“It stole my joy and it limited my ambitions,” said Erica of her experience living with endometriosis, a common gynecological disease in which tissue similar to the lining of the uterus grows outside of the uterus. “My life was being shredded by symptoms and pain,” she recalled at a 2019 meeting of NICHD’s Advisory Council, noting that the challenges of dealing with chronic illness drove her to the brink of suicide.
Erica lived with near-daily pain for a decade. After other available treatment options had been exhausted, her doctors agreed to a hysterectomy—surgical removal of the uterus. While not a cure, the hysterectomy helped make her endometriosis more manageable. Erica learned that two of her aunts also had endometriosis and underwent hysterectomies, but they did not speak about their experiences with Erica until her own pain became debilitating. “These are not things people talk about,” she reflected.
That needs to change. Stigma and societal normalization of women’s pain are major barriers to care for endometriosis and other gynecological conditions. Although endometriosis symptoms and severity can vary widely from person to person, the disease affects an estimated 10% of women and is a major cause of pain and infertility. Currently, the only way to confirm an endometriosis diagnosis is through surgery. While multiple treatment options—from hormone pills to surgeries—are available, they do not work for everyone, leave a chance of recurrence, and may have challenging side effects.
We must continue to invest in research to improve outcomes for women living with or at risk for endometriosis. In fact, accelerating efforts to definitively diagnose, prevent, and treat endometriosis is one of the aspirational goals laid out in NICHD’s 2020 Strategic Plan. We have much more to do, but I am encouraged by the progress we have made in recent years.
Gaining insights into the potential causes of endometriosis is critical to improve diagnosis, treatment, and prevention. Earlier this year, an NICHD-funded study identified several DNA modifications that contribute to differences in gene expression—the degree to which certain genes are turned on or off—in tissue samples from the uterine lining of women with endometriosis, compared to those without the disease. These endometriosis-associated changes may help identify genes that play roles in the disease process.
For many women with endometriosis, getting a definitive diagnosis takes years—and it requires invasive procedures. Through its Small Business Innovation Research (SBIR) program, NICHD is supporting NextGen Jane’s efforts to develop a diagnostic test for endometriosis based on biomarkers in menstrual effluent. Such a test would provide a convenient, noninvasive way to detect endometriosis.
We also are making progress in developing new and improved treatments. Findings from an NICHD-supported mouse study highlight the potential of magnetic hyperthermia—a procedure that uses heat to remove disease-causing tissues—as a non-surgical endometriosis treatment. The method involves delivering magnetic nanoparticles that specifically accumulate in endometriosis tissue. When an alternating magnetic field is applied, the nanoparticles generate heat, causing the endometriosis tissue to die. Another study suggests that oleuropein, a compound found in olive oil and olive leaves, may have the potential to treat endometriosis with fewer side effects than current therapies. In mice with endometriosis, oleuropein suppressed endometriosis progression and improved the pregnancy rate. Through an SBIR grant, NICHD also is supporting development of a non-hormonal therapeutic that can invade and kill endometrial cells at the source, stopping them from spreading and growing lesions.
These studies represent only a few examples of the progress we are making to better understand endometriosis and improve outcomes for women with the disease. Between 2020 and 2022, the number of NICHD-funded projects focusing on endometriosis jumped from 32 to 52. I look forward to more advances from ongoing and future research projects. I also am hopeful that the recently announced White House Initiative on Women’s Health Research will catalyze further innovations for endometriosis and other common conditions that impact women’s health.