Endo is a Full Body Disease

 

We often hear that endometriosis needs a multidisciplinary approach as it’s a full body disease. Apart from endo being found in 11 different body systems, endo can affect/cause symptoms throughout the entire body.

At the Endometriosis Summit 2021, Dr Iris Orbuch (excision surgeon and co-author of the book Beating Endo: How to Reclaim Your Life from Endometriosis), gave a presentation about the endometriosis domino effect. The first domino is endo, but as we go for years with untreated disease in our bodies, there are more cytokines and chronic inflammation, more structural changes pulling on our anatomy and fascia, more pain modulations, and more nerve fibers can go from endo lesions to the central nervous system. We may start with endo, and over the years the dominoes fall and we then have multiple more diagnoses and symptoms because of endo’s direct or indirect effects on the body. I myself now have SIBO, mast cell activation syndrome, fibromyalgia, interstitial cystitis/painful bladder syndrome, and pelvic floor dysfunction. Not to mention the impact that having endo and any other co-conditions has on our mental health!

What does this mean for us? That even if we are fortunate enough to have excision surgery to remove endo lesions at the root, we may still need to work on other aspects of our health to see more relief. Conversely, even if we can’t have excision surgery at this time, we still may be able to manage/diminish (some or all of) our symptoms, or improve our overall quality of life, by addressing various aspects of our health. (More info on excision in Endo Overview and endo-specific resources here.) 

Pelvic Floor Therapy

The muscles, ligaments, nerves, and fascia can all drive pain, which is why many people with endo find PFT to be helpful or do it as a next step after having excision. PFT may help with vulvodynia, painful sex, constipation/diarrhea, IC/PBS, pelvic pain, leg pain, and more. PFT may include: manual therapy, biofeedback, trigger point release, breathing exercises, connective and scar tissue mobilization, posture correction, and more. It may involve internal as well as external work, but the therapist will get your consent before doing any internal work. There are also wands and other tools, as well as stretches and techniques that they can show you how to use at home to work on your pelvic floor. Patients often have 1-2 sessions per week for 8-12 weeks.

Just like we need to see a specialist in endometriosis and not just any gynecologist for our endo treatment, we need to see a pelvic floor therapist who is familiar with treating patients with endo. Pelvic floor therapy is not one size fits all, and some pelvic floor therapists may not have the knowledge to treat the pelvic floor of someone with endo.

For more info

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Interstitial Cystitis/ Painful Bladder Syndrome

Interstitial cystitis and endometriosis have been called the Evil Twins Syndrome* in patients with chronic pelvic pain (*coined in a 2002 study by Dr. Maurice K. Chung.) Endo and IC can have similar symptoms, and one reliable study showed that about 40% of people with endo also had IC.

The bladder can be a huge driver of pelvic pain. On the other hand, IC isn’t solely a bladder condition, and the bladder has been called an “innocent bystander” in IC by Dr Kenneth Peters, who is the head of Urology at Beaumont University. Bladder and urinary symptoms often have a component from the pelvic floor and autonomic nervous system that need addressing as well. Studies have shown that about 90% of people with IC have pelvic floor dysfunction. So PFD could be causing or exacerbating your urinary symptoms. In fact, the only treatment for IC/PBS that is given an Evidence Strength Grade A by the American Urological Association is manual physical therapy. See pelvic floor therapy above for resources.

Unfortunately, like with endo, IC/PBS is a condition that is full of misinformation, stigma, and doctors who are not often up to date on the latest treatments. The following resources are a wealth of information to learn more on the condition. This can help you be more informed when working with your doctor on treatment options, or even to realize that your doctor isn’t up to date and you’d like to seek a second opinion.

For more info

Related Podcast Episodes

  • Endo’s Evil Twin: Interstitial Cystitis/Painful Bladder Syndrome (coming soon)
  • Interstitial Cystitis/Painful Bladder Syndrome. Part 2 (coming soon)
  • Living with Interstitial Cystitis/Painful Bladder Syndrome. Part 1 (coming soon)
  • Living with Interstitial Cystitis/Painful Bladder Syndrome. Part 2 (coming soon)

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Nutrition/The “Endometriosis Diet”

People with endo often have several food intolerances, and food can cause us pain, fatigue, or flares. Many people follow the “endometriosis diet,” which isn’t actually a specific diet but rather a way of eating (which varies per individual) that focuses on cutting out pro-inflammatory foods and often foods that may raise estrogen as well. Endometriosis is a chronic inflammatory condition, so eating an anti-inflammatory diet can hugely impact how we feel.

While we may decide to cut out foods that commonly contribute to symptoms and pain (examples: gluten, dairy, sugar, processed foods, highly refined carbs), it’s also important to add in a variety of nutrient dense foods such as vegetables, adequate protein, and healthy fats so that we are satiated and have energy. Typically, many people follow an elimination diet over 1-3 months to figure out which foods contribute to their symptoms.

