Words Matter: Patient Experiences While Seeking Diagnosis for Pelvic, Vulvar and/or Vaginal Pain Conditions

Clinical Trial Title

Words Matter: Patient Experiences While Seeking Diagnosis for Pelvic, Vulvar, and/or Vaginal Pain Conditions

Contact Information

Jennifer Romanello

Clinical Trial Protocol Description:

Storytelling mediums have highlighted patients who report their pain being dismissed and normalized when seeking diagnosis and treatment for chronic pelvic, vulvar and/or vaginal pain (CPVVP) conditions. The prevalence of chronic pelvic pain is between 5.7% and 26.6%, according to a systematic review of prevalence studies from multiple countries. Although these conditions are not uncommon, many patients with different causes of CPVVP will attend numerous office visits before receiving a proper diagnosis.

In a study of patients with provoked vestibulodynia, 35% of participants attended more than 15 appointments and 37% reported more than 36 months between first symptoms and receiving a diagnosis. Studies on patients with endometriosis have shown a delay of 3-11 years between the onset of pain symptoms and proper diagnosis.

This study asks participants about their overall perceptions of how much they felt their symptoms of pain were taken seriously while seeking diagnosis for the CPVVP condition(s). Additionally, this study asks about specific statements doctors have said to patients that may contribute to patients reporting they felt their pain was not taken seriously. The list of statements for this study were collected from various patient accounts.

We hope this study has the potential to improve doctor-patient communication and to help patients in the future with these conditions receive more prompt diagnosis and treatment.

Clinical Trial Eligibility Criteria:

In order to participate you must meet the following criteria:

  • Be 18 years or older
  • Be fluent in reading and writing in English
  • Have received a diagnosis from a doctor of having a pelvic, vulvar and/or vaginal pain condition, such as:
    • Adenomyosis
    • Chronic Pelvic Inflammatory Disease
    • Chronic Pelvic Pain Syndrome
    • Endometriosis
    • Interstitial Cystitis
    • Pelvic Congestion Syndrome
    • Pelvic Floor Dysfunction or Pelvic Floor Muscle Hypertonia or Myofascial Pelvic Pain Syndrome or Levator Ani Syndrome
    • Pudendal Neuralgia
    • Vulvodynia or Vestibulodynia
    • Vaginismus or Genitopelvic Pain/Penetration Disorder (GPPD)

This is a partial list of inclusion and exclusion criteria.

Study Details

Clinical Trial Investigator

Azra Sadikovic, MD

Contact Information

Jennifer Romanello

Clinical Trial Location

Rush University Medical Center


Rush University Medical Center

1620 W Harrison St
Chicago, IL 60612

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