Ending the Endometriosis Silence

The 4th annual Worldwide Endometriosis March will take place on March 25th. Endometriosis is a chronic disease that affects women during their reproductive years. It occurs when uterine-lining tissue is found growing outside of the uterus, typically resulting in immense pain during and between periods, heavy and long menstrual cycles, gastrointestinal upsets, and fatigue. There is currently no cure for endometriosis and symptoms can be difficult to manage.

Survey findings:

A nationwide survey to measure both women and doctors’ understanding of endometriosis was recently conducted by the independent women’s health organization, HealthyWomen. The online survey was administered from December 7, 2016, to February 6, 2017. The survey results showed that there is a need for greater awareness surrounding this disease. Approximately 5 million women in the U.S. are affected by endometriosis, which raises concerns in terms of the lack of awareness for the disease. According to the survey, 42 percent of the women with endometriosis were told by their doctor that the pain they were experiencing was “part of being a woman.” Endometriosis is difficult to diagnose, which the survey proved true as 72 percent of women with endometriosis had to visit 2 or more doctors before being diagnosed.

In the U.S., it takes an average of 10 years for women to receive a proper diagnosis of endometriosis because of the lack of knowledge among the general population and medical world. Knowing the symptoms of endometriosis could help women determine if they are suffering from the disease; however, many women are unaware of all the key symptoms. In fact, the survey found that 42 percent of women weren’t aware that pain during sex could be a symptom of endometriosis. In addition, 20 percent of doctors reported that they do not ask their female patients if they experience this pain. It may also be difficult to determine if a woman has endometriosis because laparoscopy is the only definitive way for it to be diagnosed. There is a lack of funding for endometriosis research, possibly due to the stigma surrounding women’s reproductive health. With improved research and understanding of the disease, women could have access to a wider range of treatment options to choose from, increasing their personal autonomy.

Raising Awareness:

Although it can be difficult, revealing personal health stories may help others recognize and understand the symptoms they are experiencing. This could also potentially decrease the amount of time it takes to diagnose endometriosis. That’s why many celebrities have come forward to discuss their experiences living with endometriosis. The more we talk about endometriosis, the more awareness we will raise about this often-misunderstood disease.

In an article published in The Women’s Health Activist, former NWHN intern shed light on her experience with endometriosis. Read NWHN’s “Quick Health Fact” on endometriosis to learn more about the disorder.