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March 11, 2021

Ask the expert: Endometriosis awareness

March is Endometriosis Awareness Month and Stacey Missmer, professor of obstetrics, gynecology and reproductive biology in the Michigan State University College of Human Medicine, specializes in research looking at chronic pelvic pain and endometriosis. Her current Women’s Outcomes Research and Knowledge, or WORK, study explores girls’ and women’s experiences with pelvic pain and the care they receive. The study is funded by a grant from AbbVie.


Why is this study important?

For so many reasons. People — including medical professionals — often don’t realize how many women are impacted by chronic pelvic pain — about 30%. Despite the large number affected, a lot about the condition remains unknown. Pelvic pain is often overlooked or incorrectly dismissed as “normal” period pain, but pain that disrupts your quality of life is not normal, even if it happens to coincide with your menstrual cycle.

Research has shown that it can take women with endometriosis, a disease often marked by pelvic pain, an average of seven years during which they interact with an average of five medical specialists to receive a proper diagnosis and treatment. And that average only includes those who are successfully accessing care. Geography, income, insurance status, education and race are all demographic characteristics consistently associated with successful endometriosis diagnosis.

This delay and inadequate care can mean prolonged and worsening life-impacting pain and increased risk for more symptoms and conditions later in life. Women with endometriosis are at higher risk of developing depression and anxiety, heart disease, autoimmune disorders, infertility and ovarian cancer. We need data — documentation of the journeys of diverse women — to really understand who is experiencing pelvic pain and how it’s impacting their lives, with the goal of shortening the amount of time it takes for successful diagnosis and treatment.

 

How is this study different than other studies in this area?

The WORK Study is unique, because it includes girls and young women, ages 12-30, from all over Michigan, ensuring inclusion of those with different backgrounds and experiencing different points of their health journey. Previous research around pelvic pain primarily studied middle- to upper-class women with insurance who were already successfully receiving care from a specialist. Our goal is to enroll a diverse group of girls and young women from all walks of life, including those in the eastern and western cities and those living in agricultural and rural areas in Michigan so that we can give voice to all — including those who do not have or have more limited access to health care.

 

Do pelvic pain and endometriosis receive the attention that it deserves? If not, why not?

No, topics like pelvic pain and menstrual periods in general are often considered sensitive topics and people tend to shy away from them. Without appropriate conversation and education around menstrual health and conditions associated with menstruation, the symptoms of diseases like endometriosis can be missed, misunderstood and stigmatized. Health care providers are not routinely asking women about their period characteristics or assessing for pelvic pain.


Has the COVID-19 pandemic had any specific impact on chronic pelvic pain or endometriosis?

Chronic pelvic pain can increase in frequency and severity when challenged with stress and anxiety, the unraveling of personal coping mechanisms and not having access to health care — all of which have become more of a reality for millions of women during the COVID-19 pandemic. In addition, the inflammatory nature of chronic pelvic pain and a disease like endometriosis that is associated with immune disruption can leave some girls and young women at a higher risk of infection.


How far along is the study? Can other women and girls still enroll?

Yes, we are still welcoming new participants into the study and our goal is enrolling 1,000 participants. Please share this information with any girls and women in your life — ages 12-30 — who have ever experienced pelvic pain. Encourage them to visit the WORK Study webpage go.msu.edu/workstudy to learn more.


Why did you decide to specialize in endometriosis research?

Everyone I’ve ever spoken with about this work has themselves or has a loved one who has experienced pelvic pain or other life-impacting gynecologic health issues. There is never a shortage of questions to ask and answer. There is no doubt that discoveries that are small building blocks or huge leaps forward each have the potential to affect the health and well-being of individual women, their families and communities, and our society as a whole. The barriers remain and are frustrating, but the potential to make a better world for so many makes it easy to stay passionate.

By: Geri Kelley

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