The complex relationship between endometriosis and medical trust

Key takeaways:

• Delay in diagnosis and treatment of endometriosis can lead to patient disillusionment in physicians.
• Spreading accurate information through social media can help to regain patient trust.

In June 2022, PBS debuted Below the Belt, a documentary executive produced by Hillary Rodham Clinton. This thought-provoking film introduced viewers to four remarkable women grappling with the debilitating effects of endometriosis.

Their compelling narratives revealed the painful journey of delayed diagnoses and ineffective treatments. Through their stories, the documentary’s creators cast a spotlight on systemic issues within the health care system, the conduct of physicians, deeply entrenched societal taboos, gender biases, and the daunting financial barriers to accessing care.

Regrettably, the portrayal of the medical profession is less than flattering, depicting doctors as often misinformed and dismissive. The question arises: Is this portrayal warranted?

A complex condition

Endometriosis, a complex gynecologic condition, involves the growth of glandular tissues resembling the uterine lining in various body locations, primarily affecting the pelvis and reproductive organs, but may involve other areas and organ systems. These tissues can give rise to a wide array of distressing symptoms.

Alarmingly, approximately 10% — 190 million — of women and girls of reproductive age worldwide contend with endometriosis, with many enduring symptoms that profoundly diminish their quality of life. Nevertheless, endometriosis remains an enigma, marked by elusive diagnosis and challenging treatment.

Specialized medical training inherently fosters doctors’ expertise in specific medical domains. Specialists excel in caring for patients whose conditions neatly align with their areas of proficiency. For instance, urologists adeptly handle pain emptying the bladder caused by infections, whereas general surgeons confidently address abdominal discomfort stemming from bowel obstructions.

Yet, when symptoms defy easy categorization, frustration often ensues. Patients — many who have patiently waited for appointments and undergone numerous tests — may hear that their condition falls outside the specialist’s domain, leaving them without a clear diagnosis or treatment plan. This situation is undeniably exasperating, especially for the patient.

A ‘diagnostic quandary’

Endometriosis embodies this diagnostic quandary. It typically presents with symptoms such as abdominal or pelvic pain, severe menstrual cramps, painful intercourse and fertility issues. Additionally, it can manifest with bowel or urinary symptoms, including painful or frequent urination, painful bowel movements, constipation, bloating, fatigue and back pain. Patients may experience one or a combination of these symptoms, which can evolve over time.

The extensive range of symptoms spanning multiple bodily systems complicates diagnosis, as the list of potential underlying conditions becomes vast. In some cases, endometriosis may even remain asymptomatic, only detected incidentally during unrelated surgeries or imaging studies. This complexity underscores the challenges both patients and doctors face in identifying and managing this condition.

In contrast, certain diseases with multisystem symptoms do not pose such a diagnostic challenge to clinicians. Consider diabetes, for example. Despite its vague symptoms, a simple blood glucose test effectively rules in or out diabetes. The ease of this test, along with straightforward results interpretation, facilitates the diagnosis of diabetes, even in cases where symptoms could indicate various other ailments.

The crux of the issue with endometriosis lies in the absence of a straightforward diagnostic method. There is no reliable blood test for endometriosis, and the definitive diagnosis requires the surgical excision of tissue samples for laboratory examination. Surgery, significantly more invasive than a blood test, carries a higher risk of complications.

Consequently, surgical intervention to achieve diagnosis is often only offered to women with severe symptoms. For those with milder symptoms, a presumptive diagnosis may be made based on medical history, physical examination findings and imaging scans, with decisions about surgical diagnosis postponed based on the response to endometriosis medical treatments.

Given the vague and overlapping nature of symptoms, coupled with time spent awaiting response to medical therapies and possible surgical risks, an accurate diagnosis of endometriosis can be delayed for 7 to 12 years. During this time, women often undergo testing for a range of conditions, from life-threatening to benign, with treatments aimed at alleviating symptoms and ruling in or out potential diagnoses based on treatment responses, while disease and symptom progression may worsen.

Once a diagnosis is established, treatment options must be considered. Drawing a parallel to diabetes, patients exhibit individual responses to various treatment regimens. Despite the best available treatments, including surgery, some women continue to endure symptoms throughout their lives. The reasons behind this persisting suffering remain elusive. For chronic pain, in particular, the nervous system may become “rewired” over time, and this phenomenon appears irreversible even if endometriosis tissue is treated or removed. This can be deeply distressing and challenging to accept.

Address patient disillusionment through social media

Given the frustrations stemming from delayed or elusive diagnoses, unmet expectations regarding treatment outcomes and the side effects of treatments, coupled with the need for multiple doctor visits and extensive testing, feelings of being dismissed, discounted and disbelieved along the way are not surprising. These emotions contribute to a growing disillusionment with the medical profession.

So, what steps can the medical profession take to address this disillusionment? First and foremost, it is important to acknowledge that things are not entirely bleak. Nurses and doctors remain the most trusted professionals in the U.S.

Not every health care provider can be an expert in every area of medicine, but a willingness to learn from one another and from patients is vital. Sharing years of knowledge and experience with peers and the general public can help bridge the information gap.

In an era where social media plays a significant role in health information dissemination, the health care community must engage proactively and be sources of evidence-based practices and new medical knowledge. Currently, nonexpert influencers far outnumber genuine experts on mainstream social media platforms. Unfortunately, fear of engaging in online discourse and the failure of these platforms to adequately recognize true experts have left an educational void.

The emergence of next-generation, health-focused social media platforms promises to revolutionize the perception of doctors by the public. On these newer, safer platforms, health care professionals can engage with the public without fear, promoting constructive dialogue and valuable insights. This can only enhance the relationship between doctors and patients, ultimately benefiting both parties.

For more information:

Alan Gaffney, MD, PhD, is a practicing intensive care physician and co-founder of Tell, a social media community of verified health care experts. He formerly was the associate medical director of the cardiothoracic ICU at Columbia University Medical Center. Reach him at agaffney@tell.health.

Linda Yang, MD, MS, is a practicing gynecologist and gynecologic surgeon at Northwestern Medicine and an associate professor in minimally invasive gynecologic surgery at Northwestern University Feinberg School of Medicine. Reach her at linda.yang@nm.org; X (Twitter) @drlindayang.