There are many excellent websites, books, and recipes out there available on eating for endometriosis, especially if you browse the books about endometriosis on Amazon.

*Always check with your doctor before making any dietary changes!

For more info

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

  • Mark’s Daily Apple – What I found is that the “endo diet” or eating an anti-inflammatory 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, but rather 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, dairy, 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.

  • 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 eliminates pro-inflammatory foods and common foods that people are sensitive to. Many people follow this for a few months, and then reintroduce foods one at a time to see which ones cause them flares.

  • 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.

Related Podcast Episodes

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Gut Health

Many of us with endo have digestive problems. According to the CEC’s website, they have their patients fill out a pre-operative questionnaire, and here are some statistics: “intestinal cramping and painful bowel movements occur in approximately 25% of patients; constipation occurs in 35% of patients and diarrhea occurs in more than 60% of patients.”

However, we don’t need to have endo on our bowel to have digestive problems (bowel endo is generally found in about 10-15% of people with endo.) There are a variety of reasons we can have digestive problems, from food intolerances, to endo inflammation, to needing digestive enzymes, to co-conditions like Crohns, colitis, gastritis, gut dysbiosis or SIBO. One small study of 50 people with endo found that 40 of them had SIBO. That’s 80%!

For more info

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Hormones

For many of us, our hormones may not be in balance. For example, we may have too little progesterone or too much estrogen. We may have gone through surgical menopause (removal of the ovaries) and now are thinking about hormone replacement therapy. Our hormones are involved in body-wide processes, so if we have too much or too little of a hormone, or our body is having trouble with hormone detoxification, then it can cause us miserable hormonal symptoms.

We often hear that endo is an “estrogen-dependent disease” but this is a bit misleading because it sounds like endo depends solely on estrogen and therefore, if we lower estrogen in the body or stop estrogen, the endo will just disappear. But this isn’t the case, and people in a low estrogen state (be it natural menopause, medical menopause via GNRH drugs, or surgical menopause) can still have disease progression, disease pain, and the lesions don’t just disappear. While estrogen is important to endo, it’s not the only hormone that endo responds to. Progesterone, prostaglandins, and aromatase enzyme are important too, and the interplay of hormones with endo is complex.

A note on estrogen dominance – many websites say that estrogen dominance causes endo or that people with endo are estrogen dominant, but neither is true. While estrogen may increase a person’s endo symptoms (and this highly depends on the individual), high estrogen doesn’t cause endo. Additionally, people with endo can have a range of estrogen values from low to high – having endo doesn’t mean that you have excess/high estrogen or estrogen dominance.

After losing my ovary, I’m now in perimenopause and I’ve been learning that there are many herbs, supplements, and lifestyle habits that can help us balance our hormones and relieve symptoms like PMS, insomnia, aches and pains, fatigue, and hormonal migraines.

For more info

  • Lara Briden – The Period Revolutionary – Great website on hormones from naturopathic doctor and bestselling author Lara Briden. I highly recommend her books Period Repair Manual and Hormone Repair Manual.

  • Dr Jolene Brighten – Great website on hormones from Dr Brighten, who is a Functional Medicine Naturopathic Physician and author of the book Beyond the Pill – A 30-Day Program to Balance Your Hormones, Reclaim Your Body, and Reverse the Dangerous Side Effects of the Birth Control Pill. If you are on hormonal birth control, this is a helpful book.

  • Centre for Menstrual Cycle and Ovulation Research, (CeMCOR) – Website on hormones and HRT by Dr. Jerilynn C. Prior, who is a Professor of Endocrinology and Metabolism (the study of hormones and glands) at the University of British Columbia.

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Functional Medicine/ Naturopathy

When I got diagnosed with mast cell activation syndrome, I began seeing a functional medicine doctor (FMD), and later, I changed that doctor for a naturopath. Seeing a doctor that looks at the whole body instead of each system individually and separate from one another has been one of the best things I’ve done for my health. Between them, they did a comprehensive stool sample, a hormone test, and looked at my body’s methylation and detoxification. With those results, they formulated a protocol (diet, herbs, supplements, and medication) that has helped me immensely with my symptoms. I wish I had known about FMD/naturopathy sooner, and I also wish that I’d taken the plunge to work with a doctor like this sooner.

Prices and insurance coverage can vary for these doctors, as well as their expertise, focus, and experience.

For more info

  • The Institute for Functional Medicine – They provide a comprehensive, searchable network of clinicians in various specialties and healthcare professions.

