Caitlin's Story

How it started

I got my first period when I was 13. I was doubled over in pain in the middle of a soccer game. The knife-like pain in my pelvis was unlike anything I had experienced before. In the months to follow, I had to learn how to prepare for these excruciating periods. I would equip myself with a rattling bottle of extra strength Tylenol to combat the debilitating cramps, a full box of tampons, and packs of gum that I found would slightly reduce my nausea. Despite my fighting efforts, I often missed school. The severity of my periods made me feel far from normal. Nobody else I knew seemed to be dealing with the same issues. People had begun to know me as the “sick” kid. I decided to take the next logical step and seek the advice of a medical professional.

A parade of doctors

I first went to the pediatrician with stomach pain and bloating. That led me to a gastroenterologist for testing, but my results came back normal. I was told to stop eating things that made me feel sick. I tried different probiotics and vitamins, but my stomach issues never relented. I sought out a different opinion from a new doctor and vividly remember him looking at me and inquisitively asking “what do you see when you look in the mirror?” He assumed I had an eating disorder and out came a barrage of questions inquiring about my mental state. He referred me to a psychologist, and I left feeling frustrated that he didn’t believe my pain was real.

However, I didn’t let that experience defeat me. I felt an urgency to figure out my issue due to the amount of school I was missing. I eventually connected all of my symptoms back to my period and knew I needed to speak to a professional that specializes in hormones. After extensive research, my mom and I sought out a number of specialists in endocrinology and gynecology. Yet, when all of my labs and imaging results came back normal, I was dismissed time and time again.

The start of a new chapter, so I thought

Freshman year of college was rough. Not only were my symptoms getting worse, but I was gaining new ones - ruptured ovarian cysts. One day I was on my way to class, walking across campus, when I felt a pop in my pelvis that caused me to faint. When I came to, I hobbled to the nearest bathroom and called an ambulance.

While this is probably one of the worst days in my endometriosis journey, it prompted me to start researching ruptured cysts. What is a ruptured cyst? What conditions are cysts associated with? What kind of doctor specializes in these conditions? For the first time, this research led me to the term “endometriosis.” I remember reading through a checklist of common endometriosis symptoms and I had every one.

Finally, a diagnosis

I found an excision specialist in New York City and made an appointment that winter break of my freshman year. The doctor performed an internal ultrasound and found a 10cm endometrioma. Put simply—I had a grapefruit sized, blood filled cyst in my right ovary that was likely the reason for my excruciating pain. It needed to be surgically removed as soon as possible. The doctor was convinced I had endometriosis.

Oddly enough, in that moment I felt relief. I hadn’t even fixed the problem yet, but here was the first doctor in five years that took my symptoms seriously. He spoke to me like an adult. He explained my options and gave me the choice to decide what worked best. He let me make decisions about my own body. It was a huge weight lifted to finally have some direction. My laparoscopic excision surgery was scheduled two weeks after that appointment. That’s when the healing process began.

Healing is a process

After surgery, I remember thinking, “is this what ‘normal’ feels like?” Eager to hold on to my new normal, I was very strict about the things I could control like dietary modifications. Overtime, some mild cramping and pain returned, but nothing like I had experienced before.

Looking back, an earlier diagnosis would have saved my family and I years of pain, confusion, and financial stress. Instead of worsening my symptoms and tormenting my body with hormone shots and oral contraceptive trials and errors, an earlier diagnosis could have changed my endometriosis story by reducing years of physical and emotional distress.

It’s been over 10 years since I got my official endometriosis diagnosis and had my first surgery, and some of my endo symptoms have returned. Migraines, bloating – “endo belly”, shooting rectal pain, and intense cramps often remind me that endometriosis is a full body, chronic disease. I had my second laparoscopic excision surgery in January 2021 and am continuing my healing process. Now, I can recognize endometriosis symptoms immediately and I’ve learned to listen to my body in order to make necessary adjustments with whatever is thrown my way.

My endo journey led me to a medical profession

My journey with endometriosis inspired me to become an OB-GYN ultrasound technician. Because of that ultrasound where we found the endometrioma, I was finally able to put a name to what I was struggling with for years. I knew I had to get involved directly with patient care and what better way to do so than through the first-line imaging modality for gynecological issues.

I like to treat my ultrasounds like an open forum. I offer an empathetic ear for patients to share their stories and assure them that their concerns are valid. I strive to present a sense of community for patients to let them know that chronic pelvic pain is not normal and that they are not alone in this fight.

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Image from Caitlin.

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