As an endometriosis survivor I am happy to share my endometriosis story with you and my passion for feeling better through food!! In the past few years I have reflected on myself, not just how I feel physically, also emotionally. I have found that food is the vessel to achieving my goals of decreasing my pain.
When my endometriosis story began
When I was 10 years young I got my first period. I remember it like it was yesterday. I was in sixth grade, in class and started to double over with horrible cramps. I went to use the restroom and, voila, I had started my period.
I could feel my mom’s excitement, her little girl was starting the next chapter in her life. I remember her so proudly calling my aunts and Grandmas to share the good news. They all were so excited for me.
At that time in my life, I didn’t know anyone else in my class that had gotten their period. I had only gotten a brief introduction to the female reproductive system the year before in school and earlier when my Mom read a book to me and discussed the changes my body will experience. I felt isolated, embarrassed and scared. Would every month be like this? What should have been a day of induction into becoming a woman, to me became the first day of my chronic pain.
From that day on, each time I got my period I thought to myself, okay, do I have gym class today? Am I going to have to wear shorts? What if I have to change my pad in the middle of class? I can barely move from the pain, how am I going to make it through the day? These are questions that an adolescent should not be asking themselves. They should be excited about each opportunity and the future, whatever that holds for them. Me, I was just worried about when the pain would start again. I would come up with ways to “pretend” that I was sick, so my friends and family wouldn’t see my pain as “just that time of the month”.
From an early age I was raised as a pescatarian (fish and vegetables). My parent’s instilled in my brother and me the importance of a “healthy” diet. We didn’t have sugary cereal or treats. Instead, we indulged in whole grains, vegetables, legumes and soy products like tofu and tempeh. Little did I know that the diet that I was raised on would be a main culprit that would feed my endometriosis.
I struggled with my period all throughout middle and high school. Staying home from school because I was “sick”. I couldn’t be the only person going through this each month? What’s wrong with me?
College years
When I moved away to college in August of 2001, I was excited and nervous to be on my own for the first time. Questions started to come up for me that I never thought of before, how do I take care of myself, what food am I going to eat, how am I going to get myself up for an 8AM class, can I be disciplined enough to do my homework? I was ready for the challenge and thought, this is my opportunity to be brave, strong and independent.
In November I visited my parents for the weekend and while watching TV began to experience an intense pain overwhelm my entire body. I tried to brush it off as my “normal” period pain but soon became physically ill, had stabbing, sharp pain in my abdomen and felt like I was going to faint. My mom took me to the ER where I had my first pelvic exam, with a young male doctor. I remember thinking, this isn’t how my first introduction to taking care of my female reproductive system should be. I was diagnosed with my first ovarian cyst and was sent home to recover. Never being told that I had endometriosis.
Over the next few days the pain intensified and my period got heavier. I couldn’t stand it anymore. Something wasn’t right. I went to the ER in my college town and was admitted for additional testing.
I felt like I was slowly dying.
Finally, after an ultrasound I was diagnosed with an endometrioma or “Chocolate cyst”. A chocolate cyst in a nice way of saying, an ovarian cyst filled with blood (blood looks like chocolate).
My cyst was unusually large and at the time of discovery didn’t pose any threats to my body. I was just going to have to grin and bear the pain until the cyst shrunk on its own. I remained under doctor’s care and was monitored for my pain.
The following day, I was told that my blood count levels had changed and that my appendix was showing signs of inflammation. I needed immediate surgery.
During my recovery, I was told that the cyst had ruptured and was excreting blood into my abdomen, the source of my inflamed appendix. They were able to cauterize the cyst to stop the bleeding and removed my appendix, along with a pint of blood from my abdomen. I thought to myself, thank goodness this is over, now all I have to do is recover. Still never being told that I had endometriosis.
I had to withdraw from my first semester as a freshman in college, move out of my dorm and back in with my parents. I felt defeated. And was determined to go back for my second semester.
My recovery was slow. I had multiple surgery sites, not to mention the internal scarring starting to form that I couldn’t visibly see, but could feel as pain.
