PERSPECTIVE: One students shares her misdiagnosis of endometriosis


by Lauren Myers, Special to The Simpsonian

After many years of what I thought to be “normal,” I was diagnosed with endometriosis, a fairly common but poorly understood disease that is frequently undetected, untreated and misdiagnosed.

I’m not seeking any pity, sympathy or attention. I’m sharing my story to help encourage other women who may be suffering like I did, and to take an active role in their health.

What is endometriosis?

In order to understand endometriosis, we need to understand the menstrual cycle.

Here’s a quick refresher: For female-bodied individuals throughout the month, the uterus builds lining to support growth of a potential baby, but when conception doesn’t occur, this lining sheds and the menstrual flow begins.

When that lining decides to go on an adventure outside of the uterus and grows on areas it shouldn’t, it thickens and bleeds during that time of month even though the blood has nowhere else to go — thus becoming trapped.

The result? Many physical symptoms and emotional effects while the body tries to fight back – Endometriosis.

Currently, it is not known what causes endometriosis. However, there are many responsible factors, including genetic, immunological and hormonal.

The only way to confirm a diagnosis is to have laparoscopic surgery. But once you know you have it, there are options of managing it either to relieve pain or to improve infertility (pain medication, hormone therapy, etc.).

Although endometriosis doesn’t discriminate, the exact number of women who develop it is unknown. It is estimated about one in 10 women of reproductive age develop some degree of it. Those who develop it suffer in silence for an average of 10 years before getting a correct diagnosis — myself included.

Unfortunately, the “it’s all in your head” myth is still prevalent. I was told that menstrual pain is a part of “being a woman” and “that’s just how periods are.” But no two women’s periods are alike; they are unique, as we are.

Eventually, I started to believe that I was unable to tolerate my “normal.”

Let’s be clear: Severe pain is not normal, not during menstruation, not ever!

I realized that when I got to a point where I was unable to function daily. I was experiencing deep and heavy soreness — almost as though I’m being pulled down by gravity — that sometimes was a pinch or twinge, even a stab in my lower abdomen as well as back. I knew that this was my body’s way of signaling that something was wrong.

I believe that asking for help is important, and that’s what I did.

I went to a doctor seeking assistance and understanding of why my everyday life was changing.

After a few appointments and prescribed antibiotics, I was still experiencing the same symptoms, which kept me returning to the doctor’s office for a couple of months. Each test that I went through either came back with normal or negative results.

For the doctor, those results meant that everything was well but for me it was the “unknown.” I didn’t know why I was suffering in this way and all I wanted was an answer. I kept voicing myself and I felt like I wasn’t being heard.

The last thing I ever wanted to hear whether in the exact words or similar phrasing was “it’s all in your head.” That same doctor told me that I was “worrying too much” and “to come back in two to three months” because “nothing is wrong.”

Yes, I was upset and I was frustrated.

But rather than feeling defeated, I sought further treatment because, as cliché as it may sound, each of us knows our body better than anyone else. I knew there was another doctor out there in this world willing to listen to and hear what I had to say about what was happening with my body.

As with many of us, I took to the web to search for another doctor.

I found one who seemed promising. I made an appointment with this doctor for the following week who asked a number of questions about my symptoms, did a thorough physical exam, and tested for a variety of infections, “just in case.”

Although the exam was normal and the tests were negative, this doctor was concerned about my answers to questions about my symptoms, which prompted a variety of more in-depth tests, including an ultrasound and CT Scan.

Once again, the tests results were normal.

The doctor explained to me that she believed something was happening within my body as well, and the only option to confirm this was surgery.

I didn’t have any answers for certain at this time, but I knew I was being taken seriously and on the path to receive them.

Surgery confirmed that all along, my symptoms were not in my head. They were actually in my uterus. I had Stage One endometriosis along with internal bleeding in my abdomen.

Rather than feeling fearful, I was relieved more than you could believe. Finally, having a name for what was wrong with me gave me a sense of empowerment and knowledge.

If I have learned anything throughout a variety of ordeals in finally receiving this diagnosis, it is to keep your own medical records, be an advocate for your own health and to ask a lot of questions.

Whether or not you have this disease, the most important thing we can do is to start talking because none of us should have to settle for a delayed diagnosis or ineffective care.