Nutrition/ The “Endo Diet”

Para leerlo en español, clic aquí.

Nutrition/The “Endometriosis Diet”

Endometriosis is a chronic inflammatory condition, and additionally, people with endometriosis often have several food intolerances. Many foods may cause us pain, fatigue, or flares. While there is no such thing as an official “endometriosis diet,” for many people eating an anti-inflammatory diet individually tailored to their needs improves their symptoms and quality of life. Some people also find the AIP diet, low histamine diet, Paleo diet, or some other eating style or combination of these to be helpful. Some people find the low FODMAP diet helpful too, but my understanding is that the low FODMAP diet is a therapeutic diet that is not meant to follow long term, but rather under 2-3 months.

While we may decide to cut out foods that contribute to our individual symptoms and pain (common examples are gluten, dairy, sugar, ultra-processed foods, highly refined carbs, and alcohol), it’s also important to add in a variety of nutrient dense foods such as a variety of 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. It can take time to find what dietary choices make us feel nourished and energized, just as it can take time to figure out what foods may trigger symptoms for us. It can also take time to learn to cook as well as re-find a healthy relationship with food if food has typically been a source of symptoms, and therefore, fear and anxiety.

There are many websites, books, and recipes out there available on eating in an anti-inflammatory way for endometriosis, but remember that there is no correct way to eat with endometriosis. You should eat nutrient dense food that makes you feel good and doesn’t lead to disordered eating patterns. What we eat is very individual and may depend on our health conditions, our access to food, our budget, our community, our culture, our religion, and so much more.

It’s not just about the food

A lot of different foods cause me triggers, but over the years I’ve learned it’s not just about the food itself. It’s also about my relationship with food, which I talk about further down the page, and also little things that are often overlooked:

  • Chewing my food thoroughly to help with digestion.

  • Eating in a state of relaxation: not rushing when eating, not being on the go, sitting down to eat slowly.

  • The way the food is cooked: For example, I can only eat boiled potatoes but not roasted ones. Boiled eggs are fine for me but not fried ones. I can’t have raw vegetables but roasted is fine. Etc.

  • Learning to cook is a lifesaver for people with multiple food intolerances, but it’s also important to find your cooking style. Some people like to spend 3-4 hours in the kitchen and batch cook and freeze all their meals for the week. Others like to cook for each meal. I personally don’t like cooking so since I cook all my food for each meal, I only cook things that have less than 10 min prep time, like roasted veggies or meat.

  • The time you eat and frequency can affect how you feel. Some people feel their best eating 6 small meals a day, others eat 2 big meals. Some find eating a huge early breakfast gives them the most energy, others find that waiting to eat until mid morning is better for them. By paying attention to our bodies and hunger cues, we can find what works best for us.

Diet and lifestyle cannot heal endometriosis

  • Endometriosis can still progress even if we are pain free. Pain going away doesn’t mean our endometriosis lesions went away. This distinction is crucial.

  • The only proven way to remove endometriosis from the body tip to root is excision surgery.

There’s a lot of false claims in our endometriosis community about diet and lifestyle, a lot of assumptions, ableism, healthism, and blame.

It’s all trial and error and looks different from one person to the next

I think diet and lifestyle is a powerful tool that can give us back some agency and control over our health, and for many, it can help us improve our quality of life to some degree. I feel that diet and lifestyle is a necessary component of a multidisciplinary approach to managing this full body disease. But it’s not a cure, nor does it help everyone in the same way. Diet and lifestyle changes may help some people manage their pain, digestive disturbances, fatigue, or other symptoms. Some people can find full symptom relief. Others find none.

Making changes can be very very hard

There is all the time and energy, the meal prepping, the panic when I couldn’t access the food I need, the trial and error, the cost, and the way that different habits had different consequences: like how juicing helped my diarrhea immensely but was terrible for my bladder and blood sugar. Cutting out gluten, dairy, and sugar did wonders for my fatigue and chronic pain, but made it really hard to eat, which affected my mental health, until years later when I finally learned to cook and embraced the idea of cooking my own meals so I stopped feeling so angry and resentful about it.

