October 30, 2023

Illuminating the Endometriosis Experience to Improve Care

By Monica Lefton, Communications Manager.

Elevating Endometriosis to a Public Health Crisis: A Two-Part Blog 

Read part two here 

Endometriosis, a condition in which endometrial-like tissue grows outside of the uterus, is a chronic gynecological disease that affects more than 200 million women worldwide and an estimated 1 in 10 women globally. Endometriosis lesions can be found throughout the body. Endometriosis can develop beginning in adolescence but often goes undetected for years until a diagnosis is finally reached in an individual’s 30s or 40s. This diagnostic delay is primarily due to lack of awareness about the condition and exacerbated by the societal stigma and dismissal surrounding menstruation and gynecological disorders. Endometriosis also affects individuals through menopause. 

On September 11 and 12, 2023, the Society for Women’s Health Research (SWHR) convened an interdisciplinary working group of health care providers, researchers, patients and patient advocates, and health care policy leaders for a roundtable discussion on endometriosis. During the meeting, the group discussed research and clinical gaps, educational opportunities, policy implications, and patient advocacy needs related to endometriosis. The group also participated in a Hill Day to educate congressional staff about gaps in care and call for increased investments in endometriosis research. Working group members with personal connections to endometriosis, whether as patients, caregivers, or in a professional capacity, were able to share a firsthand account of their experiences with policymakers and staff. They agreed that because endometriosis touches so many lives, making personal connections on the Hill is key to bringing about positive policy change for those living with this condition. “Endometriosis is much more than a gynecologic condition; it is a systemic disease and constitutes a public health crisis,” said Miguel Luna Russo, MD, FACOG, Director of the Endometriosis, OB/GYN, & Women’s Health Institute at the Cleveland Clinic in Ohio. 

The Delay in Diagnosis for Endometriosis 

While an estimated 11% of women in the United States have endometriosis, the disease can go undetected and inadequately treated for years. A study by working group member Sony Sukhbir Singh, MD, FRCSC, Professor and Chair of the Department of OB/GYN and Newborn Care at the University of Ottawa & The Ottawa Hospital, found a 5.4 year delay in endometriosis diagnosis in Canadian women. Individuals can even experience delays up to 11 years before receiving an accurate endometriosis diagnosis for their symptoms. 

Symptoms and their severity can vary greatly from person to person. Chronic or persistent pain, including pain that arises from chronic overlapping pain conditions (COPC), is very common in individuals with endometriosis. Endometriosis is one of several COPCs – along with chronic lower back pain, irritable bowel syndrome, interstitial cystitis/painful bladder syndrome, vulvodynia, and fibromyalgia – and these conditions commonly co-occur. A critical difference, however, is that endometriosis has abnormal cellular pathology, which refers to how the disease’s cellular composition deviates from normal cellular structure and function. Endometriosis patients also commonly report painful sex, heavy periods, nausea, fatigue, shortness of breath, and sometimes bruising, which they may not know are tied to endometriosis until years or decades later in life. Infertility is also a common issue, with up to 50% of individuals with endometriosis experiencing infertility. Disease complexity alone contributes greatly to diagnostic delay. For example, the invasiveness of the disease versus how superficial it is does not often correlate to the level of pain or symptoms someone experiences. “We’re dealing with more than one phenotype here, and our scope of work should include all patients’ suffering. Just because we don’t see [the disease], doesn’t mean their pain isn’t real,” said Dr. Singh.  

Societal stigma and the perception of endometriosis impacting only gynecologic health is another major reason for diagnostic delays. Endometriosis aside, “people don’t talk about periods,” noted Lauren Kornegay, patient advocate and executive director of Endo Black Incorporated. “But if we start there [and talk about periods more], we can get to a better place,” she said. Improved menstrual conversation and education particularly around pain, bleeding, and what is considered ‘normal’ could go a long way in improving the diagnosis timeline for endometriosis patients, especially teenagers. Up to 70% of teenagers with painful periods (dysmenorrhea) have endometriosis but may not know the pain they are experiencing is out of the ordinary. The disease also presents differently in teenagers, where lesions may look clear or be harder to identify; without globally adopted endometriosis imaging protocols, disease detection continues to be a challenge. Teenagers also face unique impacts when living with chronic pain that may affect their schooling or how they engage the health care system in the future. Idhaliz Flores, PhD, Professor in the Department of Basic Sciences and Department of OB/GYN at Ponce Health Sciences University, works with teenagers in Puerto Rico and has found in her early, unpublished studies that an estimated 80% of girls experience painful periods and 30% report missing school because of their pain. Olga Bougie, MD, MPH, FRCSC, Assistant Professor at Queen’s University, and her team similarly found that 25% of females with persistent pain tied to endometriosis were consistently missing school. Having menstrual health conversations early and often is key to overcome this stigma.  

Centering the Endometriosis Patient  

Centering the patient experience continues to be one of the strongest drivers for improving endometriosis outcomes, the working group agreed.  

Despite over 200 million individuals living with diagnosed endometriosis, a frequent story from patients is how lonely they felt at times. “I wish I knew that I wasn’t alone. I wish I knew who to turn to after my diagnosis,” said Lindsey Peters, a patient advocate. This loneliness, patients explain, can be amplified in the face of normalization of pain and providers who cannot, do not – or will not – hear them out when explaining symptoms or asking about treatment options. Jenneh Rishe, BSN, RN, patient advocate, founder, and Executive Director of The Endometriosis Coalition Inc., saw nice doctors and spent four years with symptoms before receiving an endometriosis diagnosis. She realized recently, after working with her therapist, that she was coping with post-traumatic stress disorder symptoms from her endometriosis journey. “I didn’t realize what I was experiencing at that time was trauma, and my brain had literally rewired itself to cope.”  

During the roundtable, patient advocates called for better resources for caregivers and improved support from employer and human resource offices to assist individuals seeking endometriosis treatment and management. Most insurance plans do not adequately reimburse for complex endometriosis surgeries; yet endometriosis is considered a disqualifying condition for active service in the U.S. military. An average of $12,118 per patient is spent on direct care costs, including surgery and prescription medications, annually. Changing health care policies to improve care access and coverage is fundamental to reducing the cost burden on patients.  

Support groups can offer hope. Many patients say finding – and at times, founding – support groups is one of the most powerful paths to healing. Kornegay founded Endo Black in 2019 after receiving a diagnosis eight years earlier. Rishe founded The Endometriosis Coalition in 2017. Patient and advocacy organizations, such as Endometriosis Foundation of American, EndoWhat, Endometriosis Association, and Endo Warriors were also highlighted during the roundtable. Connecting with other patients can remind individuals to speak up when it comes to their care. “Patients are the only reliable narrators of their experience,” said Heather Guidone, BCPA, patient advocate and Program Director at the Center for Endometriosis Care. Guidone urges patients, “Trust yourself, and trust your gut. You are part of your care team, and you are in charge.” Peters agreed, saying that while there’s a need for “more answers, education, empathy, research, funding, and sympathy,” sharing your story can be an invaluable part of the work, too. “When you start helping others, that’s part of your healing,” she said.  


This blog is part one of a two-part blog series summarizing takeaways from SWHR’s Endometriosis Education Working Group meeting in September 2023. To read the second part, click here.  

SWHR’s Endometriosis Program is currently supported by educational sponsorship from Sumitomo Pharma. SWHR maintains independence and editorial control over program development, content, and work products.