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Misdiagnosed: What to Know About this Epidemic

Misdiagnosed: What to Know About this Epidemic

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Every year, millions of people get misdiagnosed—given the wrong diagnosis, or just as bad, told nothing is wrong at all.

Misdiagnosis is a huge problem.

Sasha Ottey’s story is one of millions…

She had been losing hair since she was a young teenager. She also struggled with what felt like uncontrollable weight gain, and her periods had always been irregular.

PCOS Hair Loss

Sasha's doctors told her to stop using hair relaxers and lose weight. So the young woman started dieting and over-exercising, eating far fewer calories than she needed.

Although her periods had always been irregular, she’d been on birth control since she was a teen, so she never noticed any other obvious problems. It wasn’t until she went off birth control and her period suddenly stopped that her gynecologist diagnosed her with polycystic ovary syndrome (PCOS)—the source of her weight gain, hair loss, and period problems. She later found out she had insulin resistance, another symptom of PCOS that her insurance wouldn’t even cover diagnostic testing for. 

It took until her late 20s to get a correct diagnosis. But even after her diagnosis, doctors simply prescribed more contraceptives and kept telling her to lose weight, despite her history of disordered eating. 

PCOS Misdiagnosis

So she started her own organization to research and share treatment methods for women with PCOS. Sasha Ottey, the founder of PCOS Challenge: The National Polycystic Ovary Syndrome Association, is not alone.

Only 12% of patients are correctly diagnosed at first.

Researchers estimate that every year, 12 million adults are misdiagnosed in the U.S. alone—about 1 out of every 20 adult patients. 

Another study found that only 12% of patients were initially given a correct diagnosis by their primary care physicians. At follow-up visits with specialists, 20% had been completely misdiagnosed, and 66% required diagnostic changes. That’s a staggeringly high rate of misdiagnosis—and it’s especially troubling because we’re taught to trust our primary care doctors, and it can be difficult and time-consuming to get insurance to even cover a second opinion. 

Ottey’s experience is par for the norm. She was diagnosed after a decade of symptoms. In a study of PCOS patients in Japan, it took an average of 13 years after irregular menstruation or amenorrhea had started to get a diagnosis. Misdiagnosis and delayed diagnosis skyrockets in female populations, even with relatively common medical problems such as PCOS and endometriosis. 

PCOS Misdiagnosis

Why does misdiagnosis happen? Which illnesses are commonly misdiagnosed in women? Learn how you can speak up for yourself and get the diagnosis and treatment you need.

Exploring the root causes of misdiagnosis.

It shouldn’t take years to correctly determine the cause for a patients’ health issues. So why is that commonly the case? There are a few big reasons misdiagnosis is so prevalent in the U.S. (and in other regions, too), and all of these are tied to medical culture and training.

Unisex Medicine and PCOS

  1. Unisex medical training. Only 34% of medical students feel their curriculum has adequately prepared them to manage sex and gender differences, and some medical curriculums don’t even cover sex and gender medicine meaningfully. Despite years of progress, medical training is still geared toward the male body.
  2. Gender-specific symptoms. Likewise, medical students are often taught the common symptoms that appear in male patients, even if those symptoms tend to be different in female patients. For example, chest pain is the most common sign of a heart attack in men. But in women, the symptoms are often much subtler—jaw and arm pain, shortness of breath, nausea—and doctors and women alike tend to discount these symptoms. 
  3. Lack of research. The vast majority of medical studies are done on male animals and men—even for diseases that primarily affect women. Progress is happening here, but it’s slow. One example: Heart disease is the No. 1 killer of American women, and its symptoms, risk factors, and outcomes vary significantly between men and women. But only ⅓ of clinical trials include female subjects, and only ⅓ of those report results by sex. 
  4. Plain old gender bias. Ever been told it’s “all in your head”? Both male and female doctors alike can fall prey to unconscious gender bias, which leads them to discount women’s claims of pain and medical requests.

4 frequently misdiagnosed illnesses.

While misdiagnosis is common in the U.S. medical field, especially for female patients, some conditions are misdiagnosed much more frequently than others. The common denominator? All of these conditions have a wide array of possible symptoms, and symptoms differ in men and women—or don’t appear in men at all because the conditions are related to reproductive health. Keep an eye out for these 4 most frequently misdiagnosed illnesses:

PCOS Nausea and Pain

  1. Endometriosis is when endometrial tissue, which normally grows inside the uterus, starts growing outside the uterus, resulting in painful scar tissue and adhesions. This condition is often downplayed as simply painful periods or PMS symptoms. It also shares symptoms with other conditions, including IBS and PCOS—another frequently misdiagnosed reproductive health issue. Symptoms include painful bowel movements and intercourse, heavy periods, lower back pain, and infertility, and generally get worse over time.
  2. Heart disease. Women may experience no symptoms of heart disease at all. When they do, symptoms often don’t include the classic chest pain and pressure. Instead, they may include back pain, neck pain, fatigue, nausea, and abdominal discomfort. And women typically seek treatment later than men do. 
  3. ADHD. Healthcare professionals are primed to believe men and boys are more likely to have ADHD, leading them to ignore similar symptoms in girls and women. The primary symptoms of ADHD in women are also frequently different from those in men: inattentiveness, as opposed to hyperactivity and impulsiveness. Studies indicate the majority of women with ADHD may never receive a diagnosis, even if co-morbid mental health issues are correctly diagnosed. 
  4. Lyme disease. This illness is commonly misdiagnosed in both men and women because of the non-specificity of its symptoms, and because there are currently no lab tests that can detect Lyme disease with a high degree of accuracy. False positives and false negatives are frequent. It’s often called the “great imitator” because it mimics many other chronic and autoimmune illnesses, including chronic fatigue syndrome, arthritis, fibromyalgia, multiple sclerosis, and even depression.

Stand up against misdiagnosis with these tips.

While misdiagnosis runs rampant in the medical field, there are things you can do to get the diagnosis and care you need. Keep these tips in mind when managing illnesses and seeking medical help.

What to do if you think you have PCOS

  1. Keep a log of symptoms. This can help narrow down what exactly is wrong, and will help you describe your condition accurately and in detail to your care provider.
  2. Get a second opinion. As the study we referenced in the beginning noted, only 12% of initial primary care diagnoses are completely accurate. Consider seeing a specialist or seeking out a different doctor, especially if your initial diagnosis doesn’t sound quite right or treatment is not effective. 
  3. Trust your body. Your pain is real and valid. Don’t discount or minimize your symptoms. You are the most qualified to know when something is wrong, so take your body’s messages seriously and be persistent in seeking help when you don’t know the answers to your medical problems.
  4. Come prepared, and ask questions. Prepare for doctor’s visits by narrowing down a list of your top 3 concerns and bringing questions and documentation of your symptoms, if you have it.
  5. Don’t give up until you feel better. If you’ve dealt with sub-par medical advice and feel as though your back is against a wall, don’t quit. Your health is your responsibility and it is 1000% worth it to keep seeking the best care and doctors for your needs. Maintain that your health is a priority and keep researching, talking to others, and searching for the right health team for your needs.

You are your own best advocate. Take your health seriously, and don’t let anyone downplay the seriousness of your concerns. Stand up for yourself. Seek the treatment you deserve.