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Patients with vulvovaginal disorders often feel dismissed by clinicians or think about stopping treatment even though they still have symptoms, according to findings in a new study in JAMA Network Open.

In a survey given at a specialty clinic for vulvovaginal disorders, nearly 40% of new patients said they had felt gaslit or “made to feel crazy” by previous clinicians when seeking care for symptoms like vaginal itching or discomfort. More than half of patients (52.8%) considered ceasing medical care because of these experiences, while 56.8% believed other clinicians would not be able to help them.

“It surprised me that such a high percent of our population considered ceasing care and makes me think the true number is higher because more patients are represented who continued care despite their distress,” said Chailee Moss, MD, ob/gyn at the Centers for Vulvovaginal Disorders in Washington, DC, and the corresponding author of the study. 

Moss and her colleagues sought to understand how patients perceived prior experiences when seeking care for symptoms such as vulvar burning or pain. Patients establishing care at a referral clinic for vulvovaginal disorders filled out a survey between August 2023 and February 2024. 

Of the 447 survey respondents (average age, 41.7 years; 90.4% White individuals), 43.5% reported their past practitioners to be “supportive,” but roughly 26.6% said they had felt belittled. 

In response to their complaints of pain and discomfort, patients said they had been told to drink alcohol (20.6%), relax more (41.6%), or were referred to a psychiatrist but were not provided with medical treatment (20.6%). 

The survey also included open-text fields for respondents to provide further information. More than 1000 responses were grouped by theme, with the most common being frustration with clinicians’ lack of knowledge or training and needing to see multiple clinicians, emotional distress, a sense of futility, and clinician behavior such as poor bedside manner.

Moss said many clinicians do not have knowledge about diseases that cause vulvovaginal pain, such as dyspareunia and vulvar dermatitis, and do not realize their behavior “causes distress in patients,” and work within “a system that doesn't allow the time or resources to figure it out.”

Patients who do not receive adequate care could experience serious consequences. Untreated dermatologic conditions such as lichen sclerosus or neurologic conditions like pudendal neuralgia can lead to pelvic floor muscle dysfunction, in which these muscles involuntarily contract and become tight.

“This can sadly be a second source of pain,” Moss said.

Some disorders, like persistent genital arousal disorder, have been linked to elevated distress and even suicidal ideation.

Moss said clinicians should avoid recommending nonclinical solutions mentioned by patients in the surveys — such as drinking wine or other alcohol — and avoid telling patients their pain is normal.

Caledonia Buckheit, MD, an ob/gyn at Kamm McKenzie OBGYN, a private practice in Raleigh, North Carolina, said clinicians should work toward building rapport and trust.

“My advice to other doctors and advanced practice practitioners who interact with patients for vulvovaginal disorders and pelvic concerns would be to simply listen to the patient,” Moss said. “I don’t always know the answer or the diagnosis, but when I listen to my patients and partner with them to investigate their concerns, we make headway.”

No financial disclosures were reported.

Lisa Marie Basile is a freelance journalist.