Pelvic Pain Patients Often Face Medical Gaslighting
/By Crystal Lindell
Doctors are telling women with pelvic pain disorders to drink alcohol, learn how to relax, or get psychiatric care to treat their symptoms, according to a new study in JAMA Network Open.
Researchers at The Centers for Vulvovaginal Disorders surveyed 447 patients pelvic pain, and found that medical gaslighting is common among doctors treating women with vulvodynia, endometriosis, interstitial cystitis and other pelvic conditions.
The gaslighting was so disheartening that over half of the patients (52.8%) considered ceasing care because their concerns were not being addressed. Nearly 40% of the women said they were made to feel crazy, and one in five were referred to psychiatry without any medical treatment.
Additionally, 16.8% of the patients surveyed felt unsafe during a medical exam. About a quarter of the doctors were belittling (26.6%) or did not believe the patient (20.5%). Many of the patients said their doctors lacked clinical knowledge about pelvic pain and were dismissive.
The research also included quotes from patients who were surveyed, including one from a woman about a doctor who neglected her:
"[I’ve been] told that they don't see anything or there is nothing there, despite that I was in severe pain and crying and had been in that provider's office almost every day for a week for these burning symptoms.”
As a pain patient myself, I have had the same experience. It’s difficult to explain to people who have never dealt with a long-term, complex health issue because most people still buy into the myth that doctors will do everything possible to help you. Unfortunately, that’s often not the case when it’s an ailment that’s difficult to treat or involves awkward topics like sex.
One doctor dismissed the concerns of a patient about having sex, telling her that “intercourse is overrated anyway.”
I have to confess I was shocked to read that a doctor would ever say anything as ignorant as “intercourse is overrated.” It just proves that some doctors lack empathy, because there is no way a doctor would accept that response if an ailment was impacting their own sex life.
The same patient also complained about a doctor saying her discomfort was a normal part of growing older.
“Providers that say 'it's just part of aging' don't address why it's not part of aging for my peers and even friends who are significantly older,” she said.
Which brings us to a common excuse that doctors use to dismiss patients of every age: You’re either “too young” to have a serious problem, or so old that whatever you’re experiencing must be “a normal part of aging.”
This is evidenced by another respondent, who wrote: "I have had providers simply refuse to do tests on me because they said that I'm too young to worry about reproductive issues or that my pain is 'normal for young women' or that my pain is 'probably just stress.'"
One of the best ways to combat medical gaslighting and dismissive doctors is to spread awareness about it happening in the first place.
Those abusive tactics work because patients are often made to feel like they are crazy and stay silent. However, once they see that a doctor is talking to other patients the same way, it becomes clear that the patient is not the problem – the doctor is.
Researchers said their findings show “an urgent need for education supporting a biopsychosocial, trauma-informed approach to vulvovaginal pain and continued development of validated instruments to quantify patient experiences.”
In other words, the doctors need better training. And I couldn’t agree more.
Patients don’t have the power to fix this problem on their own. It’s going to have to be the medical community that addresses it. And they can start by believing patients and showing some basic empathy.