The Many Pains of Endometriosis

According to the World Health Organization, endometriosis is a condition that impacts almost 10% of reproductive age women globally. It's a huge number and though symptoms can vary from patient to patient, many suffer from severe pain. To further complicate things, diagnoses are often delayed for years and there is no known cure. Akshitha Sahu looks at how endometriosis treatment has changed over time to shed light on how our medical system treats women’s health and mental health more broadly.

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In recent years, the intersection between physical health and mental health has gained much-needed attention in medical discourse. We talk about the mind-body connection in incredibly diverse contexts, though usually positively, like how a positive outlook on life can strengthen your immune response. Still, the mind-body connection entails some ideas that are not as pleasant. Individuals who live with chronic pain can attest to the agonizing mental health impacts. Our medical institutions are still working to integrate chronic pain and mental health care. 

A factor that can worsen an individual’s experience with pain and mental health is their gender. Women often express a feeling of being left out of their own healthcare plan due to their testimony being perceived as less credible. These lapses, especially in conditions that are focused on chronic pain, lead to misdiagnosis, delay in diagnosis, and unnecessary pain for the individual. 

The evolution of our healthcare system’s methods for handling the condition of endometriosis serves as an instructive mirror, reflecting the evolution of our understanding and management of both women’s reproductive health and chronic pain.

Endometriosis is a complex gynecological disorder that is characterized by the presence of uterine-like tissue outside the uterus. The external tissue mimics the behavior of the uterus, leading to severe, life-impacting pain that is intensified during menstruation.

Today, we see an average of a four to eleven year delay for a woman to be diagnosed with endometriosis, and though a large part of this is due to undetectable symptoms, even when symptoms are detected they can be misdiagnosed when the concerns of women are not heard for what they are. 

A convenient diagnosis

While the link between chronic pain and mental health may seem obvious to us today, the fields of pain management and mental health have seen many ups and downs in their co-evolution. For centuries, women were diagnosed with “hysteria,” an ostensible disease that sought to explain almost any behavior in women that was out of the ordinary. It was used to explain, or rather ‘explain away’, conditions as far ranging as chronic pain, post-traumatic stress disorder, depression, blindness, hearing loss, seizures, amnesia, uncontrolled bodily movements, paralysis, heart palpitations, emotional outbursts, fainting, loss of sensation, hallucinations, and even infertility.

Female hysteria was one of the most commonly diagnosed “disorders” throughout the 18th and 19th centuries, so much so that the belief of the time was that women were predisposed to having mental disorders (resulting in physical manifestations). Symptoms of endometriosis were often diagnosed as hysteria. 

Though hysteria is no longer a part of modern nomenclature in the diagnosis of endometriosis, symptoms of endometriosis may still be dismissed as simply ‘somatization,’ where chronic pain is explained away as expressing psychological distress through physical symptoms. While psychological factors often do play a role in how pain is experienced and managed, dismissing chronic pain as normal menstrual pain or simply explaining that the symptoms are “just in your head” can lead to a lack of adequate medical care and impact a woman’s quality of life.

While pre-existing mental health conditions can exacerbate the experience of physical pain, we are seeing more research today on how the causality can also go in the other direction–the presence of the severe chronic pain increases the risk of depression and other psychiatric comorbidities. A recent clinical study detected depression in 86% of patients experiencing chronic pain with endometriosis. In patients with endometriosis but no chronic pelvic pain, depression was detected in 38% of participants.

An inconvenient treatment

There is no known cure for endometriosis today. However, physicians have developed various treatment plans to handle symptoms as well as explored preventative measures. These methods have changed quite a bit over time, to put it mildly. 

One of the most common advice women received all the way up to the 1970s in the U.S. was that pregnancy could effectively prevent the disease. They were motivated by healthcare professionals to become pregnant because the increase in progesterone levels that come with pregnancy could control the growth of the uterine lining.

Joe Vincent Meigs, an OB-GYN in the 1930s, wrote that the “avoidance of endometriosis through early marriage and frequent childbearing is the most important method of prophylaxis.” His concept that the best ‘solution’ for endometriosis is frequent pregnancy was echoed by many. 

However, research has since disqualified pregnancy as a treatment because, though women do experience symptom relief during pregnancy, those effects are only temporary. Needless to say, treatment for endometriosis has evolved quite a bit, including hormone therapy, pain management, excision surgery to remove endometrial tissue, and ablation surgery to destroy the endometriosis cells. 

Modern treatments for endometriosis often involve hormone therapy. This approach is sometimes described as inducing a “pseudopregnancy” because it aims to mimic the hormonal environment of pregnancy without actual conception. Hormone therapy works by regulating or suppressing the hormonal fluctuations that drive the growth of endometrial tissue. 

Though the mechanisms are not fully understood, it is believed that the therapy increases progesterone levels (often called the “pregnancy hormone”). Ultimately, this hormonal manipulation may lead to the atrophy of the ectopic (endometrial tissue growing outside the uterus) endometrial tissue, reducing inflammation and alleviating symptoms. 

However, while hormone therapy can be effective in managing symptoms, it does not eradicate the disease, and ongoing research is necessary for developing more targeted and lasting treatments.

Confronting the cycle

Though recommending pregnancy to patients with endometriosis may not have been the most effective, we did learn that certain hormones may help reduce the effects of endometriosis symptoms. 

Still, one of the most important additions to care we’ve evolved for people with endometriosis receive today is pain management treatment and counseling. There is a high degree of stress that an individual goes through in the process of diagnosis, treatment, and recovery that makes a sizable contribution to the mental health of the individual, and it is important to acknowledge this in treatment plans. 

At its core, the mind-body connection between chronic pain and mental health is like a cycle: chronic pain can worsen an individual’s mental health, and the lower someone’s mental health dips, the more acutely they feel the stress of their condition. As medical care continues to evolve, integrating mental health care into pain management strategies becomes increasingly important. 

The historical context of women’s health care in America provides a backdrop for understanding these changes, highlighting the progress made and the ongoing challenges faced by women. By examining the intersection of chronic pain and mental health through the lens of endometriosis, we gain valuable insights into the broader implications for women’s health and well-being.

Akshitha Sahu is a junior at the University of Michigan majoring in Anthropology with an interest in the intersection of culture and medicine. She works as a medical assistant and as a pediatric endocrinology research assistant. In her free time, she enjoys hiking and spending time with her dog, Laila. 

All opinions expressed here are solely of the author and do not reflect the views of the author’s employer.