Endodiet Resources

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

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

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!

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.

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 RHN  http://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

Westchester NASW Presentation: Social Work and Endometriosis and Infertility

I was asked to present my current work with the endometriosis and infertility communities for the Westchester National Association of Social Workers. Here is a transcript of my talk!

 

Our job as social workers is to improve the quality of life and subjective well-being of individuals, groups, and communities. We do this in many ways, primarily through research, policy, community organizing, direct practice, crisis intervention, and teaching.  We do this to benefit vulnerable populations.  Today I am going to talk about two vulnerable populations that I have been working with: the infertility community and the endometriosis community. I define the infertility population as those patients who need help conceiving, whether it due to a medical issue preventing them from conceiving on their own. I also include those who need fertility treatments or the use of a surrogate to build their family, like single persons or LGBT couples. Although  there are many patients with endometriosis who also suffer from disease related infertility, living with an often debilitating disease like endometriosis, comes with its’ own unique challenges in addition to the infertility piece.

Individual Counseling

Individual counseling is incredibly helpful for patients suffering from endometriosis and/or struggling with infertility. Like many vulnerable populations, patients struggle with feeling isolated, depressed, anxious and angry. They experience helplessness, hopelessness, panic, irritability, fear, denial and sometimes even apathy.  In both populations, you find many patients have experienced pregnancy loss and they are dealing with profound grief.  Both of these populations at different times are in crisis. Crisis is defined as “experiencing a situation of intolerable difficulty that exceeds the person’s current resources and coping mechanisms.”  (--James and Gilliland, 2001) Like other populations that are in crisis, these patients may have difficulty eating or sleeping, they withdraw from social situations and have a lack of interest in social activities.  Both populations struggle with the lack of empathy for their situations from family, friends, co-workers and the community at large, due to the lack of awareness and the misunderstanding of both infertility and endometriosis. Infertility patients deal with the uncertainty, “will I ever get to have the family I am hoping for” and the loss over the ability to conceive a child with the ease and spontaneity that most other people experience. Endometriosis patients struggle with having a chronic, painful, debilitating disease that can affect all aspects of life.

As a clinician working with patients in the endometriosis and infertility community, it is important first for the clinician to educate themselves regarding the most sensitive and compassionate attitudes to have towards the patients’ situations.  For instance, saying to a patient, “You cannot get pregnant because you still have unresolved issues towards your mother.” Or asking your patient who wants to try IVF, “Why don’t you just adopt?” is not appropriate.  Telling an endometriosis patient who is struggling with chronic pain, “You should just get a hysterectomy.” Or “My cousin has endometriosis and she is able to get to work every day, have you tried taking Tylenol?” is also not helpful.   Empathy and sensitivity always need to be the first response to the clients’ pain, suffering, and distress.

It is important for clinicians working with these populations to complete certain tasks with their clients. Clinicians need to help patients find positive social supports and networks to help them feel less isolated. It is important for clinicians to provide a safe space for patients to talk openly about their feelings and process what is happening in their lives. This could be anything from, “My last three IVF’s have failed and now my doctor wants me to use donor eggs.” To “I just had my sixth endometriosis surgery and I still do not have pain relief. I am out of sick time and have no idea what to do.”  As the clinician, you have to help your patient develop coping strategies for the present time and life strategies so they will have the tools to be able to handle the ramifications of their situations independently in the future. If the patient has history of mental illness, substance abuse or an eating disorder, an outside referral may be necessary to give patients extra professional support when needed. Infertility and endometriosis can have a dramatic impact on the relationships in a patient's life.  Couples counseling or family counseling can be a helpful tool to further support a patient.