I think it can also be a double edged sword, because I know in my case, the more I successfully managed my symptoms with diet and lifestyle, the more controlling and rigid I became around my food and habits. While at first it felt empowering, it changed into guilt and self-blame: that I wasn’t trying hard enough, that I shouldn’t have eaten X, etc. It took me a long time to let go of those beliefs.

Let’s not judge others for their diet or lifestyle – or ourselves. We are all doing our best and what our diet and lifestyle looks like can depend on access, privilege, personal preference, finances, feasibility, responsibilities and priorities, time, energy, and more.

When making diet and lifestyle changes, remember that you didn’t cause your illness and it’s not your fault. You’re not sick because you eat X or don’t do enough Y. You’re sick because you have an incurable disease called endometriosis.

Healthism and nutritionism

It doesn’t help either that our society is seeped in healthism, which is the idea that health is entirely a person’s responsibility, and therefore a reflection of their efforts or morals. This belief, and especially its offshoot “nutritionism”, puts a lot of emphasis on the “choices” people make, without accounting for the fact that choices are shaped and restrained by countless aspects that are out of the person’s sphere of control, such as: access, privilege, luck, poverty, systems of oppression, inequities, time, cultural traditions, etc. For example, due to food insecurity or a food desert, someone may need to eat what’s available vs someone with more privilege who actually has the money and access to truly choose what they eat. Someone who works 2 full time jobs may not have the time to exercise daily or get adequate sleep nightly vs someone who only works 40 hours per week.

Healthism and nutritionism can lead to a lot of judgement and blaming, looking down on people, fatphobia and discrimination, disordered eating or obsessive health behaviors, and more.

While it may be helpful to adjust our sleep habits, daily movement, lifestyle, way of eating, etc, there is no right or wrong way to do these. Contrary to statements we might see on social media, it’s individual to each of us, and important to figure what works specifically for us, which often involves trial and error. Some people feel their best doing cardio while others feel their best doing slow movements like Qigong. Some people feel their best on 7 hours of sleep while others need 9. Some people find gluten makes them feel sick while others can eat huge amounts of it with no problems.

For years, I was really obsessive with my health and super rigid with my routines and choices, with self-blame and judgement at the forefront. Today, I’m still pretty strict about what I do as my symptoms are severe and very strongly linked to my way of eating and living, but my approach is now one of loving and understanding, without self-blame, fear, or guilt – which has done wonders for my mental health. I do my best, knowing that my best is different from another person’s best, and that my best will be different from day to day, because taking care of myself in the specific ways that work for me often involves time, energy, effort, money, access, etc, that sometimes I just don’t have. My best has also changed over the years, as I gain knowledge and experience with my individual body. I understand there is no “perfect”. In fact, there’s not even a “right” and “wrong” way for myself: sometimes I do everything “right” and I still flare. Why? Because I have endometriosis and several other health conditions.

“Healing endometriosis”

Apart from healthism, we often see messages from coaches that we can heal our endometriosis if we change our lifestyle and way of eating. Endometriosis has no cure, and managing symptoms or even becoming asymptomatic is not the same is healing from a disease. While some of us may be able to improve or manage our symptoms through lifestyle and eating, others won’t have such great results. This isn’t because we aren’t doing it right, or aren’t trying hard enough, or are failing, but because endometriosis is a complex, challenging, incurable disease that needs a multidisciplinary approach with excision surgery as the cornerstone for a person to see the most relief in their symptoms and best improvements to their quality of life.

There are all kinds of statements out there blaming us for our illnesses or state of health, and it’s easy to internalize those messages too. So I just want to tell you right now that it’s not your fault that you have endometriosis. It has never been your fault, and it will never be your fault. There is nothing that you could or could not do to have or not have this disease.

For more info

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

  • 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.

  • Mark’s Daily Apple – I’ve found that 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, 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, added sugar, ultra-processed foods, and industrial seed oils. I’ve relied heavily on recipes and encouragement from the Paleo/ancestral health community to help me stick to my chosen way of eating.

  • Abby Langer Nutrition – Great blog posts from registered dietitian with sound no BS advice!