Endometriosis has taught me many things over the years, but most importantly it has taught me to listen to, trust, and advocate for my body because every body is different and remarkable.

Endometriosis is unique in that it can be located in many different places in a woman's body and as a result, symptoms can vary widely. Pain may be felt in the abdomen, but it may also show up elsewhere. In my case, it shows up in my shoulder. I have a rare case of diaphragmatic endometriosis (endometriosis on my diaphragm), which causes referred nerve pain to my shoulder and sometimes neck and wrist. Like so many endo stories, it took me years to understand what was causing this pain and how to manage it. It began with a scary ER visit when I was experiencing pain that had all of the characteristics of appendicitis, but I already had my appendix out 6 years earlier. The doctors ran every scan and test they could that night in the ER, all of which came back as "unremarkable." How could that be? The pain I felt was anything but. After ruling out any immediate emergencies, I was sent home with a referral for a GI specialist. I felt confused and disappointed, I wanted an explanation. So, I started a full on investigation into my body and health.

I filled out extensive questionnaires, asked family members about their health history, and started documenting my every symptom and lifestyle habit. Gradually, I began seeing patterns and symptoms that showed up routinely - upper right abdominal pain and right shoulder pain, which sometimes traveled into my neck. At first I thought this was the result of poor sleep or over doing it in a workout, but after documenting it month after month, I couldn't deny, there was more to it. Thinking it may be a gallbladder issue, my doctor ordered a HIDA scan to evaluate the function of my gallbladder - "unremarkable." With no further clues, the tests continued - colonoscopy, endoscopy, ultrasounds, you name it, all "unremarkable." On paper, I was the picture of perfect health, but my body was telling me otherwise.

I continued to research and document my symptoms until I finally had my "aha!" moment. Regardless of what I ate or did physically, the pain arrived at the same time every month. It flared up around my period and midway through my cycle. I didn't understand why, but I knew I was onto something. I met with an OBGYN who skeptically mentioned it could be endometriosis, but I didn't have usual period cramping and my other symptoms were uncommon (so uncommon apparently that the receptionist asked if I accidentally called the wrong doctor when I mentioned my shoulder pain). Without further explanation, she prescribed me a birth control pill to skip my period. I tried the pill, but even when I skipped my period, I still experienced pain throughout my cycle as hormone levels (primarily estrogen) spiked. Frustrated by the impact the pain was having on my physical and emotional well being, I was convinced there must be a better answer. I looked to the internet and found other women with similar experiences, most of whom had been diagnosed with diaphragmatic endometriosis (endometriosis on the diaphragm). The more I read, the more validated I felt. I used this information to find an OBGYN, specialized in endometriosis, who finally suggested an MRI of my diaphragm. The MRI did in fact show something remarkable, and after two years of investigating, I was diagnosed with diaphragmatic endometriosis. While I finally had an explanation for my pain, I then faced the unknown of how to treat it. My investigation continued.

I explored my options for surgery, medication, and alternative methods. Due to the sensitive location of the endometriosis (near my lungs and chest cavity), surgery was not recommended. After trying various birth control pills with little success, I decided to focus solely on holistic methods. I stopped taking any birth control, eliminated hormone disruptors like plastics and synthetic chemicals from my everyday life, shifted to an anti-inflammatory based diet, began practicing yoga regularly, and found an acupuncturist who listens to my body as well.

It has now been two years since being diagnosed and making these changes, and I feel more in sync with my body than I ever have before. While my pain has not been completely erased, through learning about my body I am now able to manage and predict it better, which has greatly improved my overall well being. 

While I wish we could all live in an endo free world (and am hopeful that we will one day!), I am grateful for where this journey has taken me. In the past 5 years, I have learned more about how my body works than I had in the entire 27 years previously. I have a greater appreciation for the amazing things my body can do and the ways in which it communicates with me.

There is still so much we don't know about endometriosis, which is why it is so important to listen to ourselves and each other, and continue asking questions. I am thankful for the practitioners that listened to me, and continue to support me. I recognize that every person's pain and treatment is different and what works for me may not work for others, but I hope that through sharing my story, I can help others feel supported and remarkable.

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