Endometriosis. It’s kind of a mouthful isn’t it? You may have heard about it on commercials or from a friend who struggles with it. But what exactly is Endometriosis?
Endometriosis, aka Endo, is a disease that effects 1 out of 10 women across the globe. Yes, 10% of women in the entire world have endometriosis. And that’s just from what statistics show! There are countless women who have yet to be diagnosed. This is most likely because we are told that cramping and PMS is just a part of being a women. But, let me tell you, endometriosis is verydifferent.
Endometriosis is an incurable disease in which the normal cells of the uterine wall, the endometrium, are found in other areas of the body. This leads to symptoms including, but not limited to, pelvic pain, severely painful periods, fatigue, and infertility. Although usually found within the peritoneal cavity (the cavity that holds your abdominal organs), Endo has also been found in distant areas like the lungs and the brain.
When Endometriosis is present, the endometrial cells in the abdominal cavity are acting just as they would if they were in the uterus. So basically, when Aunt Flo comes to visit, people with Endo are having bleeding within their abdominal cavity too. This cascades into an inflammatory process that causes extreme pain. The body will then create adhesions to repair the tissue that has been damaged; eventually leading to spreading of the endometriosis.
Sounds awful, doesn’t it? Well this does not even touch the amount of physical and mental pain an Endo Warrior goes through. For some, the pain is only present when Aunt Flo comes to visit. For others, it’s a daily battle.
I, unfortunately, fall into the latter category. Oh! Hi! My name is Melissa. I am an Endo Warrior and Advocate. I run a blog called Eighty-Six the Bread, which focuses on living well with food sensitivities and endometriosis. I am also a full time Registered Nurse, so if my above rant was a little too scientific for you, now you know why. I promise I tried to keep it simple.
MY ENDO STORY
My journey to an endometriosis diagnosis was not much different from other women.
In April of 2017, I explained to my gynecologist how I had been off of birth control for about a year and a half without incidence of pregnancy. I was concerned that my biggest fear while growing up was true. I was afraid that I was infertile. Not only was I afraid of this diagnosis, but my symptoms during my period were progressively getting worse every month.
Although I have had really bad period symptoms since age 13, I was noting new symptoms. I was having hot flashes with every period and even in between periods. I was always tired. My periods were heavy, painful, and draining. I would occasionally get dizzy. I had constant brain fog and found it difficult to find the right words in conversation. My menstrual cramps would radiate to my lower back, mid back, and all the way down my legs. I was calling in sick from work far too often. I felt like curling into fetal position and rocking back and forth was the only way to feel better, although it never actually helped. These symptoms were even present with my 800 mg Ibuprofen tablets that I was taking multiple times a day during my period.
NOTE: This much NSAID use is definitely not recommended, unless prescribed and taken with medications to help prevent GI bleed.
After that initial visit with my doctor, my heart sank. I left with my discharge papers in hand that stated a diagnosis of infertility. Now as an RN, I was angry; livid even. How could he diagnose me without even doing any tests yet!
And as a patient, I was heartbroken. But looking back now, he had a lot of information given to him during that visit, so it wasappropriate to give me a diagnosis of infertility. I followed that visit with a vaginal ultrasound, all the blood tests in the world, and some homework. My ultrasound was normal, my blood tests were normal, and my homework was to start charting my cycles.
After a few months of charting, my doctor and I decided it was time that we get an official diagnosis of endometriosis. And if you didn’t know, this can only be done by physically seeing it. Meaning the doctor has to do an investigative surgery to look inside the abdominal cavity and find the Endometriosis. There is literally no other official way to diagnose Endo.
So in November of 2017, I woke up in the PACU with my wonderful husband at my side ready to let me know that my laparoscopic surgery went well. It was confirmed, through the surgery, that I have Stage 1 Endometriosis.
It’s important to note that in my research I have read that the stage of endometriosis does not always coincide with the patient’s symptoms. Some people with Stage 4 (most advanced stage) never have any symptoms. Alternatively, you have the people, like me, who present with almost all the textbook symptoms and are diagnosed with Stage 1 disease.
After surgery, my doctor and I started the journey to increase my fertility. Since so much of endometriosis is triggered by inflammatory processes, one of the first things we decided to tackle was my diet.
So in March of this year, I completed a food sensitivity test and elimination diet that led me to realize that I am sensitive to SO MANY FOODS. You can read about my food sensitivity testing here.
Foods that I am sensitive to include:
· Dairy (milk, yogurt, ice cream, creamy dressings, etc)
· Almonds (milk and nuts)
· Gluten/Wheat (pasta, bread, pastries, soy sauce, condiments, candies, etc.)
· Red Meats (Pork and Cow)
· Brewer’s Yeast (alcoholic beverages, soy sauce, kombucha, vinegars, etc.)
· Bran (oats, cereals, whole grains)
Foods I need to avoid due to my Endometriosis (The Endo Diet):
· Processed/fatty Foods
· Refined sugars
· Red Meat
· Caffeine (Although I haven’t been able to give this up yet)
With the lengthy list of sensitivities I have, I had to uproot my entire diet and focus on the changes needed for this new lifestyle. As you can imagine, this effected my mental health. I basically went through every stage of grief. Denial, anger, bargaining, depression and acceptance. Let me tell you, giving up your favorite foods is not easy!
In the end, I realized that my health and goal of creating a family was more important than wallowing in my depression. I mean, here I was. A nurse taking care of people every day as they battle chronic and acute diseases; yet I wasn’t helping myself. Nope! I wasn’t having it!
And so, Eighty-Six the Bread was born. I started to embrace the dietary changes and the result has been amazing!
I do still battle endo symptoms, but overall, my mental and physical health has improved. I have less cramping outside of my period. I have less dizziness (although it still comes and goes). I noticed a HUGE decrease in my headaches. I am less bloated. I have more energy. My concentration has improved. My poops are normal! Haha! And even better, Aunt Flo is not so mean to me anymore.
Per my doctor, all of this means that my fertility is improving. So there is hope! I do still have very low progesterone levels, and other problems that affect my fertility; but I feel so grateful that I have reached an accepting point in this journey.
I realize that this journey is not a sprint. And I am prepared to run the marathon (not literally).
I realize that I may still have awful days, depressing days, painful days, etc. But what matters, is that I keep my stride and reach the finish line. No matter how long it takes, I will get there. I am determined.
And if it means that adoption or surrogacy is the way to a family, then so be it. There is a plan greater than me, and I am just along for the ride.
To continue following Melissa’s journey click any of the links below!