EndoWhat New England Premiere

We all know that endometriosis is physically invasive, but the reality is, endometriosis invades all aspects of our lives. Many patients experience the debilitating symptoms of endometriosis from the start of menstruation through menopause. This means that patients can spend up to 40 years of their lives dealing with a painful, chronic disease. Being in physical crisis for so many years has a profound impact on not only the relationships patients have with others, but most importantly, it can affect the way patients feel about themselves.

Patients and loved ones who are here today know that endometriosis is pervasive and can have a significant impact on the family unit, school experience, the ability to acquire and maintain employment, friendships and of course romantic relationships.

Endometriosis can be an isolating disease and patients desperately need a positive, healthy support system to thrive. When endometriosis patients do not feel supported in a relationship, tension starts to develop within that relationship. While there could be many reasons for a lack of support, I think it is important to understand on a sociological level why other diseases and illnesses rouse more compassion and support than endometriosis does at this time.

We all know there is a lack of awareness for this disease. Too many people still do not understand what we mean when we say we have endometriosis is the same way that they understand breast cancer or diabetes. The burden of proof is on the endometriosis patient to explain and sometimes even try and convince emergency room staff, employers and even family members that their symptoms are real and that their pain is real. This is exhausting and discouraging for patients.

There is a collective, intuitive social knowing of what to do when we hear a loved one has breast cancer and is undergoing chemo, or if your nephew has his tonsils out or even if you knew your elderly neighbor had the flu. We as a community know how to appropriately rally around the individual or family unit in their time of need. Part of why this doesn’t happen for endometriosis patients is the lack of awareness, but I also think it is because there is a still a social taboo around women’s periods and reproductive health issues. The breast cancer advocacy community did a phenomenal job removing social taboos so that now businesses, politicians and even football players will rally around patient health care needs. We have a lot of work to do to raise the awareness and understanding of endometriosis in society.

I know this is seems a bit bleak! 40 years of pain that no one understands! There is hope and ways to make change to strengthen support and relationships.

I love Ghandi’s quote, “Be the change you want to see in the world.” Change starts as an inner journey for patients. I work with patients to accept that they have a chronic illness that causes pain and fatigue. This is a really hard process that is an ongoing challenge. Endometriosis patients are fierce and determined. We don’t want to be sick! But, coming ot terms with endometriosis and all that comes with it helps patients to become advocates for their own needs within their different psychosocial systems, family, school work ect…

Next, patients have the exhausting task of educating those around them. Kudos to patients who brought their loved ones today and kudos to the loved ones that came! Loved ones, KEEP coming to events, check out some of the amazing resources online , including the CEC website which was mentioned already as well as the online private support groups.

And the work doesn’t end there. It is one thing to know something on an intellectual level, but we have these pesky feeling that complicate matters. I encourage patients, as well as their loved ones, to go talk to a mental health professional for support.

One reason to go seek extra support is that having a chronic illness is a loss. For some patients who struggle with infertility on top of endometriosis, there is even more to grieve. But, parents and spouses of patients also suffer loss. It is incredibly difficult to watch your teenager struggle with such a debilitating disease. For spouses, there may be the challenge of fertility as well, but there is also social isolation, caretaker fatigue, loss of intimacy and maybe even an extra financial burden on the relationship.

Another reason to seek support is that we all have defense mechanisms that we are not aware of. Some of these coping strategies may be causing undue stress on your loved one who is already carrying the burden of endometriosis. Ask yourself these questions: How do you react when you are fearful or anxious? How do you react when you feel fearful or powerless? Do you get angry or defensive? Do you try to control the situation? Are you a doer? Are you a diehard optimist? Do your coping mechanisms support the patient or cause more tension?

Also, it is important for both patients and loved ones to examine which biases and coping strategies were taught to them growing up. When you were little and got really hurt, were you told to shake it off? Were you allowed to take time to be sick? Did you have good role models for self-care? Endometriosis patients not only need to be allowed to be sick, but they need to make rest and self-care a priority. Patients need to learn to be their own advocates for self-care, but they need loved ones to support and encourage these needs within the family unit.

I want to take the time to thank all of the health care professionals who came today. Your relationships with your patients have a significant impact on their physical and emotional wellbeing. How you treat your patients and their pain can directly affect their self-image and self-esteem. That is why it is vital that you are also aware of your own defense mechanisms and your own biases.

