In a new cross-sectional study, researchers quantified the pervasive experience of medical gaslighting among patients with vulvovaginal disorders, revealing that more than half of surveyed patients considered ceasing care altogether because of dismissive clinical encounters.

The researchers developed a patient-centered survey instrument, in collaboration with the National Vulvodynia Association and Tight-Lipped, to systematically assess adverse experiences in vulvovaginal care. The research underscored the prevalence of dismissive behaviors that cause significant patient distress and may delay appropriate diagnosis and treatment.

Key Findings

The researchers analyzed surveys from 447 patients (mean [SD] age = 41.7 [15.2] years) seeking care at a vulvovaginal disorder referral clinic between August 2023 and February 2024. Patients reported seeing a mean (SD) of 5.50 (4.53) past clinicians for their condition. The survey findings indicated concerning patterns of dismissive care:

• Patients reported that a mean (SD) of 43.5% (33.9%) of past practitioners were supportive, 26.6% (31.7%) were belittling, and 20.5% (30.9%) didn't believe the patient.

• A total of 236 patients (52.8%) were told that their physical examination findings were normal despite reporting substantial pain.

• 186 patients (41.6%) were told they just needed to relax more.

• 92 (20.6%) were advised to drink alcohol.

• 236 (52.8%) considered stopping care because their concerns weren't addressed.

• 92 (20.6%) were referred to psychiatry without medical treatment.

• 72 (16.8%) reported feeling unsafe during a medical encounter.

• 176 (39.4%) said they were made to feel “crazy”—the most distressing surveyed behavior—rated at a mean (SD) of 7.39 (3.06) on a numerical distress scale (0 to 10).

Older patients reported fewer negative experiences, with the study noting a negative association between higher age and reported negative clinician behaviors, including clinicians making patients feel their symptoms weren't believed.

Thematic Analysis

The researchers conducted qualitative analysis of 1,150 patient quotations, identifying major themes of clinical knowledge gaps and dismissive behaviors:

• The most common theme was clinicians who were dismissive or didn't listen to the patient (211 quotations).

• Additional themes included clinicians ignoring physical symptoms in favor of mental health discussions (120 quotations) and generally poor bedside manner (105 quotations), such as rushed visits and lack of empathy.

Patient Testimonials

One patient reported: “I did give up, and it's cost me my whole adult life. Very little intimacy, so no boyfriends, no husband, no kids. I have a comfortable life but it's not the one I wanted and it's very lonely.”

Another described the mental health consequences of their negative experiences: “I not only have felt providers thought I was crazy, but now I believe that I am crazy. This doesn't make any sense anymore, and I feel as though perhaps they are correct about it being in my head.”

Regarding clinical knowledge gaps, one patient stated: “It's just so crazy to me how every medical professional I've seen has had such little knowledge on sexual dysfunction. They have just sent me around from doctor to doctor hoping somebody will figure it out.”

Study Limitations

The researchers acknowledged that the survey instrument hasn't been statistically validated and that recall bias is likely. The study was limited to a single clinic population, which may have reduced the generalizability of findings to more diverse socioeconomic and racial or ethnic groups. The researchers also noted that their findings may underestimate the true extent of the problem, as patients who fully abandoned care weren't represented in the survey.

Clinical Implications

The findings highlighted the need for systemic improvements in the clinical management of vulvovaginal disorders. The study authors concluded: “There is an urgent need for education supporting a biopsychosocial, trauma-informed approach to vulvovaginal pain and continued development of validated instruments to quantify patient experiences.”

Disclosures are reported in the study, including advisory roles held by several authors.

Source: JAMA Network Open