Three male doctors told me the same thing: My ovaries weren’t making me sick.
In the seven years I’ve spent living with multiple sclerosis, I’ve become carefully attuned to what “normal” feels like for my body. I knew that excruciating groin pain, discharge, bleeding and bouts of constipation weren’t normal.
Years earlier, I’d seen a doctor who suggested I had polycystic ovary syndrome, or PCOS. Though I’d never been formally diagnosed with the condition, it seemed like a plausible explanation for my symptoms. My doctors didn’t agree. One of them suggested I was anxious because I had “a big vacation coming up.” Another said I might have injured my hip exercising.
Two months later, an ER doctor diagnosed me with PCOS. Not vacation jitters.
While the days of “female hysteria” diagnoses are supposedly far behind us, I’m far from the only woman who’s gone through the experience of seeking out care only to have her symptoms diminished and her mental health questioned.
“Too frequently I’ve had [female] patients referred to me with physiological symptoms who were assumed to be experiencing this pain due to anxiety,” says Stephanie Woodrow, a certified mental health clinician. The medical gender bias is also well-documented in research, with one 2018 study concluding that “women are less likely than men to survive traumatic health episodes” for this very reason.
Here are stories from five women who fought to get the right diagnosis.
“If I hadn’t advocated for myself, I’m not sure what would have happened.”
Rebecca, 35, Virginia Beach, Virginia
Diagnosed with: Somatic symptom disorder due to stress
Actually had: An abscessed tooth
Severe pain on the right side of Rebecca’s face made her feel like she was “being electrocuted 20–30 times per minute.” It was just stress, according to her dentist. A neurologist came up with a more specific diagnosis, “atypical facial pain due to stress,” and suggested therapy. Soon after, she began taking multiple antidepressants, plus a medication for neuralgia and anxiety.
New symptoms piled up: Rebecca developed bad headaches, nerve damage in her right eye and hearing loss in her right ear. Four months after she’d first seen her dentist, a neurosurgeon specializing in facial pain requested an MRI and diagnosed Rebecca with “trigeminal neuralgia” caused by a tooth infection.
In total, Rebecca saw two primary care physicians, one chiropractor (25 visits), two urgent care physicians, two dentists (five visits total), three neurologists, one eye doctor, one oral surgeon, one endodontist, one neurosurgeon and two therapists — and spent one night in the ER — before she got a proper diagnosis.
“If I hadn’t advocated for myself,” she says, “I’m not sure what would have happened.”
“If you have a medical condition that is undiagnosed, no amount of over-the-counter remedies are going to resolve that.”
Lisa, 58, New York City
Diagnosed with: Pelvic pain
Actually had: Endometriosis
Lisa had been dealing with severe cramping for more than 30 years, ever since she’d “started having regular cycles.” When she described the problem to doctors, their go-to answer was Advil or something comparable. Other recommendations included exercise, dietary changes and being “less indulgent and weak.” “There was always an implication that I was making too big a deal out of my symptoms,” Lisa says.
A friend suggested Lisa visit a specialist to investigate the pain. A “complete workup” pointed to fibroids, and the doctor recommended their removal. What was supposed to be a simple procedure, Lisa says, turned into complex surgery on account of “the worst case of endometriosis” the doctor had ever seen.
Lisa finally has relief from the pain she lived with for her entire adult life. “If you have a medical condition that is undiagnosed,” she says, “no amount of over-the-counter remedies are going to resolve that.”
She still struggles to trust doctors fully. She spent too long fighting to be believed.
“No one should have to dress up for the ER”
Grace, 32, Western Pennsylvania
Diagnosed with: Stress, fainting, attention-seeking
Actually had: Sick sinus syndrome — “My heart was stopping and I needed a pacemaker”
Grace had developed extreme fatigue, along with cold hands and feet. She’d also begun fainting. One time, she says, it happened at a friend’s house: “I was in junky clothes with my hair in a messy bun because I was in the middle of helping a friend move.” At the ER, a doctor commented on her appearance, admonishing her for not “cleaning herself up.”
“No one should have to dress up for the ER,” she says.
Doctors initially told Grace she was probably just anxious. The terms “hysterical” and “attention-seeking” came up too. In all, it took three years, five cardiologists, multiple neurologists and countless ER trips for Grace to be diagnosed with sick sinus syndrome, a rare heart-rhythm disorder. During that time, Grace’s family went into debt seeking medical opinions. She also sustained numerous head injuries from fainting, leaving her with memory loss and other permanent neurological impairments.
“If I had been taken seriously from the start,” Grace says, “I would be in a very different place today.”
“All treatments have been intense and exhausting.”
Disnie, 25, New York City
Diagnosed with: Stress, anxiety, stomatitis and a viral infection
Actually had: Pemphigus vulgaris
Disnie struggled to eat after developing sores in her mouth, which were accompanied by extreme exhaustion. Her doctor said that “stress, anxiety and lack of rest” had made her susceptible to viral infection, and advised her to consult a psychiatrist or psychologist.
Over the span of four months, Disnie saw approximately 30–40 doctors before a dermatologist diagnosed her with a rare autoimmune disease called Pemphigus Vulgaris and prescribed medication to manage the resulting pain.
Disnie says the doctors she saw didn’t expect a woman in her 20s to have the condition, since it usually affects people over 40. Still, she says, “I was sad to express my pain to the doctors and to be told it’s not anything to worry about.”
“I never gave up hope that I would find a way to not only survive, but thrive.”
Kim, 46, Phoenix, Arizona
Diagnosed with: Hemorrhoids
Actually had: Stage-4 colorectal cancer
At 35, Kim went to see her doctor about constipation. Colon cancer runs in her family; her dad had been diagnosed at 46. Her doctor dismissed her concerns, saying she was “too young for cancer.”
Eleven months and 10 doctors later, Kim went to urgent care for a persistent cough. A chest X-ray revealed lesions in her lungs and breast. After the discovery of rectal, lung and liver tumors, she was diagnosed with Stage IV cancer and given six months to live.
After another oncologist gave Kim a better prognosis, she began prescribed chemotherapy and radiation right away. “I never gave up hope that I would find a way to not only survive, but thrive,” Kim says.
She proceeded to endure 75 rounds of chemotherapy and go under the knife 16 times. Now, as an 11-year survivor of colorectal cancer, Kim works at the Colorectal Cancer Alliance in Phoenix.