  • Dr. 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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Mental Health

Living with endometriosis is taxing on us emotionally. Endo symptoms can leave us physically and emotionally exhausted – dealing with the unpredictable nature of our flares and not knowing how we are going to feel from one minute to the next, the medical trauma and gaslighting, the dismissal and lack of support from people around us, the agony of the physical symptoms and what we have to endure on a daily basis, the fear of that PAIN, the grief of all that we’ve lost to this illness, financial concerns for our high medical bills or inability to work, social isolation from being unable to leave the house due to pain, feelings like a burden/bother (which we aren’t at all!) as we need to become increasingly dependent on others for help.

Additionally, people who hold identities that have been historically marginalized can face further trauma. This can come in various forms, such as implicit and explicit biases that medical professionals may hold towards people in terms of race, ethnicity, gender identity and expression, and sexual orientation. It is also important to note that the space of endometriosis advocacy, as well as the treatment space, is predominantly occupied by people who are cisgender, heterosexual, and white. People with different identities can face a lack of inclusion, representation, or even outright discrimination. Navigating a space that feels unwelcoming or others you can take a further toll on a person’s mental health.

Some research has shown that living with chronic pain takes a similar emotional toll as a cancer diagnosis. I say this to show the seriousness of living with the daily onslaught of symptoms/pain that endo can bring. That’s why it’s vital to take care of our mental and emotional health, because living with endo can sink us into a deep sadness, trap us in anger, or completely strip our lives of meaning. All of these are natural reactions to a devastating disease, but it’s important to address how we feel and then work through our feelings so we don’t get stuck in them. I was stuck in my anger for over a decade so I know it’s no easy process. But trying to move towards finding peace (whatever that means to us), finding healthy outlets for our feelings, and working safely through trauma can help us to once more access joy, meaning, and happiness in our lives where we thought there was none.

Many people find it helpful to see a mental health professional, and I truly believe that when we get diagnosed part of our care should be addressing the toll this disease takes on our mental health. At first, I was reticent to address my mental health for a few reasons.

  1. First, I didn’t realize the trauma I was carrying from the years of medical gaslighting or the impact it was having on my daily life.

  2. Second, I didn’t think my anxiety/depression was worth addressing because after been dismissed and gaslit for a decade that I was absolutely convinced that I was broken and inherently flawed (and that was the reason why I was sick). I was sure that nothing could help me so I didn’t even realize that working on my mental health was an option. If you feel this way, please know that we may feel broken, but we aren‘t broken. With the right support and tools, we can see improvements in our emotional state and also the way we feel about ourselves.

  3. Third, like most of us with endo, I’d also been brushed off and told so many times that it was “all in my head” and due to “anxiety” (instead of the doctor actually addressing my endo), so I was concerned that if I did work on my worries, fears, and anxieties, that would somehow negate the physical and mean that my symptoms actually were “all in my head.” But looking at our mental health doesn’t mean that endo is in our heads, because it’s not at all. Endo is a physical disease with lesions in our bodies that shouldn’t be there that are wreaking havoc! In taking a full body approach to addressing this disease, we need to look beyond the physical and also at the emotional and mental toll it takes on us.

In addition to seeing a counselor and journaling, I’ve found changing the way I think about myself and my endo to be extremely helpful to my mental health, so also see the resources I list below under Meditation/Mindfulness.

For more info

Some Great Books

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

  • The Choice: Embrace the Impossible – by Edith Eger
  • A Guide to the Good Life: The Ancient Art of Stoic Joy by William B. Irvine
  • Healing into Life and Death by Stephen Levine
  • The Four Agreements: A Practical Guide to Personal Freedom (A Toltec Wisdom Book) by Don Miguel Ruiz
  • The Happiness Hypothesis: Finding Modern Truth in Ancient Wisdom by Jonathan Haidt
  • Finding Peace with a Devastating Disease – by Amy Corfeli (this is my book!)

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Meditation/Mindfulness

Meditation and mindfulness are practices that have helped me immensely over the years. Living with endo and daily symptoms takes a huge toll on our mental health, and it can feel hard to have any joy. Mindfulness has helped me to live in the moment, which has allowed me to access meaning, joy, and gratitude, and these make living with daily pain just a little less heavy. Meditation has helped me look at my thought patterns and replace them with ones that are more helpful to me. I’ve been working on replacing my self-criticism with self-compassion, my feelings of being a burden and undeserving of love with the understanding that being sick doesn’t make me a burden at all (and it doesn’t make you one either!). All of this has helped me relate differently to my disease, my pain, and my life.

For more info

  • Stay Woke: A Meditation Guide for the Rest of Us – “Whether you’ve tried meditation but it never sticks, or you’ve heard about it but never gave it a shot, Justin Michael Williams guides you step by step in creating a custom meditation ritual that fits in with your busy (and sometimes messy!) modern life. With free downloadable audio meditations every step of the way, Stay Woke gives people of all genders, identities, colors, religions, ages, and economic backgrounds the tools to stop wasting time, overcome self-doubt, and wake up to the lives we were really born to live.”

