5 actions needed to improve endometriosis health outcomes
Endometriosis is a chronic and painful inflammatory disease affecting an estimated 176 million women worldwide, according to the World Endometriosis Society (1). This condition occurs when the tissue that normally lines the inside of the uterus (the endometrium) grows outside the uterus, causing inflammation, pain, and other complications. Despite its prevalence, endometriosis remains largely misunderstood and underdiagnosed, often causing women to suffer in silence for years before receiving proper treatment.
The exact cause of endometriosis is not fully understood. It is thought to be related to a combination of genetic, hormonal, and environmental factors. Women with a family history of endometriosis or who have never given birth are at a higher risk of developing the condition (2). While endometriosis affects people of all races and ethnicities, there are significant disparities in the diagnosis, treatment, and management of endometriosis among Black, Indigenous, and People of Color (BIPOC) women (3).
Studies have found that BIPOC women are more likely to experience longer delays in getting an accurate diagnosis and have a higher risk of receiving inadequate pain management compared to white women living with endometriosis. Furthermore, BIPOC women may also face challenges in accessing quality, culturally relevant healthcare and specialty care, which can make these disparities much worse (3).
There are several reasons for these disparities, including bias and discrimination in the healthcare system, limited access to resources and information about endometriosis, and differences in cultural attitudes towards pain and healthcare-seeking behaviors.
It is essential to address these disparities and work towards improving equitable access to quality healthcare and resources for all women living with endometriosis, regardless of their race or ethnicity (3).
The symptoms of endometriosis can vary widely from woman to woman but often include (2):
chronic pelvic pain which can be severe, interfering with day-to-day activities,
painful periods,
painful sex,
fatigue/tiredness, and
infertility.
While there is currently no cure for endometriosis, there are several treatment options available that can help manage symptoms and improve quality of life. These include:
pain medication,
hormone therapy, and
surgical procedures such as laparoscopic surgery to remove endometrial tissue.
Many women living with endometriosis may struggle to find effective treatment options or are unable to access care due to financial or logistical barriers (2).
A recent systematic review shows that Black women living with fibroids or endometriosis experience worse clinical and surgical outcomes than their White counterparts.
Differences in the occurrence of uterine fibroids and endometriosis among different racial groups can be attributed to various factors, such as exposure to potential causes of the conditions, limited access to quality health care services, including specialists in gynecologic surgery, and prejudice and unfair treatment within the health care system (3).
5 Strategies to Improve Health Outcomes
Endometriosis is a challenging and often debilitating condition that affects millions of women worldwide. To address this issue, the first step needed is to increase awareness and education about endometriosis, improve diagnosis and treatment, increase support for women living with endometriosis, empower women to advocate for themselves, and support research and advocacy efforts.
#1: Increase Awareness and Education
One of the biggest challenges in addressing endometriosis is the lack of awareness and understanding surrounding the condition. Many women may experience symptoms of endometriosis but are unaware of what is causing their pain or are hesitant to seek help. Healthcare providers may also be unfamiliar with the condition or may not be trained to recognize the signs and symptoms of endometriosis.
To address this issue, we need to increase awareness and education about endometriosis among both patients and healthcare providers (4) This could include culturally tailored health education campaigns and materials to raise awareness about the condition and training programs for health care providers. By improving knowledge and understanding of endometriosis, we can help ensure that women receive the care and support they need.
#2: Improve Diagnosis and Treatment
Endometriosis is notoriously difficult to diagnose, and many women may experience a delay in receiving an accurate diagnosis. This can lead to years of pain and discomfort, as well as a higher risk of complications such as infertility. Improving the diagnosis and treatment of endometriosis is critical for improving outcomes and quality of life for women living with this condition.
To achieve this, we need to invest in research to develop better diagnostic tools and treatments for endometriosis. We also need to ensure that women have access to the care they need, regardless of financial or logistical barriers. This may involve improving insurance coverage for endometriosis treatments and expanding access to specialized care for women with endometriosis (4). There is also a need to increase funding for research. Research studies need to be inclusive and ensure diverse women are included in the research studies.
#3: Increase Support for Women living with Endometriosis
Living with endometriosis can be incredibly challenging, both physically and emotionally. Women living with endometriosis may struggle with chronic pain, fatigue, and infertility, as well as anxiety, depression, and social isolation. Unfortunately, many women with endometriosis may not have access to the social support they need to manage these challenges.
To address this, we need to increase support and resources for women with endometriosis. This could include support groups, counseling services, and educational programs to help women manage their symptoms and improve their quality of life (5). Work also needs to be done to reduce the stigma surrounding endometriosis to ensure that women feel supported and validated in their experiences and encourage them to seek medical help early.
#4: Empower Women to Advocate for Themselves
Women living with endometriosis may face significant barriers to accessing care, such as dismissive attitudes from healthcare providers, lack of insurance coverage, or long wait times for appointments. To overcome these barriers, women living with endometriosis need to be supported so they are empowered to advocate for themselves and their healthcare needs.
This may involve providing women with information about their rights as patients, as well as resources for finding supportive healthcare providers and navigating insurance coverage. It may also involve encouraging women to speak up about their experiences with endometriosis and to demand better care and support from the healthcare system.
#5: Support Research and Advocacy Efforts
Finally, we need to support research and advocacy efforts aimed at improving outcomes for women with endometriosis. This could involve supporting organizations or groups of expert researchers, clinicians, and patients who are dedicated to endometriosis research and advocacy, as well as participating in clinical trials and other research studies (6).
It is high time that we take action busting the myths and highlighting the real impact of living with endometriosis so women can receive the best possible care and support. Also, so we can continue to make progress in understanding and addressing this complex condition. By working together, we can help improve outcomes and quality of life for women with endometriosis and ensure that they receive the care and support they need.
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References
The World Endometriosis Society. Endometriosis: what is endometriosis? Accessed February 16, 2023. https://endometriosis.org/endometriosis/
National Institute of Child Health and Human Development. Endometriosis. Accessed February 17, 2023. https://www.nichd.nih.gov/health/topics/endometriosis
Racial disparities in uterine fibroids and endometriosis: a systematic review and application of social, structural, and political context Katon, Jodie G. et al. Fertility and Sterility, Volume 119, Issue 3, 355 - 363. https://doi.org/10.1016/j.fertnstert.2023.01.022
Endometriosis. Accessed February 17, 2023, from https://www.who.int/news-room/fact-sheets/detail/endometriosis
The Endometriosis Foundation of America. Endometriosis: A Patient’s Guide. Accessed February 19, 2023. https://www.endofound.org/patients
As-Sanie, S., Black, R., Giudice, L. C., Gray Valbrun, T., Gupta, J., Jones, B., Laufer, M. R., Milspaw, A. T., Missmer, S. A., Norman, A., Taylor, R. N., Wallace, K., Williams, Z., Yong, P. J., & Nebel, R. A. (2019). Assessing research gaps and unmet needs in endometriosis. American Journal of Obstetrics and Gynecology, 221(2), 86–94. https://doi.org/10.1016/J.AJOG.2019.02.03