I remember it like it was yesterday. It was January of 2014. One moment, I was driving to work as a healthy, vibrant 27 year old, and the next, I was hit with the most excruciating pain in the right upper side of my stomach that took my breath away. Little did I know how drastically my life was about to change.
This first episode of sudden pain landed me in the ER. All my tests came back normal. I was told to follow up with my primary care physician and to monitor my symptoms.
Over the next few days, the pain subsided. I went on with life as usual—until the exact same pain struck again the following month, and the month after that, and the month after that.
At this point, I realized the pain would come about three days before my period and linger for about three days after, like clockwork. In May of 2014, I decided to see my gynecologist since the pain seemed to correlate with my period each month. I was once again told to continue to monitor my symptoms.
As each month passed, the pain would come and go, and I lived with it as my “new normal.”
By August 2014, I started experiencing a new symptom: pain with intercourse. This led me to seek a second opinion with another gynecologist. I didn’t believe the cyclical stomach pain I was experiencing, along with this new symptom of painful intercourse, was just a coincidence.
Based on my symptoms, the doctor asked if I’d ever heard of endometriosis. By now, I had been practicing as a registered nurse for six years, and this was my first time hearing the word. She explained what it was in very little detail. “It’s simple! You treat it with birth control and NSAIDs.”
Under the assumption I might have endometriosis, she prescribed a new birth control and sent me on my way.
For the next year, I tried several different birth control pills, but none of them helped my pain. My pain progressed from being just during my period to every single day. It was no longer a sharp, sudden pain that came and went. It was now a deep, pulling pain that tortured me 24/7.
Along with this pain came shortness of breath, chest pain, deep pain in my right shoulder blade, constipation, hip/groin pain, brain fog, and heavy fatigue.
In May of 2015, I decided to get yet another gynecologist’s opinion. They suggested we do a diagnostic surgery called a laparoscopy so they could officially confirm whether or not I had endometriosis. Lo and behold, surgery confirmed with a biopsy that there was endometriosis infiltrating my diaphragm, but everything else was “normal.” During this surgery, the surgeon performed an ablation to burn off endometriosis lesions.
The next step was to try a medication called Lupron (leuprolide) which put me into a medically-induced menopause. After three months of treatment, not much changed. In fact, all my symptoms were worse. I took a medical leave from work.
I had a diagnosis. I was on the “right” treatment. Why wasn’t I getting better? My primary care doctor took the lead to make sure we weren’t missing anything. Between May 2015 and January 2016, she referred me to a pulmonologist, cardiologist, rheumatologist, and gastroenterologist. I underwent several tests, including pulmonary function studies, echocardiograms, a heart catheterization, and a colonoscopy. All came back normal.
My specialists agreed that something was wrong; they just didn’t know what. I asked whether endometriosis could be making me this sick and was assured that it was “very unlikely.” My gut told me differently. This is when I decided to start doing my own research.
Over the next few months, I learned as much as I could about endometriosis, ultimately discovering a surgical technique called excision. In an excision, surgeons cut out endometriosis at the root with the goal of removing as much of the lesion as possible. It is an invasive, highly-specialized procedure.
Through my relentless research, I found The Center for Endometriosis Care in Atlanta and had my first excision surgery in May 2016. During this surgery, a surgeon removed endometriosis from my right diaphragm, colon, pelvic side walls, cul-de-sac, and uterosacral ligaments. When I woke up from surgery to learn doctors found endometriosis in all of these places, I cried tears of validation.
The average timeline from symptom onset to endometriosis diagnosis is 7-10 years. From start to finish, it took roughly two years for me to be diagnosed with and properly treated for endometriosis. Even with my background as a registered nurse, ability to navigate the healthcare system, and persistence in advocating for myself, it still was not an easy path to get diagnosed with endometriosis and receive the care that I needed.