Endometriosis patients are often dealing with acute or long-term situations. Clinicians must be aware that the effects of endometriosis are devastating. Patients deal with symptoms such as chronic fatigue, chronic pain, painful intercourse, terrible digestive and urinary complications, and infertility. There is no cure and the only real treatment is excision surgery. But there are no excision surgeons who currently take health insurance and patients often have to undergo multiple surgeries, even with the best care. It takes on average ten years for a patient to get diagnosed. Patients spend many years being told by multiple doctors that there is nothing wrong with them.  The grief in an endometriosis patients stems from the loss of having a “normal”, healthy life due to living with a chronic illness. It is crucial for the clinician to be aware of the disease and its’ ramifications so that he or she can support the patient through active and empathetic listening.

Group Therapy

I currently run two support groups out of Westchester Fertility.  RESOLVE is the national infertility association of America.  I run a RESOLVE approved, professionally led, support group for women who are struggling with infertility.  Again, infertility makes patients feel very isolated. In many cases, patients have no one else in their life to talk to who will understand exactly what they are going through. This group provides much needed support to infertility patients.  It will give them coping skills to navigate infertility and also help them feel connected and empowered.  There are endless possibilities for group work from working with patients who are adopting after infertility, pregnancy loss, couples who are using third party donations for their family building, a support group for men, patients struggling with secondary infertility ect…

I am also the Westchester Affiliate for an up and coming non-profit Endowarriors. The main goal of Endowarriors is the provide support and community to women living with endometriosis. The group serves as a place to talk about the struggles of living with endometriosis. We talk about anything from nutrition to the benefits of egg freezing as a means to preserve infertility.  I also bring in speakers that can help enrich the lives of those living with endometriosis. We have had an acupuncturist come and we are going to have a sex therapist come and speak.

Non-Profit Work

I work with three different non-profits in the infertility and endometriosis field. I talked a little bit about my work with Endowarriors. I will talk a little more about RESOLVE, the national infertility association, as I go into advocacy work.  I will focus this section on my work with the Endometriosis Foundation of America.

Endometriosis Foundation of America is a non-profit started by one of the top endometriosis excision surgeons in the world, Dr. Tamer Seckin and television personality, Padma Lakshmi. They have a very small staff and their big event is The Blossom Ball, which is a big black tie event in NYC. They also hold a medical conference during endometriosis awareness month to gather together the top doctors who are treating and researching endometriosis. Tonight I am going to talk about a fairly new program they have developed, called the ENPOWR Program. I was just named an EFA Embassador and am taking this program into Westchester schools. Part of the problem with endometriosis is that it takes ten years to diagnose. Early diagnosis and treatment is crucial to improving a patient’s quality of life. The ENPOWR program’s goal is to educate high school students about endometriosis in hopes that they will not have to suffer for years without a diagnosis and hopefully can get early intervention. 

Advocacy

On my business card I have that I am an infertility and endometriosis patient and advocate. I have been trying to think about, “What makes me an advocate?”  I think individual counseling and group work is a great support to the struggling patient. I think non-profits have a great role in providing resources to whole communities of patients on a more organized and grander scale.

But what do I do with my anger and sense of injustice regarding the suffering of these vulnerable populations? This is where advocacy comes in.  I sometimes lay awake at night worrying about the fact that the doctor referrals that I give my endometriosis patients do not take insurance and they cannot pay for the care they need. I worry about the kids I reach out to in schools. Yes I may help them understand what is wrong with them, but they do not have access to affordable treatment. I lay awake at night worrying about the 1 in 10 women who have endometriosis who live in poverty and do not even have access to ibuprofen or heating pads, never mind a proper surgeon to help them with their pain. I worry about how the treatment and knowledge of endometriosis hasn’t changed much in the past thirty years, and if more research and awareness regarding this disease does not happen, things may not change that much in the next thirty years.

As social workers, when we see that the system is not working, we have to work to change the system. When I look at endometriosis and infertility I see gaps and insufficiency in health care. I see moral and religious beliefs of politicians blocking patient access to needed services like IVF, embryo donation, surrogates and egg donation in some states. I see insurance companies failing to acknowledge that infertility is a medical condition which treatment can help, thus denying coverage for needed services.  As clinicians we need to think about advocating for clients on both the micro and macro levels and strive to influence policy change at a local, state and federal level.  

