The Silent Struggle: How Endometriosis and Fibromyalgia Are Misunderstood and Underfunded

Chronic pain is a reality that affects millions of people worldwide, but when it comes to women’s health, the experience of pain is often misunderstood, dismissed, and underfunded. Two of the most prevalent and debilitating chronic pain conditions—endometriosis and fibromyalgia—disproportionately affect women. Despite their widespread impact, these conditions remain underdiagnosed, poorly understood, and tragically underfunded, leaving many women to suffer in silence for years before receiving appropriate care.

Endometriosis: A Complex, Yet Overlooked Condition

Endometriosis is a painful condition in which tissue similar to the lining of the uterus grows outside the uterus, causing chronic pain, infertility, and a range of other symptoms. It affects approximately 1 in 10 women of reproductive age globally, yet it takes an average of 7-10 years for a woman to receive an accurate diagnosis after the onset of symptoms (Endometriosis Foundation of America, 2021). The delay in diagnosis is partly due to the tendency for medical professionals to dismiss symptoms as “normal” period pain or to attribute them to stress or anxiety. As a result, many women suffer unnecessarily, with untreated endometriosis leading to more severe symptoms over time, including chronic pelvic pain, painful intercourse, heavy menstrual bleeding, and gastrointestinal issues.

The financial and emotional toll of endometriosis is immense. According to a 2020 study published in Human Reproduction, the condition costs the U.S. healthcare system an estimated $119 billion annually, due to lost productivity, healthcare costs, and treatments. Yet, despite its prevalence and impact, research into endometriosis lags behind other conditions. Only $2 million in federal funding was allocated to endometriosis research in 2019, compared to $41 millionfor prostate cancer, a condition that affects far fewer individuals (National Institutes of Health, 2020). This stark disparity in funding highlights a critical issue: women’s health, particularly when it involves chronic pain, remains underprioritized in research and healthcare policy.

Fibromyalgia: An Invisible, Misunderstood Condition

Fibromyalgia is another chronic pain disorder that predominantly affects women, with an estimated 80-90% of those diagnosed being female (National Fibromyalgia Association, 2021). This condition is characterized by widespread musculoskeletal pain, fatigue, sleep disturbances, and cognitive difficulties. Despite its prevalence—affecting roughly 4 million adults in the U.S.—fibromyalgia is often met with skepticism and misdiagnosis. The lack of a definitive diagnostic test, coupled with the invisible nature of the condition, means that many women are told their symptoms are psychological or "all in their head," further perpetuating the stigma surrounding chronic pain.

A 2017 study published in The Journal of Pain found that fibromyalgia patients waited an average of 2-3 years before receiving a diagnosis, with many experiencing a long journey of dismissal by healthcare professionals (Lombardo et al., 2017). The lack of understanding of fibromyalgia among medical practitioners, along with the absence of a cure or standardized treatment protocols, leaves many women frustrated and without proper care. As with endometriosis, the funding for fibromyalgia research is alarmingly low. In 2019, the U.S. government allocated only $10.8 million for fibromyalgia research, a mere fraction of the amount allocated for other diseases, like multiple sclerosis (National Institutes of Health, 2020).

The Gendered Nature of Misunderstanding and Underfunding

Both endometriosis and fibromyalgia exemplify the gendered nature of chronic pain conditions. While the exact causes of these conditions are still not fully understood, hormonal factors, genetics, and environmental influences likely contribute to the heightened prevalence among women. However, much of the medical research on chronic pain has historically been male-centric, with clinical trials and studies often excluding women or not accounting for gender differences. As a result, healthcare systems have developed with a bias toward male physiology, failing to recognize the unique ways in which pain manifests in women’s bodies.

This gap in research translates into a lack of proper diagnostic tools, inadequate treatments, and persistent misdiagnosis. Women are often told that their pain is psychological, or that they are simply exaggerating their symptoms. This not only delays treatment but also leads to mental health issues, such as depression and anxiety, as women’s pain is ignored or trivialized. A 2019 study published in The Lancet found that women with chronic pain conditions like fibromyalgia were more likely than men to experience depression and anxiety as a result of being dismissed by healthcare providers (Fillingim, 2019).

Moreover, this gender bias extends to funding and policy. Women’s health issues—especially those related to chronic pain—have historically been underfunded in medical research. The National Institutes of Health (NIH) has consistently allocated far fewer resources to conditions like endometriosis and fibromyalgia compared to other diseases that predominantly affect men, such as prostate cancer. This lack of funding leads to a significant research gap, leaving doctors with few evidence-based treatments to offer their patients.

The Need for Change: Advocating for Research and Better Care

Addressing the issues surrounding endometriosis and fibromyalgia requires a multifaceted approach, starting with increased research funding. A 2020 report from the Endometriosis Foundation of America calls for greater federal investment into endometriosis research, citing that it has been underfunded for decades despite its widespread impact on women’s health. Similarly, the Fibromyalgia Research and Education Act introduced in Congress in 2020 aims to increase federal funding for fibromyalgia research and improve education about the condition for healthcare providers.

Beyond funding, there needs to be a cultural shift in the medical community. Healthcare providers must be trained to recognize the unique ways in which women experience and express pain. This includes providing education about the gendered nature of pain, as well as adopting a more compassionate, patient-centered approach to care. For women living with endometriosis, fibromyalgia, and other chronic pain conditions, the validation of their symptoms and the creation of individualized treatment plans can make a world of difference.

Patients themselves also play a vital role in advocating for their own care. Women should feel empowered to seek second opinions, demand proper diagnostic tests, and push for treatments that address the root causes of their pain. Support groups, advocacy organizations, and social media platforms have created spaces where women can share their experiences and raise awareness about these underfunded, misunderstood conditions.

Conclusion

Endometriosis and fibromyalgia are just two examples of how women's chronic pain conditions have been dismissed, underfunded, and misunderstood. The gendered disparities in healthcare—from delayed diagnoses to inadequate treatment options—highlight the urgent need for change. Increased funding for research, better education for healthcare providers, and a more empathetic, patient-centered approach to care are all essential to addressing the pain health gap. Until these changes are made, women will continue to struggle in silence, often facing years of suffering before receiving the care they desperately need.

References

• Endometriosis Foundation of America. (2021). Endometriosis Facts. Retrieved from https://www.endofound.org
• Lombardo, R., et al. (2017). Delayed Diagnosis and Underdiagnosis of Fibromyalgia. The Journal of Pain, 18(5), 523-531. doi:10.1016/j.jpain.2017.02.004
• National Fibromyalgia Association. (2021). Understanding Fibromyalgia. Retrieved from https://www.fmaware.org
• Fillingim, R. B. (2019). Gender Differences in Chronic Pain: Implications for Understanding the Gender Pain Gap. The Lancet, 18(9), 612-622.
• National Institutes of Health. (2020). Research Funding Statistics. Retrieved from https://www.nih.gov