It was the height of the pandemic when Umbereen Sultana Nehal, MD, MPH, MBA, an adjunct instructor at MIT Critical Data, saw her periods getting longer and heavier, a symptom of her diagnosed endometriosis. But she also had fibroids, which were increasing her blood loss. Soon she was feeling faint in the shower and getting breathless just brushing her hair.

She had been avoiding the hospital because of the pandemic, but her blood loss was too much to ignore so she went to the emergency department.

“I went to a hospital that had my records of prior surgeries for endometriosis and fibroids, so they had all the information they should have needed to take me seriously,” Sultana Nehal told Medscape Medical News. The doctor who saw her was dismissive and said, “I don’t think your hemoglobin is going to be a 7 or anything, but we’ll get the tests. I really think you should get some mental health help, actually.” Just 2 minutes later, Sultana Nehal recalls, the nurse stopped by and said her hemoglobin was 7 mg/dL.

The experience led her to begin researching medical mistrust; she presented a poster at the annual American College of Obstetricians and Gynecologists meeting that showed substantial medical mistrust in women discussing endometriosis online, with somewhat less mistrust noted for those discussing menopause.

“These findings highlight the need for tailored education and engagement strategies that build trust and address how patients express concerns across different women’s health conditions,” wrote Rajesh Jain, of Noble and Greenough School in Dedham, Massachusetts, and her coauthors.

The researchers collected 1000 of the most recent posts from the Reddit communities r/Endometriosis and r/Menopause, and a pool of trained reviewers coded 200 posts per condition as “medical mistrust” or not using an adapted version of the Medical Mistrust Index. It included criteria such as believing information has been withheld or manipulated, doubting that clinicians have a patient’s best interest in mind, discriminatory treatment, referencing unethical experimentation or historic systemic abuse, and a preference for alternative medicine specifically because of systemic mistrust.

Coding was based on the VADER score, which evaluates the emotional tone of short-form text, with a 0 score being neutral.

Menopause scored nearly neutral overall, with a score of 0.076, while endometriosis scored negative overall at -0.294. About twice as many endometriosis posts (16.8%) as menopause posts (7.8%) indicated medical mistrust.

The results point to systemic failures to meet patients’ needs for complex medical conditions, Sultana Nehal said. “Because this is a systemic failure, we need systemic responses,” she said.

At the same time, women’s health experts acknowledge ways in which clinicians can help address this mistrust and potentially reduce the likelihood of it in their own practices.

Though Unsurprising, Findings Are Revealing

The research is helping Sultana Nehal’s work after founding HER Heard, a nonprofit that aims to educate and connect women with clinical shared decision-making tools online that can help them better prepare for interacting with the medical system for specific problems.

“The nature of women’s health is that it’s often understudied, underbelieved, under-everything,” Sultana Nehal said.

That reality resonated with all the physicians MedscapeMedical News interviewed for this story, none of whom were surprised by the findings.

Doctors should pay attention to the results. “The internet is a really safe place for people to express their frustration with the medical system,” said Tami Rowen, MD, MS, an ob/gyn at the University of California San Francisco who specializes in sexual health, menopause, and transgender health.

Some of what patients view as disingenuity on the physician’s part may be a lack of education, knowledge, experience, or just confusion about what to do, said Hugh Taylor, MD, a professor of ob/gyn and reproductive sciences at Yale School of Medicine, New Haven, Connecticut.

The conditions studied here — endometriosis and menopause — are ones where there’s a lot of debate, misinformation, and confusion within the medical community, said Taylor.

Daniel Ginn, DO, interim division director and fellowship program director for Minimally Invasive Gynecologic Surgery at the University of California Los Angeles, said the results of the study are consistent with what he hears all the time as a pelvic pain and endometriosis specialist.

“A lot of endometriosis patients have been told their symptoms weren’t real in the first place,” Ginn said. “The understanding of endometriosis as a disease process has always been weak, and over the last 20-30 years has become much more of a niche specialty.”

Angela Wilson, MD, an ob/gyn at Montefiore Einstein Advanced Care in New York City, noted the various factors that lay the foundation of medical mistrust.

“You have all the historical abuses and unethical research that has gone on in the past, and you have patients just having negative past healthcare experiences, maybe because they felt dismissed or because of bias or discrimination they experienced,” Wilson said. “When you add on top of that a condition that is difficult to diagnose…it adds another layer,” she said.

And then there is the substantial amount of inaccurate medical information propagated on social media, Ginn said.

Menopausal Care Has Made Big Strides

The Boomer generation would probably describe a profoundly different level of mistrust about menopause recommendations and management than younger women because they were the generation subjected to the first round of the Women’s Health Initiative, which was badly interpreted and badly applied, Ginn said.