RESOLVE Advocacy Day: Last year I went to Washington DC to talk to my state congressional representatives about getting their support to pass bills that would directly support infertility patients.

In May 2013 a bill to create a tax credit for the out-of-pocket costs associated with IVF and fertility preservation was introduced in the U.S. Senate by Senator Kirsten Gillibrand (D-NY) and in the U.S. House of Representatives by Congressman John Lewis (D-GA). The Family Act of 2013, (S 881/HR 1851) will help thousands of people access medical treatment for infertility that otherwise would be out of reach for them due to lack of insurance coverage.

On January 24, 2013, U.S. Senator Patty Murray (D-WA) introduced the Women Veterans and Other Health Care Improvement Act S 131.  The bill will improve the reproductive assistance provided by the Department of Veterans Affairs to severely wounded, ill, or injured veterans and their spouses. It will also require the VA to provide adoption assistance and child care to veterans. On March 5, 2013, U.S. Representative Rick Larsen (D-WA) introduced the same bill in the House of Representatives (HR 958).

Million Women March for Endometriosis: A month from now I will be going to Washington to march in the million woman march for endometriosis. I have been working hard to help organize this event. The main goals of the march are to Empower, Educated and Effect Change. For the first time ever, women from all over the country are coming to DC to stand united and let their voices be heard. Also, in 52 other cities around the world, women are having events for endometriosis awareness.

In closing, social workers are uniquely awesome and uniquely in a position to effect change on both an individual level and a systemic level. It is exciting to be a part of a new field because I feel free to help in whatever way I can. One day I am a clinician, maybe the next I am a community organizer or an educator. The next day I am a booming voice for a patient in need or a population in need. It is an honor to be advocating for such determined, strong communities and I am grateful to be a part of it.

If you have any questions for Casey, please feel free to contact her at (914)629-8870 or at CaseyBerna@gmail.com

References:

James, K. J., & Gilliland, B. E. (2001) Crisis Intervention Strategies. Pacific Grove, PA: Brook/Cole.

 

About My Practice

From an early age, Casey figured out that talking to people about their life experiences, sharing in their joy and in their pain, was something that she felt called to do. In college, Casey pursued a degree in social work and stayed at Fordham University an extra year to receive her MSW.

Casey's first job was at an all girls school, counseling students ages 12-18. Casey did individual and group counseling, addressing the normal school age troubles, such as fitting in, bullying and working with self-esteem issues. Casey also worked with girls struggling with eating disorders, mental illness and addiction. She cherished her work with these girls and learned that there were no limits to the human spirit when it came to enduring life's most difficult challenges.

Casey's own endurance was tested first hand when she and her husband struggled with infertility for many years. After being diagnosed with not only endometriosis, but also with a translocation, a genetic mutation that causes recurrent miscarriages, Casey experienced the range of emotions, procedures, heartaches and joys that infertility had to offer.

Over the years, Casey became deeply involved with the endometriosis and infertility community, connecting with women struggling from around the world. She started writing a blog about her journey and became involved with national advocacy events. She found she naturally started using her social work skills as she reached out to these women and heard their stories. As she thought about where to go next in her career, it seemed natural for her to use her therapeutic skills and her practical knowledge of infertility to help other women in a more professional setting.

Casey brings to many years of counseling experience and a vast knowledge of the infertility world to patients. She brings true empathy and compassion to her sessions. She feels one of her greatest resources is her connection to hundreds of other women in the community as well as other doctors and non-profits. She is an expert in the field of endometriosis and can offer many lifestyle tips to help manage the disease. She also knows a great deal about IVF, PGD, IUI, embryo donation, egg donation, adoption and miscarriage. She would be incredibly excited to work with both GLBT couples and single men/women looking for support on their journey to start a family.

Casey currently works out of Maria Droste Counseling Services in NYC. But she also speaks to patients in need globally via phone or Skype. For more information contact Casey at CaseyBerna@gmail.com.