June 8, 2018 -- When Katy Seppi first got her period, the pain was so debilitating that she frequently missed school.
“I also had really heavy periods,” she says. “In high school, my mom taught me to use two super tampons at once so I could go to school. My dad once had to take me to the hospital because I was having such bad pelvic pain on one side. But the ER doctor just said that I was probably ovulating and it was normal to have more pain with ovulation.”
Over the next 20 years, she saw a wide range of doctors, seeking relief from the monthly misery of her menstrual cycle.
“I saw gynecologists, family physicians, gastroenterologists, naturopaths,” says Seppi, now a 36-year-old social worker for an Atlanta nonprofit. “None of them could figure out what was wrong. The GI doctors told me I probably had irritable bowel syndrome. With the gynecologists, I was told, ‘Oh, that’s just what having a period is.’ Some thought my symptoms were psychological and asked if I had been sexually abused when I was younger.”
It was only after she had trouble getting pregnant and then began pursuing fertility treatments at age 34 that Seppi finally learned the answer: She had endometriosis, a painful disorder in which tissue that normally lines the inside of the uterus -- the endometrium -- instead grows outside the uterus.
“The reproductive endocrinologist suspected my diagnosis within 5 minutes of talking to me, and she was the first doctor who ever mentioned this disease to me,” says Seppi. “By the time I was diagnosed, my illness had gotten so bad that my ovary was adhered to my uterus, both ovaries were full of blood-filled cysts, I was having back and hip issues, and in pain daily.
“In the past 2 years, I have had two laparoscopic surgeries -- one was 6 hours long and included a hysterectomy. I have so much anger and pain about how long it took me to get diagnosed and treated. It meant over 20 years of severe pain, and it cost me my fertility.”
Seppi’s experience with endometriosis is one shared by hundreds of thousands of women. The American College of Obstetricians and Gynecologists estimates that while endometriosis affects 1 in 10 women of reproductive age, it takes an average of 6 to 10 years for an accurate diagnosis after the first symptoms appear.
Delayed and missed diagnoses are common for women with many other disorders as well:
- Heart disease: Women have a 50% higher chance of getting an incorrect initial diagnosis, even after having a heart attack.
- “Women in almost all age groups also have higher rates of death during hospitalization for heart attack than men do,” says Elsa-Grace Giardina, MD, a professor of medicine and founder of the Center for Women’s Health at the Columbia University Medical Center in New York. That disparity is particularly high in the under-50 population, when women are more than twice as likely to die in the hospital as are men.
- Stroke: Women are about 30% more likely than men to have symptoms of a stroke misdiagnosed and be erroneously sent home from the emergency room. And even once they are diagnosed, women are less likely to receive the clot-busting drug tPA than men.
- Autoimmune diseases: Many autoimmune diseases, including multiple sclerosis, lupus, rheumatoid arthritis, and thyroid disorders, are more common in women. Overall, 75% of Americans with autoimmune diseases are women, and it takes a person with an autoimmune disease an average of 4.6 years and five doctors before getting a correct diagnosis.
- Pain: Women have a lot more trouble than men do in getting pain taken seriously, whatever the cause. For example, a study found that women who go to the emergency room because of abdominal pain -- not related to pregnancy or a known injury -- were less likely to get pain meds or opiates and waited longer to get the meds. And a report called “The Girl Who Cried Pain” found that women are not only less likely to receive aggressive treatment when diagnosed with pain, they’re also more likely to have their pain dismissed as “emotional” or “not real.”
Marjorie Jenkins, MD, says that many of the delays and misdiagnoses affecting women can be traced back to how doctors and other health professionals are educated. In 2016, she published the first national student survey of sex and gender in medical education, which found that only 43.1 % of students report that their curriculum has given them a better understanding of sex and gender medicine, and only 34.5% report they would feel prepared to manage sex and gender difference in health care.
“To this day, we are still teaching the next generation of providers unisex medicine,” says Jenkins, the founder and chief scientific officer of the Laura W. Bush Institute for Women’s Health at Texas Tech University Health Sciences Center. “And when you look at research, beginning with animal studies, three-quarters of the studies are done in male animals, even in diseases that predominantly affect women. So it shouldn’t be surprising that when you go to your doctor’s office, there might be some inherent, implicit bias that providers aren’t aware of, because it’s been taught to them since they were starting out.”
What's the Problem?
Experts say other things can make it difficult for women to get an accurate diagnosis.
Different symptoms. In some cases, women and men have different symptoms when they have the same condition -- and doctors are more used to recognizing the male version. For example, while chest pain is the most commonly reported symptom of a heart attack in men, women typically also report subtler signs such as fatigue, indigestion, shortness of breath, and pain in the neck, jaw, or arms. Women and their doctors alike are more likely to attribute these symptoms to other causes, like stress or the flu.
Lack of research. For decades, the male body was the standard for health and disease in medical research. Even though Congress passed a law in 1993 requiring clinical trials studying diseases and treatments to include women as well as men, more recent studies suggest that not nearly enough progress has been made in including women in health research and understanding how being a woman affects health.
