Tara Teschke knew something was wrong even before she went to the doctor. After years of regular menstrual cycles, her periods had become painful and sporadic. Around the same time, she was hoping to lose weight before her upcoming wedding but was having trouble, even after implementing an intense regimen of running 10Ks and weight lifting several times a week.
The first few doctors she saw chalked up her symptoms to a thyroid issue, and urged her to slim down, a response that left her frustrated. “When someone tells you, ‘Just lose weight,’ but you’re really doing everything you can and in pain, you just start to crumble,” says Teschke, a 36-year-old writer and musician from Austin, Texas. “I felt like all they saw was my weight, not my symptoms.”
She kept seeing different doctors, trying in vain to learn what was wrong. Two years later, in 2014, one physician mentioned she might have a hormonal disorder known as polycystic ovary syndrome, or PCOS, but wouldn’t run the tests necessary for a diagnosis because Teschke didn’t have health insurance. It was only a few months ago, six doctors and five years after the initial onset of her symptoms, that she was able to get a diagnosis confirming that doctor’s suspicion.
Bouncing from one health care provider to another is almost a defining feature of the PCOS experience. A 2016 study from the University of Pennsylvania School of Medicine found that nearly 50% of women with PCOS saw three or more health professionals before getting a diagnosis, and for about a third of women, it takes more than two years to receive one.
PCOS is one of the most common endocrine conditions in women between 15 and 44 — it’s estimated that one in 10 women in this age group has it.
The lag time could stem from the fact that PCOS is more a collection of symptoms than a cohesive condition with a known cause. And many of those symptoms, like weight gain, fatigue, irregular periods, increased body hair, and acne, can each be linked to many other health issues. Landing on PCOS requires a physician who’s knowledgeable enough, and enough of a good detective, to piece them all together.
But there’s another unfortunate reality: Doctors and researchers still don’t know a lot about PCOS, and there are even some parts of the syndrome they can’t agree on.That ends up hurting potential research that could be done on PCOS and the women who may receive misinformed care as a result.
PCOS is one of the most common endocrine conditions in women between 15 and 44 — it’s estimated that one in 10 women in this age group has it, which translates to about 5 million women in the U.S. Some experts also think the number of women with PCOS may be growing, primarily due to the fact that the diagnostic criteria expanded in 2003.
“These criteria have been something doctors and researchers have been debating for a while,” says Dr. Margo Hudson, an endocrinologist at Brigham and Women’s Hospital in Boston. In 1935, two American researchers, Michael Leventhal and Irving Stein, first described the condition we know today as PCOS, labeling seven women who had excess body hair, missed periods, and enlarged polycystic ovaries with Stein-Leventhal syndrome. Since then, the defining traits of PCOS have been revised twice. First, in the ’90s, experts decided that a diagnosis meant that women had to have both higher testosterone levels and irregular periods. Then, in 2003, researchers published a set of diagnostic guidelines known as the Rotterdam criteria. According to these new guidelines, which remain the go-to tools for diagnosing women today, patients only had to have two of three symptoms: irregular periods, high testosterone, or poly-follicular ovaries. (Polycystic is actually a misnomer — it’s not cysts that make the ovaries larger, but many small follicles.)
But the Rotterdam criteria caused a rift among experts. Some scientists and doctors still think that high testosterone levels are one of the core traits of PCOS. In 2017, a group of researchers published an editorial in the British Journal of Medicine arguing that the expanded guidelines might even be over-diagnosing women with PCOS, especially younger women and those who have milder symptoms, causing needless angst — especially because PCOS can come with more serious complications, like infertility and increased risk of diabetes and heart disease.
“For the people who come to see me, they worry that they’ll get diabetes, or have a heart attack when they are young, or that they will never get pregnant. That causes a lot of distress and over-diagnosing [which] could cause unnecessary worry,” says Hudson, who was not involved in the editorial.
There’s also debate about how severe symptoms need to be in order to qualify as PCOS. “All the traits of PCOS exist on a spectrum, and they need to get above a certain threshold to be scored as PCOS,” explains David Abbott, PhD, a professor of reproductive sciences at the University of Wisconsin-Madison. “On top of that, the symptoms can shift above and below the diagnostic criteria. For some women, your testosterone can go up and down, [or] the amount of follicles might go up and down, so it makes the diagnosis a bit of a moving target.” It’s common, for example, for teens and younger women to have an increased number of follicles on their ovaries that spontaneously decrease after a few months. A professional who doesn’t specialize in PCOS, however, could see the increase in follicles on an ultrasound and immediately count this toward a PCOS diagnosis, even though that might not be the case.
“I didn’t have irregular periods, either, just this one that was going on for too long. But I was overweight, so my doctor said I must have PCOS.”
And body size is still mistaken as a symptom. While most women with PCOS do have a higher BMI, being overweight or obese isn’t a prerequisite. “I see many women in my practice who have difficulty managing their weight, who are told they have PCOS on the basis of that,” says Dr. Andrea Dunaif, a women’s health researcher and chief of the Hilda and J. Lester Gabrilove Division of Endocrinology, Diabetes, and Bone Disease for the Mount Sinai Health System in New York City. “It becomes a convenient thing to tell women who are struggling with weight loss. There are health professionals out there who just don’t know how to use and interpret the diagnostic criteria.”
Lana Davis, 38, experienced this firsthand when a doctor misdiagnosed her with PCOS 14 years ago. After having a period that lasted for five weeks, she went to her family practitioner, who put her on birth control. “No one did any tests to check my testosterone or ultrasound to look at my ovaries,” says Davis, an elementary school teacher from Goodland, Kansas. “I didn’t have irregular periods, either, just this one that was going on for too long. But I was overweight, so my doctor said I must have PCOS.” Recently, a new doctor did blood work and an ultrasound only to find that Davis did not, in fact, meet the criteria for the condition.
To clear up the ambiguity surrounding PCOS, many experts are striving for consensus and launching ambitious studies to get answers. Last year, a group of scientists published a paper in Clinical Endocrinology that included 166 best practices for evaluating and managing women with PCOS. Part of the reason that women experience so much variation with treatment is that doctors, especially primary care physicians who deal with so many conditions, might not be up-to-date with the newest recommendations and practices, or know how to interpret findings, says Marla Lujan, PhD, an associate professor of human nutrition at Cornell University who served as a collaborator on the paper.
Ultrasound readings are one area where the research has shifted practice. “It used to be that you have to have at least 12 follicles in order to meet the threshold for polycystic ovaries, but as we pored over the research, we found that it should be 20 or more,” Lujan explains.
“Hopefully this huge education push will reduce the number of doctors women will have to see,” Abbott adds, “but it’s still a work in progress.”
At Brigham, Hudson is part of research that aims to parse the related health issues that women with different PCOS characteristics might face, including heart disease, diabetes, infertility, and endometrial cancer. Since not all women display the disease in the same way, she says, it might not be fair to say that they’ll have the same risks. “I think it’s important that we can tell patients what their true risks are for the various problems associated with PCOS,” she says. “Who is really at risk for prediabetes or hypertension when they get older? That’s something we need to find out.”
And as the science moves forward, experts are cautiously optimistic that care will, too. “With all the work doctors and researchers are putting into PCOS,” Hudson says, “we hope that it will lead to women getting more accurate diagnoses and information in the near future.”