  • 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, free online summits, and their podcast is my favorite! They also have books, audio, video, and trainings for purchase that they have produced with these experts.

  • Tara Brach – A well-known meditation teacher. Her podcast 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 yoga, meditation, Qigong practices and more with professional teachers. They also have shows/talks on transformation and expanding consciousness, as well as thought-provoking documentaries and inspirational films.

  • 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!

Some Great Books on Meditation/Mindfulness

  • Stay Woke: A Meditation Guide for the Rest of Us by Justin Michael Williams
  • Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn 


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


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



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Chronic Pain

There are many reasons why endometriosis can cause pain in the body – from the lesions themselves to hormones, inflammation, pelvic cross talk, central sensitization, pelvic floor dysfunction, co-conditions, and more. There are also many drivers of pelvic pain, which means that even after excision, we can still have pain if we don’t treat the other sources of pain. Some more common sources may be the pelvic floor and/or bladder, which pelvic floor therapy and other techniques can help with. A person may also have central sensitization and/or an upregulation of the nerves that can continue even after endo lesions are removed. In these cases, the patient may need to work with their doctor on various methods to calm and quiet this upregulation of those systems.

Apart from addressing my pain on a biological level, I’ve been looking for ways to cope with my chronic pain of 17 years, especially after I got gastritis and could no longer take NSAIDs, which were the only medication that even touched that backbreaking pain I got during my flares. These past few years, I’ve been taking a biopsychosocial approach to my pain, which is how pain is now viewed by researchers. Bio = biological, psycho = psychological, social = social.

As mentioned, our pain experience is influenced by the biological, but also by psychological and social factors, such as our support system, our fear, and our thoughts (such as ruminating, catastrophizing, and pessimism) on the pain. At the same time we are addressing the biological side of endo with our doctor, we can also learn ways to address the psychological and social sides. I’ve been using a pain psychology app, but there are also pain psychologists and pain clinics to help us take a rounded approach to our pain. Pain always makes me feel so helpful, terrified, and overwhelmed, and pain psychology programs have helped me to feel more in control and to be less emotionally burdened by my pain. The program hasn’t lessened the physical sensation of my pain, but it has helped me to think less about my pain and to recognize how my stress reaction/fear of the pain puts me into fight-or-flight mode (which ultimately does affect some of my endo symptoms and definitely the mast cell symptoms).

For more info

  • 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.” Not everyone who uses Curable likes it, and that’s ok. It’s important to know that not all of the education is relevant to endo – a lot of it is towards people who have chronic pain with NO structural tissue damage. Endo DOES cause structural damage. Keeping this in mind, Curable has helped me have a better emotional experience when I have pain as well as feel more connected to my body.

Related Podcast Episodes

  • How does Pain Happen in the Body (coming soon)
  • Why Does Endometriosis Cause Us Pain? (coming soon)
  • Endometriosis and Inflammation (coming soon)
  • My Experience with Pain Psychology (coming soon)

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Reducing Toxins

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

For more info

  • 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. 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 eczema/psoriasis, allergies, and mast cell activation syndrome! “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.”

Related Podcast Episodes

  • Reducing Toxins. Part 1 (coming soon)
  • Reducing Toxins. Part 2 (coming soon)

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Histamine Intolerance (HI)/ Mast Cell Activation Syndrome (MCAS)


Getting diagnosed with MCAS (the symptoms of which began a few months after my excision surgery) has honestly crushed my world. Now it’s been 2 years and I’ve managed to lessen my MCAS and HI reactions by working on their root causes. If you are suffering with this, my understanding is that it’s a lifelong condition but many people are able to manage it. I’ve brought my symptoms down from a 10 (anaphylaxes, racing heart, insomnia for days, etc) to a 5. I’ve even been able to introduce moderately histamine foods (in rotation and in moderation) back into my diet. While I still have many triggers, I’m not having a constant reaction to EVERYTHING anymore. MCAS is extremely overwhelming, but by working on the root causes, there is hope.

For more info

Related Podcast Episodes

  • Histamine Intolerance (coming soon)
  • Mast Cell Activation Syndrome (coming soon)

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Sleep

Many of us struggle with sleep due to cortisol dysregulation, pain, hormonal insomnia, MCAS or HI, and more. Not getting enough sleep can increase our fatigue, affect mental health, cause sugar cravings, and even make us more sensitive to pain. Getting deep, restorative sleep each night can make a huge difference in how we feel, although it’s not easy to do when your health problems interfere with your sleep, creating a vicious cycle!

For more info

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