(086) MEDICAL GASLIGHTING AND VULVOVAGINAL PAIN DISORDERS
Authors: Moss C , Skovronsky G , Holloway J , Lorenzini S , Kopits I , Rieff M , Mitchell L , Krapf J , Pukall C , Goldstein A 
Published: June 2024

Introduction

Gaslighting is a form of epistemic injustice that involves testimonial injustice, in which patient’s experiences are discounted by others. The incidence of epistemic injustice has been described in a number of pain conditions including chronic fatigue syndrome and fibromyalgia, as well as in marginalized obstetric populations. Little research has been directed towards epistemic injustice in populations seeking treatment for benign gynecologic conditions or the unique context of vulvovaginal pain conditions. Additionally, little is known about the consequence of this type of injustice on patient’s perception of their care or willingness to seek care.

Objective

The purpose of this study was to develop a patient-validated instrument to measure patient experience of epistemic injustice in their past gynecologic care and to use the instrument to explore patient experiences in a vulvovaginal pain referral center.

Methods

An instrument was designed by the study team to quantify the incidence and distressed caused by gaslighting in patients seek care for vulvovaginal pain conditions. This was created based on common themes from written testimonials of patients available from National Vulvodynia Association. After construction, the instrument was submitted for feedback to officers from two vulvovaginal pain disorder patient societies. The survey was modified to include the feedback from these sources. The survey was then completed by patients establishing care with the clinic prior to their first appointment.

Results

187 patients completed the survey in part or in full. Patients reported having seen an average of 5.7 providers prior to presentation. Patients felt supported by only 42% of past providers. Patients felt belittled by 27% of past providers. Patients felt 21% of past providers did not believe their symptoms. 45% of patients were told they “just needed to relax more”; 18% percent were recommended to drink alcohol to improve their condition; 55% considered giving up seeking care because they felt their concerns were not being addressed; 31% were told their symptoms were caused by high levels of anxiety; 22% were referred to psychiatry without other medical treatment for their symptoms; 19% felt unsafe during a medical encounter. 39% percent of patients were made to feel they were “crazy” and this was the most distressing of the questions asked (average 7.3/10 on a likert scale for distress for patients who had experienced this).

Conclusions

A survey based on patient concerns and validated by patients affected by vulvovaginal pain conditions has not been previously reported. This instrument was applied to a patient population at a large referral center for vulvovaginal pain conditions and the results showed that patients commonly experienced many forms of epistemic injustice, and greater than half of patients consider cessation of care for their condition because of these experiences.

Disclosure

Any of the authors act as a consultant, employee or shareholder of an industry for: Dr. Jill Krapf is a medical advisor for Evvy. Dr. Andrew Goldstein is a part time Employee of Daré Bioscience. He is a member of the board of directors of The Gynecologic Cancers Research Foundation. He is an advisor for: AbbVie, Incyte, and the National Vulvodynia Association. He has received research funding from Incyte.