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New Endometriosis Report Highlights its Misunderstood Etiology

Expert panel showcases barriers to both diagnosing and treating this painful, chronic condition

A PPM Brief

Painful and chronic, endometriosis affects 10% of reproductive-age women, costs an estimated $69.4 billion per year in excess health expenditures, and reduces workplace productivity by an average of 6.3 hours a week. These statistics—and recommendations for getting past them—are outlined in a new report from the Society for Women’s Health Research (SWHR).1 The report is based on a roundtable-style dialogue consisting of leading clinicians, patients, and researchers, hosted by the nonprofit.

Clinical guidelines for endometriosis, which have not been updated in 5 to 10 years, indicate the current standard for definitively diagnosing the disease is laparoscopic biopsy, an invasive and sometimes risky procedure, cites the report. Part of the issue is that the etiology of endometriosis is not fully understood. For starters, its most common symptom—chronic pelvic pain—is not specific to endometriosis and may be caused by a variety of other conditions. In fact, many factors are considered to play a role in the disease’s pathogenesis (eg, genetics, immune dysfunction, inflammation) while some experts think it is an amalgamation of disorders. The simple fact is that no validated set of screening questions and no noninvasive diagnostic tool exists. As a result, nearly three-quarters of women with the condition are misdiagnosed, with many having to wait 7 to 12 years after the onset of pain symptoms to obtain an accurate diagnosis. This delay in diagnosis not only degrades the patient-provider relationship but also often leads to long-term physical and emotional damage, notes the report.

(Source: 123RF)

When a diagnosis is finally made, the treatment options—including, in general, NSAIDs, hormones, and surgical removal—are limited. Approximately 11 to 19% of women report no improvement in pain with medical therapy and recurrent pain is common after treatment cessation. In addition, the available therapies (eg, combined hormonal contraceptives, progestins, gonadotropin-releasing hormone agonists and antagonists) may produce significant side effects and are not viable when a patient is pregnant or trying to get pregnant.

Another major barrier to assessing and treating this disease has to do with clinical training around the condition. According to the SWHR report, half of healthcare providers surveyed could not name three of the main symptoms of endometriosis. The report also discusses serious obstacles in access to treatment.

Looking ahead, SWHR recommends more funding and research be dedicated to understanding the underlying biology of the condition and its subtypes in hopes of finding new therapeutic avenues. The nonprofit suggests a particular focus on alternatives to hormonal therapy (eg, modulating angiogenesis or neuroinflammation) as many patients are unable to tolerate these first- and second-line approaches. SWHR also advises a multidisciplinary, patient-centric approach, ideally through specialized centers of expertise.

Last updated on: September 12, 2019
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