These Are the Most Commonly Misdiagnosed Conditions in Women
Even though Nicole Lawson, a 53-year-old nurse in Los Angeles, spent most of her 20s and 30s with bouts of severe chest pain, her doctors told her it was stress, acid reflux, or—wait for it—all in her head. Finally, one cardiologist specializing in women’s heart health did a cardiovascular ultrasound, which showed that Nicole had coronary microvascular disease, a condition much more common in women than in men that involves blockages in the smaller arteries around the heart. It had gone undetected in the standard testing done on her by more than a dozen cardiologists.
Unfortunately, Nicole is not alone. When it comes to heart disease, recent studies show that women have a 50% higher chance than men of receiving the wrong initial diagnosis after a heart attack and are 25% more likely to be misdiagnosed after a stroke. That’s not all: One new study from the University of Copenhagen found that women are diagnosed an average of four years later than men when it comes to more than 700 diseases, and two and a half years later in the case of cancer. For women of color, the disparities in care are even greater—despite the fact that black women are often at higher risk of developing things like stroke and Alzheimer’s disease.
Why are so many women misdiagnosed?
Consider the fact that until very recently, medical research was done exclusively on white men, though the results were applied to both men and women of all ethnicities, says Mark L. Graber, M.D., the founder and chief medical officer of the Society to Improve Diagnosis in Medicine. Take the drug zolpidem, the active ingredient in the sleep aid Ambien. It was on the market for more than 20 years before researchers realized that men metabolized the drug faster, which meant the dose needed to be cut by half for women. “A lot of what we know is still based on studies of men,” he says. “And while we now understand that men and women may have different symptoms and responses to medications, clinicians aren’t taught these differences.”
While this is changing, biases play a role too, says Marjorie Jenkins, M.D., the founder of the Laura W. Bush Institute for Women’s Health at Texas Tech University Health Sciences Center. “Take a minute to Google ‘heart disease patients’ and look at the images that pop up,” says Dr. Jenkins. “You’ll see mostly pictures of men. Then Google ‘depression,’ and you’ll notice it’s all women. It may not seem like a big deal, but the results of this little test are insidious—and reflect and promote an implicit gender bias in all of us, including doctors.”
To top it off, women tend to have a different style of talking about medical symptoms than men do, says Dr. Jenkins, and it doesn’t mesh well with the amount of time the average doctor gets to spend with patients. While men often give docs a succinct list of symptoms, women are more likely to build a narrative around how they’re feeling. As you’re explaining that you threw your back out while cleaning the bathroom because your in-laws were visiting and your husband wasn’t helping because he was watching baseball, the average doctor is usually rushed and has only about seven minutes with you. “When a woman tells a story and her provider interrupts, that makes her feel undervalued and disrespected,” says Dr. Jenkins, “which may discourage her from sharing as much with health care providers—including details that might be vital to a diagnosis.” (Lesson for women: It’s smart to get to the point!)
What can we do about it?
Understanding that the problem exists in the first place is a good start, says Dr. Graber, and can inspire you to be proactive when interacting with your clinical team. If you think you’re getting the brush-off or that your doctor isn’t taking your concerns seriously, ask your provider a simple question: “What else could this be?” Dr. Graber says, “This is the universal antidote for diagnostic errors. Ideally, it will shake your doctor out of his intuitive mode of thinking and prompt him to really consider other options.”
Dr. Jenkins agrees, suggesting that you ask even more questions if you feel your doctor may be missing something. “It’s OK to ask things like ‘Is this the best drug for me?’ and ‘Is there enough data to show it’ll work as well in women as it does in men?’” she says. To help you advocate for yourself, we talked to doctors and researchers about:
Heart Disease
Part of the reason women like Nicole are misdiagnosed is that females don’t have textbook heart disease and heart attack symptoms as often as men do, says Rekha Mankad, M.D., a cardiologist and the director of Mayo Clinic’s Women’s Heart Clinic. “While chest pain is still a primary symptom, we usually see other, vaguer symptoms—like generalized fatigue, nausea, and back, neck, and jaw pain.” Add to this the fact that the standard testing physicians still use to detect heart disease was devised for, and tested on, men’s hearts, so it isn’t as good at discerning heart disease in women, who have smaller blood vessels around the heart.