It’s all in your head/you’re overreacting. “Women with endometriosis are often told, ‘This kind of pain with your period is normal,’ and made to think they’re overreacting,” says Jeffrey Arrington, MD, a gynecologic surgeon at the Center for Endometriosis Care in Atlanta. Tennis star Serena Williams knew she had a higher chance of getting a blood clot after her C-section in 2017, so when she felt short of breath, she immediately told her medical team she needed a CT scan and blood thinners. But at first, the nurses told her she was just confused. Then the doctors gave her an ultrasound, which showed nothing. Only when they acceded to Williams’ demands for a CT scan did they find the life-threatening blood clots.
It’s a woman thing. Some doctors tend to assume difficult-to-diagnose symptoms in women must have a gynecological cause, and they miss other possible conditions that may be causing them.
That was the case for Genevieve Murphy, a lawyer from New Jersey. In college, she began having abdominal pains so severe that they frequently sent her to the hospital.
“I would get nauseated, I couldn’t walk, I had to put myself in super-hot baths or lie down in the shower with hot water streaming on me,” she recalls. These unexplained episodes of acute pain persisted for more than 15 years, as doctors asked her what kind of birth control she used, and at various times suggested that she must have ovarian cysts, a sexually transmitted disease, or be miscarrying an unknown pregnancy. Other theories that proved false included kidney stones and appendicitis, but doctors kept returning to potential gynecological causes.
Murphy finally solved the mystery herself when she began keeping a food diary, and realized that each pain episode happened after she’d eaten one of two foods: bananas and avocados. “It turned out that I’m allergic to them,” she says. “But when the doctors can’t figure a woman’s health problem out, they just send you back to the gynecologist.”
Delays, Mistakes Magnified by Race
The problem of delayed and missed diagnoses is even worse for women of color. While Serena Williams was able to push back against a dismissive medical system and get treated for her life-threatening blood clots, black women overall are three to four times more likely than white women to die of pregnancy-related complications.
In New York City, a 2016 analysis found that college-educated black women were more likely to have severe complications of pregnancy or childbirth than white women who never graduated from high school.
“Why would that be?” asks Nancy C. Lee, MD, a member of the board of directors of the National Black Women’s Health Imperative. “Some may be intrinsic health issues for black women compared with white women, but that is not the whole story.”
“Black women are also even more commonly affected than white women by many conditions that have a tendency to be misdiagnosed, including autoimmune conditions such as lupus, which is two to three times more common in women of color than white women, as well as fibroids, which are almost three times more likely to occur in black women,” says Lee, who’s also former director of the U.S. Department of Health and Human Services Office on Women’s Health.
“We need a lot more research to understand misdiagnosis better, in order to figure out how to make changes at all levels, from patients to doctors to the whole health care system.”
What You Can Do
What can women do to improve their chances of getting an accurate, prompt diagnosis?
- Trust your instincts. “You know your body and you know when something isn't right,” Seppi says. “I doubted myself for a long time because I saw so many different doctors who were telling me nothing was wrong. I would start thinking that maybe I just had a low pain tolerance or that the pain was normal.”
- Don’t assume you’re “too young to have anything seriously wrong.” For example, says Giardina, “we start too late in the management of cardiovascular disease for women.” She points out that newly understood things that contribute to heart disease -- such as gestational diabetes and pre-eclampsia during pregnancy, as well as the chronic inflammation that accompanies conditions like endometriosis and rheumatoid arthritis -- can add to a woman’s chances of having heart disease. “We need to start paying closer attention when women are young to factors that can, over time, put them at significant risk.”
- Keep records. Genevieve Murphy solved her own medical mystery when multiple specialists couldn’t, by keeping a food diary. Keep a journal of your symptoms, noting when they tend to flare and what you were doing/eating/experiencing when they happened. Keep notes from all medical visits
- Prepare to see your doctor. “Think about what is most important to you to get out of the limited face time you’ll have,” says Jenkins. She recommends choosing your top three health concerns and writing down exactly what you want your doctor to know about them. Bring those records you’ve been keeping. And be honest with your doctor about what worries you: For example, if you have persistent headaches that you fear are signs of a brain tumor, don’t dismiss your worries as too silly to tell them.
- Ask questions. If you’re prescribed a treatment, ask if it’s the right treatment for you and if it was studied in people like you. There are no stupid questions. Make sure you understand what your health care professional is telling you. Try saying it back to them. Ask again if you’re not clear.
- Be persistent. Seek a second opinion -- and a third, and a fourth. Try different kinds of doctors in different specialties. Make sure they know what tests and evaluations you have already had done. “Doctors may dismiss you and your symptoms. Keep searching for one that won't,” says Seppi.
- Use your power. “Women often feel like the doctors are the ones with the power in the health care system, but you have the power of seeking out a new provider,” says Jenkins. “If you don’t feel like your doctor is treating you like a partner in your care, go and find a new doctor.