Addressing Adverse Childhood Experiences and Endometriosis

By Matt Phillion

A new study has found that women who experienced childhood adversity are twice as likely to be diagnosed with endometriosis—findings that add to the growing body of evidence linking early life trauma with chronic, and often undiagnosed, inflammatory conditions.

These patients often face lengthy diagnostic delays and are often simply not believed when they report their symptoms. This reinforces the urgency to take a trauma-informed, whole-person approach to care, especially in women’s health, where biases continue to cause disparities in diagnosis, treatment, and research.

“Endometriosis falls squarely within the realm of women’s health,” says Chevon Rariy, MD, Chief Clinical Innovation Officer at Visana Health. Rariy is board-certified in both Internal Medicine and Endocrinology. “It is fairly common, occurring in about 10% of women of reproductive age and 190 million women worldwide—fairly the same size patient population as diabetes.”

Symptoms including stomach pain, bleeding, and irregular periods, can start as soon as puberty, and are rooted in the chronic inflammation of the uterine lining, its hallmark being when the uterine lining is found outside the uterus, such as the Fallopian tubes or other nearby organs. It can often cause scarring and other complications over time, including infertility, incontinence, debilitating pain, and more.

“And it can take a substantially long time to diagnose,” notes Rariy. “Up to 10 years for many patients, despite how common it is. This is because women are not listened to when complaining of pain, or it is dismissed as a normal part of the menstrual cycle—something they just have to live with—which can be internalized.”

Not only does diagnosis have a long tail, but half of patients are offered surgery as a remedy such as a hysterectomy and oophorectomy, but 75% of those surgeries are unnecessary, Rariy explains.

“We now know that these surgeries are very comorbid and come with life limiting side effects,” says Rariy. “For example, patients who are interested growing their family will no longer be able to carry a child. If their ovaries are removed, their hormones are completely disrupted, and at the same time, hormone replacement therapy has plummeted—they are not being offered this therapy that can protect their heart, decrease their risk of cardiac disease, of stroke, improve their brain, bone, and mental health.”

According to Rariy, a more conservative therapy can be offered and have a longer-lasting impact through holistic lifestyle changes and an integrated, whole-person approach to patient care.

The cost of endometriosis isn’t just pain and health struggles for the patient—there is a massive cost to the unnecessary surgeries as well.

“It is estimated that $22 billion annually is lost in terms of lost productivity and healthcare costs,” she says. “It is both very costly and highly morbid and so an earlier diagnosis, with earlier, trauma-informed treatment and conservative therapies are ways in which we can improve outcomes and improve the patient experience.”

Adverse childhood experiences

The study validated many things Rariy and her colleagues see in their day-to-day practices, she notes.

“There is a growing body of evidence that what we’ve seen as physicians and specialists in clinical practice is validating the direct link between early life trauma with chronic inflammatory conditions, such as endometriosis,” says Rariy. “Yet, endometriosis is one of the most misunderstood and underdiagnosed.”

There is a fine line between what is normal in terms of pain, and pain itself is very subjective, Rariy explains.

“Many patients have their pain diagnosed as just ‘part of being a woman,’ especially if you’ve had an adverse childhood experience,” says Rariy. “There’s a biological process that can account for the increased development of endometriosis. This study was observational, but we know there is a gland in the brain that produces a signal to the adrenal glands to secrete and regulate cortisol. And it is integral in stress response. When a child is experiencing stress, there’s an excess of cortisol production.”

That fight or flight reaction, the release of hormones that regulate the sympathetic nervous system and also cortisol is mobilized, which can influence metabolism, immune responses, and other responses in the body.

“If you’re chronically stressed, that trauma can result in a chronic elevation of cortisol, leading to downstream dysregulation and suppression of some of those receptors,” says Rariy. “You’ve got these high amounts of cortisol, and our receptors are being downregulated, so the body is not responding to it as much. And the hormonal imbalances disrupt the feedback process that regulates pain, inflammation, and more.”

This can lead to a very disrupted production of estrogen, progesterone, or other hormonal releases. In addition, cortisol is rhythmic—it is highest in the morning and lowest at night, allowing you to sleep. But when chronically stressed, it can interfere with that rhythm, which can lead to inflammation, which can then contribute to worsening of endometriosis.

“You can see there is this very complex feedback loop that is disrupted, and if we think about endometriosis, this link underscores that it’s not just a reproductive disorder, it’s a whole-body condition shaped by early life experiences,” Rariy says. “The body internalizes these disruptions, and it has a lasting impact on the perception of pain.”

How new care models can help

Visana Health wants to change how conditions like endometriosis can be addressed.

“We recognize many of these things are interrelated and interlocking, and that treatment is holistic. It’s not just medication management and a loose follow up, but prioritizing listening to the patient,” says Rariy. “There’s a fine line in the continuum when menstrual pelvic pain is not normal and in order to unpack that you need to listen, and you need an environment where you have time and space to listen to the patient speaking. She knows her body best.”

Women’s health is under-researched and under-resourced, Rariy says, and so the onus is on the provider to listen and then connect that information to lived experiences.

“Trauma-informed care starts with listening and understanding the root cause and finding the connection between them,” she says. “We believe in early detection, asking better questions to better understand and determine if they are at risk.”

They work to be more accessible as well.

“This doesn’t just mean access to rural communities, but to those who need care in a quick time frame, or those who have been dismissed by their health system. Maybe they’ve had symptoms but they weren’t listened to, and so they’ve disengaged from their health for years,” says Rariy. “And we want to integrate medical, behavioral, and lifestyle care to not just treat or manage the disease but to prevent escalation and stop further symptoms in their tracks.”

The process is working—roughly 35 million women have access to Visana and they are able to avoid surgical intervention in about 78% of cases, as well as reducing time to diagnosis.

“We want to improve the patient experience, but through the lens of a comprehensive strategy,” says Rariy. “We want to improve outcomes that can both improve costs and improve population health: to improve both the cost of care and the standard of care.”

Changing and improving women’s health is a multi-pronged approach, Rariy notes.

“We need a partnership between providers, health systems, national payers, and with the patients themselves, providing an environment in which they feel comfortable reengaging with the health system,” says Rariy. “It’s really going to be a group effort and we all have aligning incentives to make it happen.”

Matt Phillion is a freelance writer covering healthcare, cybersecurity, and more. He can be reached at matthew.phillion@gmail.com.