As a patient myself and as a mental health provider for patients, I know intimately the frustrations of the disease. I can only imagine that treating endometriosis as a physical is also difficult and frustrating. There is a reason why “enigma” is in the title of today’s event. I am sure treating this disease can leave you feeling helpless and powerless. How do you react to feeling helpless? When this disease makes you feel unsure or maybe even inadequate at times, how do you react? DO you get angry or defensive? DO you have a hard time referring out or asking for another opinion when you have exhausted all the options you are aware of? Can you admit it when you have made a mistake? Do you have any biases towards or patients in chronic pain?

These are tough, yet essential questions to reflect on. The more self-aware you are, the more capable you will be at providing a strong support system for endometriosis patients.

In closing, I truly believe that healthy relationships with others starts with a healthy relationship with ourselves and an acceptance of our disease. When we love and accept ourselves we are less likely to get hurt by others who don’t understand. I tell my patients to try and “excise” all of the unhealthy relationships out of their lives and in doing so it will reduce stress and inflammation!

I want you to take a look at this beautiful woman! Can you tell that last night she was in the emergency room because of endometriosis.  Absolutely not!

 

Now take a look at her. Many patients feel like barbed wire is wrapped around their pelvis.

If doctors, nurses and other healthcare professionals saw this patient, would they tell her that her pain isn’t real?

If Teachers and School Administrators saw this young woman, would they admonish her for not handing in a paper on time or not being able to participate in gym class?

Spouses, take a look at this woman. Do you think her inability to be intimate with you has to do with her not being attracted to you or that she doesn’t love you?  No, it is because she is in horrific pain.

Now patients, if you were friends with this woman, this woman with the barbed wire strangling her pelvis, would you berate her for falling asleep after a long day at work and missing the party? Would you shame her for not doing the dishes or keeping her house clean?  Would you make her feel less than for gaining weight?

Absolutely not!  You would have compassion and show empathy. You would be kind. Patients, you need to be kind to yourself. Sometimes the voice inside our heads is the worst critic. So if there is anything you take away from today is to be kind to yourself, be gentle with yourself and do not tolerate anything less from those around you.

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Endodiet Resources and Anti-Inflammatroy Diet

Lately, many patients have been reaching out for info on the Endodiet. I have to start this blog with a disclaimer that I am not a nutritionist and any and all dietary changes should be discussed at length with your physician. That being said, I am happy to pass along information that has helped me as a patient and that has helped the patients I work with.
 

Endodiet Friendly: Grilled Shrimp with a Black Bean, Nectarine Salsa

Endodiet Friendly: Grilled Shrimp with a Black Bean, Nectarine Salsa

Why Endodiet?

When I first went to see my endometriosis excision surgeon, he asked me if I had given up soy, dairy, gluten and cut down on red meat to help with my endometriosis symptoms. It was the first time I had heard that a change in diet could have an impact on how terrible I was feeling. Although, when I reflected back on my life,  I noticed that when I ate an excess of gluten and dairy, I felt very ill.

It's been five years since I started following the endodiet and it really has brought me relief. Granted, diet is not a substitution for excellent excision surgery. I truly feel that when I had a lot of disease, no matter how strictly I followed the diet, I still felt very ill. But following the endodiet post excision has benefited me greatly. I saw a decrease in my bowel related symptoms as well as a decrease in bloating. Also, eating better helped give me more energy and reduced my endo related fatigue.

The endodiet means different things to different people. Some encourage patients to follow the FODMAP diet. Others recommend doing Whole 30. Others encourage patients to stop eating alcohol, caffeine and sugar on top of gluten, dairy and soy. After consulting their physician, I always encourage patients to start with cutting out gluten, dairy and soy and then branch out from there. Having a chronic illness is stressful and dieting can be very stressful for some people. In the end, I always tell patients to be gentle with themselves and do their best.

There are also food intolerances tests that can be done by your doctor that can actually measure the inflammatory reaction your body produces to certain foods. I did the ALCAT test and found it very helpful.

Tortilla De Patatas

Tortilla De Patatas

Tackling the Impossible

As a lover of food and an admitted stress eater, I found following the endodiet was and still IS no easy task. I had to start following it gradually, cutting out banned foods one by one. I actually did a pizza and bread goodbye tour! I would say goodbye to pizza with bell peppers and then cut it out. I then would say goodbye to Sicilian  pizza and cut it out! I then would say goodbye to Sicilian pizza with bell peppers and cut it out! I found this technique to be helpful as cutting out foods I loved felt like a loss that had to be acknowledged.

