Road to Diagnosis: Endometriosis Patient Stories

Endometriosis is a common condition, impacting about one in 10 people with uteruses. Yet on average, it takes nearly a decade to diagnose—if patients ever get a diagnosis at all.

There are a couple of reasons why. First, patients and their providers alike may dismiss endometriosis pain as “normal” period pain since its flare-ups can be linked to the menstrual cycle. Endometriosis tissue, which grows outside of the uterus, continues to act like tissue inside the uterine lining: getting thicker, breaking down, and bleeding with each menstrual cycle, causing inflammation and pain.

Second, zeroing in on a diagnosis can be a process of trial and error since symptoms can be so varied and nonspecific (think: abdominal pain, fatigue). This may cause providers to suspect other conditions, like irritable bowel syndrome or pelvic inflammatory disease, first. Standard imaging techniques like ultrasound or MRI aren’t very good at identifying endometriosis lesions. A better diagnostic tool is laparoscopic surgery, but it’s invasive and not always the best choice for a patient. 

Misdiagnosis, delayed diagnosis, and dismissed symptoms affected all three of the patients we spoke with below. Not only can this be frustrating—it can also be dangerous. Endometriosis can worsen over time if left untreated. The longer it takes to diagnose, the more opportunity there is for the condition to advance, potentially leading to more severe symptoms and complications.

By sharing three unique journeys to an endometriosis diagnosis, we hope to show that disease progression can take many forms. You might not know what to look for or when to ask for help until you hear from people who’ve already been there. 

—Sohaib Imtiaz, MD, a board-certified lifestyle medicine doctor and chief medical officer for Health.

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.

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 negative. 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. 

It takes an average of 7-10 years to receive an endometriosis diagnosis. My own took eight. 

I started having pain during menstruation in the ‘90s when I was in high school. By 2001, when I was 24, I had a gynecologist who didn’t take my increasing pain very seriously. She told me to take 600 milligrams of ibuprofen a few days before my period to “get ahead of the pain.” She also recommended birth control to help the pain, but because birth control gave me heart palpitations in the past, I didn’t want to do that.

I felt significantly better after cutting dairy and gluten from my diet because of a separate condition I had. But by spring 2009, I had developed a dull pain in the left side of my pelvis that grew increasingly uncomfortable. It started to feel painful to even wear my seatbelt. Scared that it was cancer, I avoided the doctor. Eventually, the pain became too unbearable, and I saw a gynecologist.

Tests and Appointments to Expect

Could It Be Endometriosis?