After returning to college I felt stronger and ready to take care of myself. But I continued to have painful periods and thought, well, this is something that I am just going to have to live with. I was getting pretty good at consuming Aleve daily, contorting my body into various balled up positions and arranging my schedule so that I could plan to be in bed for a few days each month. Unfortunately, I still didn’t know the importance of hydration and nutrition to my body’s recovery and the future.
Each time I would go to the ER for my pain, I was treated like a drug addict. Why would a young college student be in need of pain medications? I felt like no one believed me. Was I just making a big deal out of a natural process of life?
Over the years, my body got stronger, not stronger in the sense that my pain decreased, stronger in that I could bear and hide the pain better. I had accepted that this was going to be ME until one day, I go through menopause and hopefully the pain would STOP.
Over the next couple of years I began introducing meat into my diet. A nutrient that I thought my body was lacking. I devoured steaks, learned to cook chicken and thought I am helping my body heal through protein.
I continued on with my life. I finished school and worked as a waitress, carefully arranging my schedule so I could plan for “that time of the month”. I always had the fear that I would get fired, because I had to call in because I was “sick”.
Every so often I would remember when I was 12 and my mom took me to an alternative doctor for my pain. The doctor suggested cutting out sugar and eating tuna to help with the cramps. Not something that a 12 year old wants to hear right during the Christmas season. My mom put a small bag of cookies in the freezer for me, so that I could enjoy them later, when I wasn’t experiencing so much pain. I would begin to eat more tuna and drink a Blue Sky instead of a “regular” soda. Still not truly understanding nutrition.
At this point “refined sugar” was not a common phrase, so even when I did indulge in sugar, it was processed white sugar.
Later years
It wasn’t until I moved across the country to attend The Florida School of Massage in 2008 that I revisited the choices that I was making to enhance my quality of life. It was suggested to the class that “this was an opportunity to re-invent ourselves. That we could leave who we were at the door and start fresh”.
As a born introvert, I wanted to be outgoing, happy, confident, secure, healthy, and most importantly, PAIN FREE. I didn’t want to live my life on my body’s terms, I wanted to live life on my own terms.
How could I be available to help others feel better when I felt pain? I began to explore what I wanted for myself. What products do I want to put on my body? What is eating healthy for me?
I started small. Instead of microwaving my frozen dinner, I cooked it in the oven. Instead of buying harmful cleaning supplies, I made my own. I began reading every label for each product that I bought. I began to feel more confident in what I wanted for myself. Who I wanted to surround myself with and how I spent my time. Unfortunately, I still didn’t know what eating “healthy” food meant for me.
During massage school I began to feel safe and comfortable enough to open up about my feelings of pain and how it had taken not just a physical toll on me, also an emotional toll. For the first time in my life I felt heard. I don’t mean that I never felt heard before, but this was different. I was able to speak my truth and everyone was listening to me, actively listening. I saw heads nodding, tears of empathy and sympathy and a question posed to me. “Is there anything that we can do for you right now?” Even though these individuals didn’t understand or experience my pain, they were able to hold space for me to share.
I was given the space to speak and to be heard and that felt freeing. I wasn’t judged. We were all there for a common purpose, to listen and be there for someone. Massage was only the facilitator to my self-awareness (and my future massage clients).
During this time, I began to gain a real sense of community. I didn’t hide my pain like I had in the past. Everyone wanted the best for everyone else, so coming to school in pain meant that I could reach out to my support system, not hide and be alone.
Over those six months I not only developed a sense of safety, I met the love of my life, Keith. Someone who, from the very beginning, was supportive, listened and just wanted to be my friend. Together we decided to better our lives. We eventually stopped eating processed foods, incorp orated more movement and supported each other’s decisions.
Although I was making strides to better my being, I was still experiencing debilitating pain. In 2009 I was prescribed to take birth control consecutively. Meaning I was NOT having a period every month. This was the “fix” for all my “problems”. The idea was, stop the period, stop the pain. I thought, well this is awesome! I was totally on board. Anything to help decrease the pain. NO ONE told me what lasting effects this could have on my body.
