The Beginning of My Endometriosis Journey

Like millions of Americans, I have had periods of my life during which I had no health insurance. When I finished graduate school at age 26, I was no longer eligible for my university’s health plan; and, since I was 26, it wasn’t possible for me to even ask my parents to add me to their health plan for even a brief time. To make a long, complicated, and all too common story short: I tried my damnedest to make sure I had coverage and it didn’t work.

For the few years I went without insurance, I paid out of pocket for all of my doctor appointments, medications, and treatments. Thankfully, I had no major health crises during this period— a serious injury, cancer diagnosis, or some other devastating situation would’ve rendered me bankrupt.

Managing my migraine disease

Once I had insurance again thanks to the Affordable Care Act (ACA), I started going to routine care appointments instead of just the few appointments per year with my migraine specialists. (At that time, my general health was fine— my priority was taking the best care possible of my migraine brain. I was dealing with chronic migraine disease back then and all my health-related funds went toward that. Read more about my struggles as “The Migraine Girl” at Migraine.com.)

Finally seeing a gynecologist

All of this is to say that I went 4-5 years without seeing a gynecologist and/or getting what’s supposed to be an annual pelvic exam. I found a highly recommended women’s health clinic that my insurance actually worked with and booked an appointment. For the first ten minutes of the appointment, I met with a nurse practitioner. She started by asking me routine questions about both my general and gynecological health, and then she asked me to describe my periods.

Here’s what I remember saying: “Well, they used to last about five days. Now they are anywhere from 7-10 days. I spot a lot before and after. Oh, and they’re really heavy, and I pass a lot of clots. The cramps can get pretty bad. And even the ‘super’ tampons designed for heavy flow days last me an hour or so during my worst days”.

I noticed the nurse practitioner’s eyes widening as I described my periods and pelvic discomfort. She touched the exterior of my abdomen and I uttered a tiny yelp of pain when she pressed where my right ovary was. She told me she’d be right back; she was getting an ultrasound machine.

Within a few minutes, she had the machine all set up. After staring carefully at the monitor, she told me, “I’m going to get Dr. H.” That’s the moment I knew that something wasn’t normal.

This was the beginning

This was the beginning of my journey with endometriosis. The effects of the condition had come on gradually over the course of several periods; I didn’t realize my periods were heavier and less comfortable than they “should” be ideally. And they’d stayed so heavy and uncomfortable for so long it didn’t occur to me that I should schedule an appointment with a doctor to discuss them.

How did your journey with endometriosis begin? When did you—or your healthcare provider—first notice that there might be something worth investigating? Share your story below!