This article is part of Health's new series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
I always considered myself to be in relatively good health. I had annual checkups, maintained a healthy diet, and tried to exercise. Overall, I was happy to be completely average. True, I had very heavy and lengthy periods, along with bad cramps. But so did my mom. So does my daughter. I thought that’s just how it is.
Then in 2011, after two previously healthy pregnancies, I suffered a miscarriage when I was four months pregnant. Soon after, I started having severe back and leg pain. At first, I blamed it on getting older or the fact that, as a lawyer, I sat so much during the day. When the pain didn’t go away, it seemed likely that it was due to sciatica or a pinched nerve. After a normal pelvic exam and ultrasound, my ob-gyn agreed. So did the chiropractor I consulted.
Mysterious, worsening pain
But despite physical therapy appointments and Pilates classes, the pain never completely cleared up. Not until 2014 did I realize that it worsened during and after my period. I also began suffering from other symptoms like frequent urinary tract infections, constipation, and high blood pressure. Even sex became painful. I felt so confused. If nothing unusual was showing up on my exams and tests, then what was causing my pain?
My ob-gyn suggested that I consult doctors who specialized in uterine issues, but I didn’t do so right away. I couldn't imagine that anything I had could be that bad. Plus, by this point, I’d learned to live with the two weeks on, two weeks off pain. (It required carefully timed Ibuprofen, which dulled the pain so I could function but didn't eliminate it.) It was hard to take time off from my demanding job—not to mention find a good specialist who not only took my insurance but was accepting new patients. I waited 14 months to see a specialist. In hindsight, that was a big mistake.
"Stop practicing Google medicine"
In 2015, while researching my symptoms online, I came across endometriosis, a disorder in which uterine tissue grows outside the uterus. It seemed like a possible cause of my symptoms, yet neither of the two specialists I saw that year mentioned it. When I did, I felt like I was irritating them. In fact, one of the doctors told me to “stop practicing Google medicine.”
Although both said they could treat my symptoms with various medications, they blamed the 20 or so extra pounds I was carrying at the time as the cause. I did try going on birth control pills, which they had suggested. But I had to stop because it made me throw up all the time and gave me bad headaches.
I remember walking out of the second specialist’s office on a hot August day. I had to walk several blocks to the train station, and as I walked, I tried to process my frustration. I decided I’d had it with these so-called “specialists.” No more appointments with doctors who didn’t listen to me. I’d simply deal with my two weeks on, two weeks off pain cycle until menopause.
But the pain kept getting worse. In 2017 my ob-gyn, knowing how exasperated I was, suggested I have another ultrasound. I have a habit of looking at techs’ faces when I get tests. They’re not allowed to say anything, but don’t have the best poker faces. As the tech prodded my left side, I saw her whole face drop. I found out later that she couldn’t find my left ovary.
An abdominal ultrasound was ordered, as well as a CT scan. The results showed that I had a condition called hydronephrosis [kidney swelling, caused by a backup of urine.] It was so severe that my kidney had stopped working. I was astonished. Upset. Scared. And I was at a loss about what to do, since doctors didn’t know the cause.
I went back to Google for answers. This time, I found an obscure blog, where a woman described how her kidney had been impacted by endometriosis. I knew I had to have the condition, too. I began searching for an endometriosis specialist near me.
The right diagnosis—and extensive treatment
Three months later, I met with Tamer Seckin, MD, a New York-based gynecologist laparoscopic surgeon. He'd already taken the time to read all my medical files—and he was horrified that no one spotted what he said were classic endometriosis symptoms, such as back pain and pain during sex.
Besides endometriosis, I had adenomyosis (similar to endo, it's when the uterine lining grows into the muscle of the uterus). Dr. Seckin also diagnosed me with a frozen pelvis, a severe complication of endometriosis that caused my pelvic organs to adhere to my bones. In addition to excision surgery [in which abnormal growths and scar tissue are destroyed], my uterus, both my ovaries, and fallopian tubes would all need to be removed.
The surgery took nine hours; it involved not just Dr. Seckin but also a urologist and colorectal specialist. During the procedure, they discovered that my kidney was infected and swollen to four times its normal size. They had no choice but to take it out as well.
No one feels great after this type of surgery, but truthfully, I was happy. The pain was gone. I vividly remember sitting in the waiting room before the operation, signing paperwork, and being unable to put weight on my left side because of the intense pain shooting down my leg. After the surgery, I was achy and groggy, but the pain on the left side of my body had disappeared.
Recovery was not easy—I was home on disability leave for three months—but the mental peace I finally had was worth it.
Putting dismissive doctors on notice
I agreed to open up about my story because I want other women to not wait for years to get diagnosed. Listen to your body. Believe your symptoms. Do your research and come to your doctors prepared.
We need to put medical professionals on notice that they cannot continue to ignore millions of women who have endometriosis. I want insurance companies to hear this, too, and start covering excision surgeries, which are currently out of pocket and very expensive. I don't want anyone else to lose major organs to endo.
Looking back, I didn’t live—I survived between pain cycles—for seven years. Now, I feel I have a life again.
If you have a story about being misdiagnosed, email us at firstname.lastname@example.org