During this time, the endometriosis wasn’t dormant, I was just taking steps to mask my discomfort. It was still spreading throughout my body, I was just “ignoring” it.
In 2014 I decided that the side effects created by the birth control were not worth masking my original symptoms. I took myself off and almost immediately began to feel all of those years that I had been suppressing the messages my body had been yelling at me. My symptoms eventually became even worse and, just like before, I was scheduling my life around my period.
On December 24, 2016 we were snowboarding in Colorado and I fell backwards down the mountain and landed hard, on ice. Not knowing it at the time, that I had broken a bone and tore ligaments in my right wrist. Here is where our healthcare system actually helped me. Because I was out of work for 5 months (can’t really massage with one wrist, well not effectively at least) my income level changed and I was able to qualify for amazing health insurance.
By this time my endometriosis was so unbearable that I was in constant pain, even when I wasn’t on my period. I couldn’t pee without cramping for hours and sometimes just walking or sitting made me double over.
I remember visiting my regular OBGYN shortly after my accident and was overwhelmed with the pain and just life in general and cried in her office. Her fix, a prescription for anti-depressants. That was the moment that I decided to change my approach.
I had been researching endometriosis specialists for months on and off and was excited that I had found a few doctors leading the field in their techniques and research. One doctor in particular stood out to me because of the emphasis not only on the western medicine side of things, but also his approach to daily routines, like food and exercise. I couldn’t believe it when I found out that he was just a couple hours away. I felt like it was a sign.
I made an appointment with him and on May 7, 2017 I met Dr. Fox for the first time. I was excited to meet the person I had done so much research about. He started by listening to my health history, my age that I got my first period, my exercise regimen when I was growing up, and my diet as a child. I’m thinking to myself, what does this have to do with how I feel today? Then he started asking me if I tend to be cold? Yes. Do I have trouble gaining weight? Yes. Have I broken any bones? Uh, yes, just a few months ago. These were questions that I had yet to encounter from a western doctor. Someone wanted to know my ENTIRE health history. What? But why was he so interested in things that seemed so irrelevant to how I was feeling today?
I began to learn that girls with endometriosis have certain qualities about their past, they share commonalities. Being cold all the time (esp. in hands and feet), eating whatever and not gaining weight, low bone density, trouble sleeping, pain without periods, pain during sex, pain after sex, lack of libido, etc. I could go on and on. I was astonished that by some very basic information, I was hearing the story of my entire adolescence into adult life. This was the first doctor that I really felt heard and who really cared if I felt better. He wasn’t interested in masking my symptoms, he was interested in changing them. I was educated about a low carb, high fat diet and was given some literature to take home.
I remember that day so vividly because that was the day I stopped eating grains, legumes, soy, high-sugar vegetables, cut out caffeine and began limiting my sugar intake drastically. I have never looked back.
Over the next couple of months I could tell a little difference in my everyday pain. I still had heavy periods and general discomfort, but things were different, I couldn’t put my finger on it. It felt like the overall inflammation in my body was slowly changing, leaving.
On October 12, 2017 I had a long 6-hour surgery to remove scar tissue from ligaments, muscle tissue and multiple organs in my body, including my liver, diaphragm, bladder and intestines. He removed a 4cm endometrioma from my left ovary, cleaned up the old blood that had been in my body since 2001 and brought me back to “normal”.
I was sent home with a catheter and pain meds. My recovery was long. I felt weak, sore and needed help with just going to the bathroom. I felt defeated, I had already gone through this once before. But again, this was different than before. Dr. Fox told Keith that I was one of the worst cases of endometriosis he had seen in his 20 years of practicing medicine. I was diagnosed with stage IV endometriosis and was told, if you want to get pregnant, now is the time to do it.
I had just gone through hell and was trying to put myself together and understand how could I have gotten so bad? I reflected on my past: years of painful periods, years of estrogen feeding foods, years of birth control to mask my symptoms. The thought of moving forward with kids seemed like an unattainable journey.
