When 'Symptom Googling' Hits a Better Diagnosis

Editor’s Note: This article previously appeared in a different format as part of The Atlantic’s Notes section, retired in 2021.

A remaining email from a reader on the women’s health thread:

Thank you so much for covering this issue. While I haven’t had the same kind of harrowing experiences as many other women, I have had my pain dismissed and out right ignored by my doctors. I’d like to share a quick summary of my story.

I was diagnosed with endometriosis in December 2014.

I had been experiencing severe, crippling menstrual pain since I was 11 years old, and at age 24, it was starting to change for the worse. I had an ER visit one year prior to my diagnosis for severe pain that was written off as kidney stones. Once those tests came back negative, I was sent on my way with a vague “acid reflux” diagnosis, further delaying my real diagnosis.

After some symptom googling, I was convinced I had endometriosis. I went to my male ob-gyn, who told me my severe, life-altering pain was “normal” and prescribed me another birth control. After another appointment, I practically demanded the ultrasound and surgery necessary to diagnose me, which he begrudgingly prescribed.

The day of my surgery, my ob-gyn came into the room before I was wheeled out to the OR. He spoke mostly to my husband instead of me, making sure he understood what was going on rather than the person being cut open. He even went so far as to say he was pretty sure we wouldn’t find anything in my surgery, but sure enough, I had endometriosis.

I thought I was on my way to feeling better after that episode, but my follow-up appointment (where my ob-gyn again talked mostly to my husband) was full of questions about when I wanted to have kids and how I needed to do it soon. We had just gotten married and were more concerned about me living my life normally than having a kid. But I wasn’t given anything to manage my pain at all.  Shortly after, I left his practice to find a new, female ob-gyn.

I raise awareness for endometriosis and women’s health issues through my blog, which has more details on my diagnosis and treatment. You can read a bit more about it here (and feel free to post the link). Thank you again for covering this issue. Women like me who are fighting to be heard truly appreciate it.

A quick primer on the condition, for those unfamiliar:

Endometriosis happens when the lining of the uterus (womb) grows outside of the uterus. It affects about 5 million American women. Endometriosis is especially common among women in their 30s and 40s. The most common symptom is pain. The pain happens most often during your period, but it can also happen at other times. Endometriosis may also make it harder to get pregnant. Several different treatment options can help manage the symptoms and improve your chances of getting pregnant.

Here’s a detailed list of treatments for the incurable condition, which affects approximately five million women in the U.S.