“There’s a more concerted effort now with menopause care to have evidence-based recommendations. In the currently perimenopause-aged patient, I think there’s a lot more trust about menopausal care because patients are seeking that care out and are actually finding [doctors] who are more equipped than they’ve been in the past,” he said.

Menopause is actually a prime example of showing how education and communication can help decrease the level of mistrust, Wilson said.

Still, the condition is complex enough that medical mistrust continues to exist. While menopause is a universal condition, its symptoms are not, and it’s often hard to tease out whether something is due to hormonal fluctuations or aging or something else, Rowen said.

Taylor also noted the time it takes to sort through all the potential symptoms of menopause beyond vasomotor effects. “It’s a conversation that really takes a bit of time to develop and some expertise on the physician’s side.”

However, menopause is a condition for which it’s usually easier to provide a sustainable treatment plan, whereas managing endometriosis changes over time, often unexpectedly.

Endometriosis’ Complexity Can Engender Mistrust

The high level of medical mistrust involving endometriosis surprised no one, particularly considering the average patient has to see five doctors over an average of 10 years before they get the right diagnosis, Taylor said.

Ginn noted another reason for greater medical mistrust with endometriosis than with menopause: there’s not an endpoint. Menopause has a much more predictable onset, duration, and ending.

The average endometriosis patient has been having symptoms since menarche that have evolved over time, he said. Many endometriosis patients also haven’t received adequate imaging — ultrasound and MRI imaging provide a far more comprehensive view of the pelvic region but it isn’t available everywhere.

Pain Conditions Commonly Provoke Mistrust

Though Sultana Nehal’s research focused on two conditions, many other women’s health conditions can result in medical mistrust, the doctors said. One is polyendocrine metabolic and ovarian syndrome (PMOS), previously called PCOS, Ginn said. The renaming of the condition alone reveals how much has been learned about it and its need for multidisciplinary care.

Another is vulvodynia, a condition for which many Ob/Gyns haven’t received adequate training, said Taylor. Any pain condition in women is likely to engender medical mistrust because women are so often labeled as “histrionic” — itself a misogynistic term, Rowen notes — or anxiety-ridden.

Rowen sees lots of mistrust with any sexual pain disorder. “Almost universally, patients feel dismissed, gaslit, and misunderstood when they present with sexual pain,” she said. “There’s even less training in that than in endometriosis and menopause across medical specialties.”

Responding to Patients

The key to responding to both patients who mistrust medicine and those who present with complex or unexpected symptoms is to listen, validate, and, when necessary, refer, the doctors said.

“It’s a lot of listening and saying, ‘I believe you. This is a real condition,’” Rowen said. Doctors may sometimes inadvertently dismiss what’s happening if they can’t explain it, she said. “What I often say is, ‘Even if I can’t explain why this is happening, it doesn’t mean it’s not happening, and it doesn’t mean we’re not going to treat it or try to help you.’”

Ginn agreed, noting that many patients experiencing endometriosis and pelvic pain have lost jobs, relationships, opportunities, and overall quality of life due to their condition. Patients may come into the office feeling defensive because they’ve been forced to advocate for themselves in the past and may expect a doctor will tell them they are exaggerating their symptoms.

Know When to Refer

Ginn told Medscape Medical News what he tells his residents: “It’s okay if you don’t know what to do, but at a minimum, you should know when to refer.” When patients haven’t responded to first-line and second-line treatments for something complex, it’s time to refer.

He also provides a list of questions to ask so they don’t miss a diagnosis. There are so many symptoms that patients aren’t going to mention, but if you ask about them specifically, they will, he said.

Ob/gyns are in a difficult position with a lot of women’s health conditions because the generalist ob/gyn is similar to a general internal medicine doctor who has to “maintain a high level of knowledge on an incredibly broad scope of topics,” Ginn said. “Ultimately that highlights the importance of utilizing specialists within your community and having a reasonable threshold by which to refer a patient.”

But physicians should also take the time to educate themselves in ways that are far easier — and more efficient — than ever before, Taylor said.

“There are so many short videos about all these topics on medical education sites where physicians can watch a brief video and really learn a lot,” he said. “Physician continuing education has really improved, and physicians have an obligation to be lifelong learners and continue to keep updated on whatever they’re treating.” 

In addition, “a little humility goes a long way,” he said. “Don’t be afraid to say, ‘I’m not an expert in this, and I’m going to send you to someone who is.’”

The research was funded by the MIT Sandbox Fund, MIT VMS, NSF-iCorps, and Dr Leo Celi. Sultana Nehal reported being the founder of HER Heard. Rowen reported being an advisor for Roon Health and MCG Health. Ginn, Taylor, and Wilson had no disclosures.

Tara Haelle has covered science and medicine for nearly two decades and is author of Vaccination Investigation and The Informed Parent: A Science-Based Resource for Your Child’s First Four Years. She is based in Dallas.