If you do experience chest pain or other symptoms mentioned above, see your doctor or go to an emergency room. You’ll get an electrocardiogram (EKG), the gold-standard diagnostic test for heart attack, very early in the evaluation. Even if you don’t have chest pain, ask for an EKG and blood tests to look for a heart attack, particularly if you have risk factors for heart disease, says Dr. Mankad. “If something’s not right and the medical workup isn’t fitting what you’re feeling, it’s OK to ask for more.”
How to advocate for yourself:
Ask yourself if you have any of these risk factors:
• A family history of heart issues
• High blood pressure, diabetes, or high cholesterol
• An autoimmune disease like lupus or rheumatoid arthritis
• A history of gestational diabetes, pre-eclampsia, or eclampsia when you were pregnant
All these up your chances of both heart disease and stroke, so you’ll want to get a baseline heart-health checkup if you have any.
Autoimmune Diseases
It takes an average of five doctors and nearly four years to get an accurate autoimmune diagnosis, and women make up a whopping 75% of autoimmune disease sufferers, according to the American Autoimmune Related Diseases Association. The tricky part is that things like fatigue, mood changes, and pain are symptoms of countless conditions—including autoimmune ones—and often prompt a wait-and-see approach, says DeLisa Fairweather, Ph.D., the director of translational research at the Mayo Clinic in Jacksonville, FL.
Even if your doc orders a blood test to see if you have high levels of antibodies (which would signal that your immune system was attacking healthy cells), it can take years for those antibodies to show up in big enough numbers to be detected. “In many cases, autoimmune diseases simmer along and it takes a certain level of damage to show up on our current testing,” says Fairweather. Women may also get brushed off for “exaggerating” their pain, she adds.
Because so many parts of the body can be affected by an autoimmune condition, you might see a psychologist and two or more medical doctors. In an ideal world, all your providers will talk to one another about your case. To make this easier, try to choose a medical center where physicians who specialize in complex cases work with one another to figure out what’s going on with patients, says Fairweather. “With autoimmune conditions, if you focus on just one thing, you’ll never get a breakthrough.”
How to advocate for yourself:
If you’re experiencing symptoms, ask for a blood test that looks for antibodies for the most common autoimmune diseases—and make sure your doctor is open to continual testing. Antibodies can indicate several diseases. “Ideally, your doctor will take blood every year to look at trends and narrow down the possibilities,” says Fairweather.
Endometriosis and Polycystic Ovary Syndrome
For years, Melissa Randazzo had extremely painful periods. “Every month, the pain was so crippling, I’d miss work for days at a time,” says the 32-year-old social worker in New York City. “My gynecologist would tell me, ‘There’s nothing wrong; it’s just part of being a woman.’” It took seeing two other doctors for Melissa to be diagnosed with endometriosis, a condition in which the tissue that normally lines the inside of the uterus grows outside of it.
Leah Millheiser, M.D., director of the female sexual medicine program at Stanford University School of Medicine, says she often sees women like Melissa who’ve gotten diagnoses that range from IBS to depression. “When a woman has pelvic pain, there can be causes that are not gynecologic,” says Dr. Millheiser. “And the test for endometriosis requires surgery, which we try to avoid unless we think it’s absolutely necessary.”
Polycystic ovary syndrome (PCOS) is another condition that often goes undetected, usually because the diagnostic signs—physical symptoms (such as acne and hair on the face and body), bloodwork evidence of elevated androgen hormones, irregular or absent periods, or ovaries that look abnormal on an ultrasound—aren’t always assessed at first. “Generally you have to have two of these criteria, but many patients have normal labs and don’t have a typical PCOS appearance, and that’s when the diagnosis is missed,” says Dr. Millheiser.
