My endometriosis diagnosis was one of the most frustrating yet validating experiences of my life. Nobody wants to be told they’re sick, especially with a painful and incurable condition like endometriosis. But when it’s already clear something’s wrong with your body, you can’t help hoping for an explanation. A diagnosis confirms your experience is real. 

Receiving an endometriosis diagnosis is notoriously difficult and often takes 7-10 years. My own journey only took roughly one year, and I’m lucky for that.

In 2017, symptoms I’d had for years hit a breaking point. I experienced bloating that made me look six months pregnant. I also had bone-deep fatigue and stabbing pains in my abdomen. My worst symptom was constipation, often going 10 or more days without a bowel movement.

At the time, I was living in England, finishing my master’s degree. As my classmates applied for jobs and galloped toward the next phase of life, I felt stuck. I decided to move home to the United States to figure out what was going on with my body. 

At age 24, I moved back in with my parents for the first time since I was 17. 

I’d trained as an occupational therapist, which is a physically demanding job. Due to my symptoms, I could only work part-time. I took up freelance writing on the side, which was physically accessible and allowed me the flexibility to attend doctors’ appointments. 

And there were many doctor’s appointments. I had two years of remaining eligibility for my father’s health insurance, so it felt like now or never to get to the bottom of my symptoms.

Due to my extreme constipation, doctors assumed my issues were related to my digestive system. I attended numerous appointments with a local gastroenterologist (a doctor specialized in diagnosing and managing digestive conditions), but all the tests came back normal. 

One of those tests was a colonoscopy. I desperately hoped I’d wake up from the procedure to answers about what was causing my symptoms. But my colonoscopy results were normal.

At the time, I was vaguely aware of endometriosis because my mom had it. However, I’d never had the trademark terrible periods. Even so, grasping at straws, I mentioned it to my gastroenterologist.

“You couldn’t possibly have endometriosis on your bowels because it would have shown up during your colonoscopy,” she told me. I cried in my car after that appointment, feeling like yet another lead on this infuriating detective hunt had fizzled out.

What I learned later is that my gastroenterologist was misinformed. Endometriosis grows on the outside of organs, and only in extremely rare cases does it infiltrate the entire bowel wall. In other words, a clear colonoscopy doesn’t mean a person can’t have endometriosis.

At this point, I was referred to a specialist gastroenterologist at a university hospital an hour away. My summer was filled with long car journeys to invasive diagnostic tests that often left me feeling humiliated. All results came back normal.

In the late summer, I was working on my computer at my grandparents’ dining table. My freelance writing included some health-related assignments, and I found myself reading an article about how endometriosis can cause bowel symptoms, including constipation. Something in my gut told me: This was it.

I scheduled an appointment with my primary care physician. When I told her about the article, she referred me to a gynecologist. A few days later, I attended the appointment—this time, armed with my article and other information from internet sleuthing. 

Endometriosis is heritable, and both my mom and grandma had it. I’d exhausted my options on the gastroenterology side. My work, social life, and mental health were suffering. Surely this was worth investigating?

I came out of that appointment miraculously scheduled for a diagnostic laparoscopy in three days’ time. 

The following Monday, I woke up in a fluorescent-lit hospital room. “Do I have it?” I asked the nurse, who was monitoring my beeping vitals. “Yes, they found endometriosis,” she told me.

My journey to an endometriosis diagnosis was quicker than most, due to privileges afforded to me. If I hadn’t had access to my father’s health insurance, been able to work part-time and attend mid-week doctor’s appointments, and honestly, if I hadn’t had an entire master’s degree in healthcare that allowed me to decipher the article, who knows how long this process would have taken?

Even so, my endometriosis diagnosis was only the beginning of a long journey. The following years brought worse symptoms, and I ultimately traveled to a specialist endometriosis surgeon. He used a surgical technique called excision, where the endometriosis lesions are removed rather than burned, and I received staging and a more extensive assessment.

In that surgery, doctors found endometriosis along my intestines (yes, I did write a strongly-worded letter to the gastroenterologist who performed my colonoscopy). I haven’t experienced constipation or pain since.

If you’re in the midst of this process, my heart goes out to you. Endometriosis diagnosis is not an easy path, but if my experience teaches you anything, it’s that you are your own best advocate. Nobody else is going to battle as hard for you or understand what you’re going through as well as you. Do your research, get a second opinion, and don’t listen to anyone who tells you that your pain or symptoms aren’t real.