What The Founder Of Endo Awareness Month Wants People To Know About The Disease
I first started having symptoms of endometriosis when I was 16 years old. During that time period, menstrual pain was—and often still is—considered "normal," and there wasn't anyone I could talk to about my symptoms.
When I went to college, I visited the university health services, hoping for a better understanding of my pain. But there was no attention paid to something bigger than "just" menstrual cramps, and I was prescribed oral birth control pills.
The idea that a normal monthly bodily function would be routinely painful was just absurd to me. Unfortunately, that was the way menstrual pain was, and oftentimes still is, treated.
How I finally took control of my health.
In my 20s, I was among a group of nine women who opened a women's health clinic. There, I was able to glean information about the cause of my pain and how to manage it naturally. I couldn't tolerate the hormonal birth control, so instead, I focused on eating organic foods for support.
Though I was still undiagnosed at the time, this diet helped support my gut microbiome and, therefore, my immune system. These elements together helped me manage my endometriosis symptoms. For a long time, the balanced lifestyle helped my pain to subside.
Then suddenly, in 1979 after a pesticide exposure, I became bedridden with utter exhaustion, and the menstrual pain returned. I was exhibiting symptoms of chronic fatigue syndrome1, or myalgic encephalomyelitis, an autoimmune disease that women with endometriosis are at a higher risk of developing2.
I pushed my OB/GYN to conduct a laparoscopy, which is a surgical procedure used to diagnose endometriosis. While she was reluctant, stating that "even if I had it, there was nothing I could do about it," I needed to make sense of the debilitating pain.
When I was officially diagnosed, I decided I could not possibly be the only woman in the world with endometriosis.
How I founded the Endometriosis Association.
In January 1980, with the help of another health clinic, we started the Endometriosis Association, a safe space for people with similar symptoms (pelvic pain, menstrual pain, pain during sex, fatigue, etc.), to share their experiences without being judged or dismissed.
Before I knew it, we were receiving letters from all over the world. Despite some language barriers, we were able to understand that there was an enormous amount of suffering going on and an even bigger need for research.
How endometriosis research has grown today.
Fueled by my own experience and the letters I'd received, I was inspired to visit the National Institutes of Health (NIH)3 in Washington, D.C., to find out what kind of research they were doing on endometriosis. Turns out, they weren't doing any. With the help of Karen Lamb, Ph.D., and the Medical College of Wisconsin, we (the Endometriosis Association) founded the first endometriosis research registry. Later, we published extensive data from the registry with the National Institutes of Health.
Fast-forward to December 2020: As a result of our work over the last few decades, the Endometriosis Association was able to push $26 million for endometriosis research through Congress.
Throughout decades of research, we've learned endometriosis is more than just a hormonal disease; it's also an immune system disease4. We've proved this is a disease that affects women of all socioeconomic groups and races, from preteen to postmenopause5.
Now, with support from the Alliance for Endometriosis and Endometriosis Awareness Month, people are becoming more empowered to talk about their experiences with the condition. We've come a long way since I was that 16-year-old girl, confused and alone in my pain, but more work still needs to be done.
Women often don't know their own power. We assign control for our own bodies to others—in this case, health. care providers, who oftentimes have only a singular perspective. Since this disease is both hormonal and immunological, it can easily be misdiagnosed. Trust your instincts, and take matters into your own hands if you're suffering from endometriosis. And also know, you don't have to go at it alone.
Mary Lou Ballweg is President and Executive Director of the Endometriosis Association, an organization she co-founded in 1980 after being bedridden with endometriosis and related illnesses. The non-profit organization provides support and information for families affected by endometriosis, educates the public and medical community about the disease, and promotes and conducts research.
Together with Karen Lamb, Ph.D., she established the first research registry in the world on endo in 1980; the Association's updated registry is maintained at the NIH where Ballweg collaborates on studies and established a joint fellowship. She has raised millions of dollars for the endo movement.
Ballweg’s honors include being a founding Advisor to the Journal of Endometriosis, an extramural advisor on development of the NIH Reproductive Sciences Branch strategic plan, an ad hoc reviewer for Fertility & Sterility, as well as sitting on the evaluation panel of the NIH Specialized Cooperative Centers Program in Reproduction Research. She has won numerous awards for her work.