First, your doctor will likely rule out thyroid disease and depression, which can present with similar symptoms. Also, if your pelvic pain gets worse just before your period starts and you’re feeling irritable or experiencing symptoms such as hair thinning or hair loss, hot flashes, or night sweats, these could be signs of perimenopause—which can begin up to 10 years before your period stops.
If your doctor prescribes a treatment for your symptoms and it doesn’t work, it’s worth reevaluating the diagnosis, says Margaret E. Long, M.D., an assistant professor of obstetrics and gynecology at Mayo Clinic. “Tell your doctor, ‘You suggested this, I tried it as long as you said I should, and it’s not working— what’s the next step?’ If you don’t get a satisfactory response—a different dose, a different therapy, or further investigation—see another doctor.”
How to advocate for yourself:
If your periods are irregular or you have some telltale signs of PCOS, mention endometriosis and PCOS to your physician.
Sleep Apnea
Until recently, sleep specialists thought that for every woman out there with sleep apnea—a disorder that increases the risk of high blood pressure, heart failure, and stroke—there were nine or 10 men with it. Thanks to research in the early ’90s that looked at both men and women, it’s now clear that the actual ratio is more like two to three men for every woman with the condition. Yet most physicians still miss the signs in women, says Grace Pien, M.D., an assistant professor of medicine at the Johns Hopkins University School of Medicine.
One reason is that women can have vague symptoms—things like chronic fatigue, feeling down, and weight gain—that prompt many docs to treat them for conditions like low thyroid and mood disorders, says Dr. Pien. “A lot of providers still have this predefined notion of a patient who has sleep apnea being a middle-aged overweight male,” she says. “This means a lot of women aren’t even asked questions about their sleep.” There’s also the fact that while many women urge their husbands to see a sleep specialist if they snore or have bouts of stopping breathing and then gasping for air in the middle of the night, men don’t often do the same with regard to their wives.
How to advocate for yourself:
Sleep apnea should be on your radar if you have PCOS, snore, are overweight, or have a family history of sleep apnea. Your risk also increases after menopause. If you’re experiencing fatigue, mood shifts, or weight gain or you feel “off” most days, discuss sleep apnea with your primary care doc.
Breast and Ovarian Cancer
With all the awareness surrounding regular screenings as well as advances in imaging technology designed to spot breast cancer, you’d think the number of misdiagnoses would be low. Yet one study found that as many as 31% of all breast cancer cases are misdiagnosed.
The issue is twofold, says Therese Bevers, M.D., the medical director of MD Anderson Cancer Prevention Center and an expert on cancer screening and early detection. In some cases (particularly with ductal carcinoma in situ, or DCIS), distinguishing between benign lesions like atypical hyperplasia and early-stage breast cancer is challenging. In other cases (especially that of invasive lobular breast cancer), the disease often doesn’t show up as a mass and may not be found via a mammogram or even a follow-up sonogram. “A woman may say one breast feels different, and when a mammo and sono are negative, her doctor might say, ‘It’s just normal changes that happen as you get older,’” says Dr. Bevers. “To some extent, you have to rely on a clinician’s ability to discern what is suspicious.”
The same is true for ovarian cancer, which can present with subtle symptoms like bloating—which prompts many docs to think it’s a GI issue, says Dr. Bevers. This, along with the fact that there’s no early-detection test, leads to diagnoses only when the cancer is advanced. In fact, according to the American Cancer Society, only about 20% of ovarian cancers are found at an early stage.
When you’ve had a colonoscopy, seen a gastroenterologist, and changed your diet to manage symptoms and you don’t have answers (or feel better), ask about having a CAT scan or an MRI—or get a referral to an ovarian cancer specialist, says Dr. Bevers. “When the workup is negative but symptoms persist, you need to keep circling back,” she says. “You’ve got to be your own best advocate.”
How to advocate for yourself:
After a breast cancer diagnosis, get a second opinion to confirm the diagnosis and plan of action. The same goes if you’ve been told you don’t have cancer but symptoms tell you something’s not right. Also, tell your doc about bloating, stomach pains, or other issues in your belly that could indicate ovarian cancer.
This article originally appeared in the May 2020 issue of Prevention.
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