In September of 2018, almost a year after my surgery we decided to move forward with trying to get pregnant. We had missed our opportunity with IUI after surgery, so I turned to my new regular OBGYN (I had “fired” my old one and had found someone that again, listened to my story). I made an appointment to have an ultrasound done so I could start letrozole, an ovulation medicine used to help women get pregnant. I got pulled into the nurse’s office and she began to tell me that I had a 3cm endometrioma (chocolate cyst) on my right ovary. I had had pain on my right side and I had just thought, no biggie, the pain is moderate most of the time, it’s just ovulation, it’s just my period. I came up with every excuse except the truth. I left the office devastated once again. I had worked so hard to keep the endometriosis from growing, changing so many aspects of my diet and my life.
I gave it a month to resolve on its own and went back for another ultrasound. Again? The same size as before? Why? I made another appointment with my surgeon to go over my options.
He told me that it would be riskier to go back in than it would for me to find other ways to resolve the cyst. I felt deflated. I had worked so hard, done so much. What else was there for me to do?
I made the decision to cut out the last thing from my diet that I had really loved, but had read in every single article about endometriosis and diet to eliminate, even one of the specialists in California, Dr Cook that I had spoken with said to cut it out of my diet, DAIRY.
Oh how I loved cheese, sour cream, cream. I had just even learned how to make my own ricotta cheese. YUM! Now, I was contemplating cutting out this high in fat, yummy goodness. ABSOLUTELY!!
Cutting out dairy was one of the best decisions I had made for myself. This is when I really noticed my symptoms decrease. My bladder pain was still there when I went to the bathroom, but it had changed. The pain didn’t linger as long and I didn’t have to double over just to get the pee out. I thought, well…this is different. My periods were still painful but not nearly as bad or long. My everyday pain decreased and I thought to myself how come it took me so long to try this?
During this time, Keith was my main support, changing his diet with me and losing over 40lbs. On July 8, 2019 we were married on our 10 year anniversary from when we began our life together. We had planned our reception to reflect our “special” diet, and even made our own wedding cake to limit the sugar and ingredients used. I couldn’t be happier.
As a massage therapist and massage instructor I was regularly looking for different techniques; hydrotherapy, myofascial, physical therapy, self-awareness techniques, breathing exercises, self affirmations, acupuncture, the list was endless. When I was initially contemplating surgery, my dad had discovered a Physical Therapy technique specializing in bowel obstruction and women’s reproductive systems, Clear Passage. At the time, my body needed more than just massage, so I move forward with the surgery, tabling alternative medicine for a later date.
I decided in August that I was ready for my next step and Keith and I spent a week at Clear Passage. A graduate from the Florida School of massage (Larry) and his PT wife (Belinda), had developed the Wurn’s technique, a blend of methods used for treating scar tissue, adhesions, obstructions and pain, manually.
During this time I received 20 hours of hands on treatment that included external and internal work as well as discussing exercises, self-care and diet. At the end of the week I left feeling lighter, taller, definitely less pain, a new sense of hope, and inspired. Not only was I already following their recommended diet (and then some), I also realized, hey, I can learn these techniques, this is massage. Keith and I immediately signed up to learn visceral manipulation with The Barral Institute.
Today I am excited to share the education and research that I have done over the course of my life and I am happy to be where I am today.
Believe me, I wish that I had been strong enough and educated enough to make these changes when I was younger. Just beginning this process, I am a strong believer in “things happen for a reason”. I know that medicine has advanced over the past 20 years, that our knowledge of food is different and that each person needs to do what is right for their bodies, not the general whole. I had believed my doctors because they were the “professionals”. I didn’t know any different, neither did my parents. How were they supposed to know that the food that they chose to feed us as kids would feed my disorder, or that my days as a soccer player were detrimental to a developing girl with endometriosis.
Changing a diet isn’t just cutting out specific foods, it’s more than that, it’s a lifestyle choice.
I hope that this blog finds it a little easier to navigate the pathways to creativity and connecting with food in a way that is healing and also yummy.
Here are some of my favorite recipes: Coconut Shrimp, Zucchini Fries, and my No Sugar Donuts.