Words Matter: Patient Experiences While Seeking Diagnosis of Chronic Pelvic, Vulvar, and/or Vaginal Pain Conditions
Authors: Romanello J , Sadikovic A , Rubin R 
Published: July 2022

Introduction

Storytelling mediums (ie: podcasts, blogs, essays) have highlighted patients who report their pain being dismissed and normalized when seeking diagnosis for chronic pelvic, vulvar, and/or vaginal pain (CPVVP) conditions. Among these stories, there are patients who, for example, were told statements from their doctors to manage pain during intercourse by having a glass of wine beforehand or that their pain is just part of being a woman.

Objective

This study aims to identify the extent to which these statements will also appear in a sample of patients with diagnoses for certain CPVVP conditions.An additional aim is to identify the extent to which a sample of patients recruited for this study felt their pain was dismissed or normalized while seeking diagnosis and treatment for CPVVP conditions. Additionally, in storytelling mediums, some patients who perceived their pain was dismissed or normalized by doctors, also experienced poor psychological health outcomes ("primary crises") and compromised wellness in different life domains - i.e., strains on relationships and finances ("secondary crises"). Medical Trauma describes how interactions between patients and medical professionals can have lasting and harmful psychological effects on patients, from the development of mental health issues to affecting the health of a patient's relationships, sense of self, work, or leisure. This study aims to identify the extent to which patients who perceive they had their pain dismissed or normalized by doctors also experience primary and secondary crises.

Methods

For this study, patient accounts from various storytelling mediums were reviewed for statements by doctors that made these patients feel their pain was not taken seriously while seeking diagnosis for the CPVVP conditions. These statements are compiled in the survey, and study participants are asked if they have been told these statements, and if so, by how many doctors. The survey also asks about the participants’ perceptions of if their symptoms were taken seriously overall while seeking care. Additionally, the survey asks participants if they have experienced different primary and secondary crises since first seeking care.

Results

The creation of the survey was informed by accounts of patient experiences from storytelling mediums. The survey will consider the extent to which experiences and perceptions of participants sampled for this study can reflect and recreate those established on storytelling mediums. IRB approval is pending, and survey results will be available by the time of the annual meeting.

Conclusions

We hope that knowledge gained from this study can benefit patients in the future. This study could allow physicians to better understand their role in contributing to or mitigating medical trauma. Words matter - statements that may make patients feel their pain is dismissed or normalized may cause long-lasting psychological harm as well as disruptions in different life domains. If physicians are able to better understand this, they can be better prepared to communicate with patients in ways that are validating and affirming. Additionally, we hope that this study could ultimately minimize the time from onset of symptoms to diagnosis of CPVVP conditions, by demonstrating the importance of validating patients' reports of their pain.

Disclosure

Yes, this is sponsored by industry/sponsor: I was chosen as a receipt of an ISSWSH Research Grant (2021) for this project. Previous title at the time of receiving the grant: “Words Matter: A Study of Medical Trauma in Patients with Chronic Pelvic Pain.”

Clarification

Industry funding only - investigator initiated and executed study

Any of the authors act as a consultant, employee or shareholder of an industry for: Sprout (Raleigh, NC), Absorption Pharmaceuticals