Not the same as the Pizza in Little Italy, but still tasty!

Not the same as the Pizza in Little Italy, but still tasty!

Once I started paying attention to what I ate, reading all of the ingredients listed in prepared foods, I couldn't believe how gluten, dairy and especially soy, were hidden in so many items. For example, who knew that all of the spray olive oil and canola oils have soy in it? Did you know that some frozen hamburger patties and even Twizzlers have gluten in them?  Often you will see the words "contains milk" in items that I never would have guessed had it to begin with.

Every Day Challenges

Unfortunately, things on the endodiet aren't always affordable or easily accessed. There are very few fast food restaurants that have options that are gluten, dairy and soy free. Not everyone has access to stores like Trader Joes. Whole Foods is another option for those looking to follow the endodiet but the prices at Whole Foods can be quite high. Following this diet often relies on patients to cook their own meals. Managing daily life stressors while managing a chronic disease can make it hard to find the time and energy to cook. Finally, for those who do love to cook, having plain grilled meats and vegetables doesn't always satisfy the food lover or the stress eater.  Even though I cut many foods out and do my best, I would say I follow the endodiet 95% of the time and try not to beat myself up for that 5% of the time I get off track.


Tips and Tricks

What I have found most helpful is to make lists of my favorite foods and do my best to find substitutes that are not harmful to my body. I have found endo friendly treats for when I am stressed and have those cravings that will not go away. I have discovered fast food restaurants that I can go to when I need a quick meal. Dominoes gluten free pizza with no cheese and bell peppers in no way compares to the local pizza I love in NY, but it can satisfy my craving. Chipotle is also a great option for patients. My local supermarket makes fresh to order sushi. It is delicious, quick and also healthy! When I need a quick meal, I sometimes buy an organic rotisserie chicken at my local grocery store and pair that with a salad or frozen vegetables.

I have found some great substitutions for dairy. I love Trader Joes unsweetened almond milk. I can even use that when making mashed potatoes and no one knows the difference! I now use soy free earth balance as a butter substitute. I have found that I can substitute almond meal for flour in baking or in making a rue for my chicken pot pie. Some patients really like the Daiya products as a cheese substitute. I am sad to say that I have yet to find a yummy and satisfying substitute for cheese.

Rice Pudding make with Almond Milk and Coconut Cream.

Rice Pudding make with Almond Milk and Coconut Cream.

More Resources

Below are some of my favorite resources for the endodiet. Just remember to be gentle with yourself. Say kind words to yourself as you try to change your diet and lifestyle, it is not easy. Be your own biggest supporter and source of encouragement!

What Top Endometriosis Excision Surgeons are Saying About the Endodiet

Dr. Tamer Seckin
http://www.drseckin.com/blog/endodiet-can-eating-right-cure-my-endometriosis

Center For Endometriosis Care
http://www.centerforendometriosiscare.com/nutrition-for-endometriosis/

Vital Heath Institute
https://www.vitalhealth.com/integrative-specialty-center/integrative-therapies/nutritional-medicine/


Awesome Nutritionists Who Know a Lot More About Endodiet Than I Do:

Erin Luyendyk RHNhttp://www.thenutritionista.ca/

Dian Mills: http://www.endometriosis.co.uk/Healthyeating.html

My Favorite Blogs I Send Patients to For Recipes, Ideas and Inspiration:

Fellow Endo Warrior: Jessica Murnane http://jessicamurnane.com/

Allergen Mom http://detoxinista.com/

My Favorite Endo Friendly Finds:

Love Simple Mills Chocolate Cake Mix, Pizza Dough Mix and Chocolate Chip Cookie Mix: http://www.simplemills.com/

Love Ancient Harvest Pasta: http://ancientharvest.com/product-category/gluten-free-supergrain-pastas/

Love So Delicious Coconut Products, especially their whipped cream and yogurt: http://sodeliciousdairyfree.com/products/coconut-milk-frozen-desserts/cocowhip-original

Trader Joes Guilty Pleasures: Chocolate Coconut Milk Ice Cream, Snickerdoodles, Kettle Cooked Potato Chips