By Gabriella Watson, MS, Science Programs Coordinator
Endometriosis is a chronic gynecological condition that affects approximately 6.5 million women of reproductive age in the United States. Endometriosis is especially common among people in their 30s and 40s, however, anywhere from 19-73% of adolescents (ages 10 to 19 years) also have endometriosis.
Endometriosis occurs when tissue resembling the lining of the uterus (the endometrium) grows where it does not belong – typically within the pelvic cavity (ovaries, fallopian tubes, bowel, or outer surface of the uterus). This tissue may thicken and bleed during the menstrual cycle, which can cause swelling and pain. Endometriosis symptoms vary greatly from person to person and can often go unrecognized. These symptoms may include chronic pelvic and back pain, heavy menstrual bleeding, pain during sex, gastrointestinal issues, and infertility, among others. Read more about the signs and symptoms of the disease in SWHR’s Endometriosis Toolkit: A Patient Empowerment Guide.
Endometriosis incurs significant physical, emotional, and financial burdens. Nearly 95% of people with endometriosis report at least one or more additional chronic conditions and up to half of people with endometriosis suffer from fertility issues. People with endometriosis report higher rates of chronic stress, anxiety, depression, and decreased quality of life.
Current Diagnosis and Treatment
Although the condition was first identified over 115 years ago, little is understood about the underlying biology, causes, and different types of endometriosis.
To this day, there is no validated set of questions that health care providers can use to routinely screen for the condition, and according to one study, 25% of general health care providers do not think they have enough knowledge to diagnose or treat endometriosis. As such, people with endometriosis experience significant delays in diagnosis, are misdiagnosed with other chronic conditions, and may experience their symptoms being overlooked due to the stigma surrounding menstrual issues and the dismissal of women’s pain.
The new “Below the Belt” documentary – for which SWHR attended a special screening on Capitol Hill earlier this month – puts a face to these challenges and tells the stories of four endometriosis patients searching for answers about treatment, and their journeys revealing widespread problems in the U.S. health care and research ecosystems.
There remains no cure for endometriosis and few treatments options exist. Birth control and pain management are two of the primary non-surgical treatment options, but they do not guarantee symptom relief. Laparoscopic surgery has historically been considered the “gold-standard” for diagnosing and treating endometriosis, however, the procedure is invasive, expensive, and has high rates of recurrence.
Advances in Endometriosis Care
There have been advancements in diagnostic and treatment options. The use of biomarkers, such as certain proteins found in the blood or urine, is under investigation as a way to indicate the presence of endometriosis. Additionally, new imaging techniques, such as magnetic resonance imaging (MRI) and transvaginal ultrasounds (TVUS), can help visualize the presence of lesions and other abnormalities without the need for an invasive procedure. While still in the early stages of development, these interventions hold great promise for improving the accuracy and accessibility of diagnosing endometriosis.
Researchers are also exploring non-surgical treatments that aim to provide more effective relief from symptoms and prevent disease progression, including new oral medications and nanotechnology. There is also growing interest in and recognition of the benefits of complementary therapies, such as acupuncture, yoga, physical therapy, and the importance of diet and exercise, to help manage symptoms and improve quality of life.
Calls to Action
Research Funding. These innovations highlight the critical role of research in exploring the underlying biology of endometriosis and developing new tools to diagnose and treat this condition. In 2022, the National Institutes of Health (NIH) budget allocated $16 million (0.038%) towards endometriosis – just $2.00 per patient per year. (By comparison, diabetes among women has a similar prevalence rate to that of endometriosis, but receives 1,500% more funding, at $31.30 per patient per year.) Increased research funding for endometriosis is crucial to improve early detection, timely treatment and management, and ultimately, to improve the quality of life for those with endometriosis.
Awareness and Education. Greater awareness can encourage more people to seek care for symptoms, promote earlier diagnosis and treatment, reduce stigma, and provide better support for those affected by endometriosis. Some awareness efforts that have taken place this month include the following:
- On March 3, 2023, Senators Shelley Moore Capito and Tammy Duckworth reintroduced a resolution to designate March 2023 as “Endometriosis Awareness Month,” a resolution that was formally endorsed by SWHR. By designating a month for endometriosis awareness, policymakers increase public knowledge about this condition and its impact on millions.
- As part of its work on endometriosis awareness, the “Below the Belt” film team is calling for a congressional hearing on endometriosis to address gaps in research funding and provider education.
- The newly released Uterine Health Guide by Myovant Sciences and Pfizer aims to help people better understand their periods and uterine health, and features resources from uterine health organizations like SWHR, Red Alert, and The White Dress Project.
- SWHR continues to promote its Endometriosis Toolkit: A Patient Empowerment Guide to promote living well with endometriosis.
This Endometriosis Awareness Month—and every month—SWHR and its partners work to advance research, policy, and education on endometriosis and improve the lives of those affected. While there is no cure in sight yet, we believe that a successful diagnosis and lifelong wellness is within reach.
Are you living with endometriosis, or are you a caregiver for someone living with endometriosis? Sharing your story can do great power in raising awareness and influencing policy. Share your story with SWHR by visiting swhr.org/shareyourstory.
For more information and resources regarding endometriosis visit: