprehensive food list that ranks if the food is usually tolerated or causes minor, moderate, or severe symptoms for those with MCAS or HI.

  • A Practical Guide to Living with Mast Cell Activation Syndrome – Although this is about living with Mast Cell, it’s applicable to HI. This blog post talks about soaps, cleaning products, clothes, chemicals, water, and other common triggers for people with Mast Cell (and HI).

  • Histamine Intolerance – Blog post from Mark’s Daily Apple that gives an overview of what HI is and what to do about it.

  • Estrogen and Histamine – Quick overview of how estrogen affects histamine.

  • HER-stamine? The Link Between Histamine and Estrogen – Quick overview of how estrogen affects histamine.

  • Stool Sample/ Hormone Test – Definitely do more research, but from what I’ve read and from my own experience with the onset of HI, often times HI is linked to gut dysbiosis (an imbalance of gut bacteria) or changes in hormone levels. Many people (myself included) have found that seeing a Functional Medicine doctor or Naturopath – one with experience in HI – can help balance the body and diminish or eliminate HI. I wish I had found this out sooner! So many websites just focus on avoiding triggers, especially dietary ones, but fail to mention that by addressing the root cause, one may be able to heal from their HI. In my own case, it turned out I had both an overgrowth of opportunistic (bad) bacteria and a hormone imbalance. After resolving both of these with the protocol of my doctor, I reduced my symptoms (anaphylaxis, racing heart, insomnia, migraines, joint pain) by about 90% in just three months, and have been able to reintroduce (in moderation) many high histamine foods. Many of the websites and support groups I frequented painted a rather dismal picture of HI, but there is hope! Histamine intolerance can be influenced factors such as your adrenals, hormones, gut bacteria, stress levels, and histamine intake via food, chemicals, and lifestyle. Addressing the root cause for you as an individual can help you to feel better!

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Books That Influenced Me

If you listen to the podcast, you know that we often mention books we’ve read. Books are powerful. They help us learn in detail about a subject or explore more deeply into ourselves. The following books are ones related to endo, health, illness, well-being, mindfulness, inspiration, bias in medicine, and more. I’ve read all of these books and they have influenced me greatly in this journey to live better and find happiness with endo.
 
Click on the book cover to be taken to its page on Amazon. These are affiliate links which means that I make a small amount off of your Amazon purchase of the book, at no cost to you. Consider buying through these links as a way to help support our podcast! 🙂

You can also check out your local library to see if they carry these books, and you can borrow them for free! (Plain text list of the books is below the icons.)

You also may want to check out the Recommending Reading List from the Endometriosis Association of Ireland.

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Here is a plain text list of the book icons above:

    • Beating Endo: How to Reclaim Your Life from Endometriosis Hardcover by Iris Kerin Orbuch MD, Amy Stein DPT

    • 100 Questions & Answers About Endometriosis by David B. Redwine

    • Full Catastrophe Living (Revised Edition): Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn

    • The Mindbody Prescription: Healing the Body, Healing the Pain by John E. Sarno M.D.

    • Unlearn Your Pain by Howard Schubiner M.D, Michael Betzold

    • Welcoming the Unwelcome: Wholehearted Living in a Brokenhearted World by Pema Chodron

    • Healing into Life and Death by Stephen Levine

    • Anatomy of an Illness: As Perceived by the Patient by Norman Cousins

    • Atomic Habits: An Easy & Proven Way to Build Good Habits & Break Bad Ones by James Clear

    • The Happiness Hypothesis: Finding Modern Truth in Ancient Wisdom by Jonathan Haidt

    • Man’s Search for Meaning by Viktor E. Frankl

    • Radical Acceptance: Embracing Your Life With the Heart of a Buddha by Tara Brach

    • Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life by Jon Kabat-Zinn

    • Search Inside Yourself: The Unexpected Path to Achieving Success, Happiness (and World Peace) by Chade-Meng Tan, Daniel Goleman, Jon Kabat-Zinn

    • The Miracle of Mindfulness: An Introduction to the Practice of Meditation by Thich Nhat Hanh

    • Silence: The Power of Quiet in a World Full of Noise Paperback by Thich Nhat Hanh

    • Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery

    • The Biology of Belief 10th Anniversary Edition: Unleashing the Power of Consciousness, Matter & Miracles by Bruce H. Lipton

    • The Power of Now: A Guide to Spiritual Enlightenment by Eckhart Tolle

    • The Four Agreements: A Practical Guide to Personal Freedom (A Toltec Wisdom Book) by Don Miguel Ruiz

    • A Guide to the Good Life: The Ancient Art of Stoic Joy by William B. Irvine

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