For how common it is, there are an awful lot of misconceptions about polycystic ovary syndrome (PCOS). And while that can be frustrating for people who have the condition, it can also get in the way of their care.
PCOS statistics vary a bit because it can be complicated to diagnose, but according to the Office on Women's Health, up to 10 percent of people with ovaries have the condition during their reproductive years.
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"PCOS is a hormone imbalance where your ovaries produce excess hormones called androgens," explains Amy Wetter, MD, ob-gyn at Pediatrix Medical Group in Atlanta, Georgia. "Due to this hormone imbalance, women will often have missed periods, irregular cycles, unpredictable ovulation and can also have acne, excess hair, obesity, thin hair, cysts on the ovaries and infertility."
Although there is a lot we know about PCOS, there's also a lot we don't know, including what causes it. "The exact cause of PCOS is not clear at this time, but genome-wide studies have identified some genes that may play a role in its development and predispose one to the disease," says Elizabeth Dilday, MD, an ob-gyn with CCRM Fertility in Orange County, California.
There's a lot of confusion out there about PCOS, which can leave people with the condition unsure about how to manage their symptoms. Here, ob-gyns and endocrinologists help us unpack the most common myths about PCOS and explain the truth about living with this diagnosis.
Myth 1: All People With PCOS Have Ovarian Cysts
Maybe the most common myth about PCOS is that everyone with the condition has ovarian cysts. This idea has probably sprung up because of the condition's name (polycystic ovary syndrome), says Stephanie Smeltzer, MD, reproductive endocrinologist at Atlantic Center for Reproductive Medicine. But it's actually not true.
In fact, there are a host of criteria used to diagnose the condition, Dr. Smeltzer says, and cysts are just one possibility.
And just because someone has cysts on their ovaries, it doesn't automatically mean they have PCOS. In fact, according to a 2014 paper in Clinical Epidemiology, about 20 to 30 percent of people with ovaries who don't meet the medical criteria for PCOS have multiple ovarian cysts.
Myth 2: PCOS Is Caused By Unhealthy Lifestyle Choices
Many people think PCOS is caused by unhealthy lifestyle choices, like overeating or lack of exercise.
But Pamela Berens, MD, ob-gyn and professor with UTHealth Houston, says this is a misunderstanding: "PCOS is an endocrine and metabolic disorder," she explains, adding that there may also be a genetic predisposition for the disease.
In other words, while we don't totally understand what causes PCOS, "the disease does not appear to be caused by lifestyle choices," Dr. Berens emphasizes.
Myth 3: Only People With Overweight or Obesity Have PCOS
"One of the most common myths is that women with PCOS have to be overweight or obese to have a diagnosis or even do a workup for PCOS," says Dr. Wetter.
On the contrary, September 2019 research in Clinical Medical Insights: Reproductive Health found that between 38 and 88 percent of people with PCOS meet the criteria for overweight or obesity. So while this might be the majority, it's certainly not everyone.
Part of the reason why this myth exists is that many people think obesity causes PCOS. But this isn't true.
"It is important to understand that the underlying mechanism is ovarian hormone dysfunction, which can be present in [both] normal and overweight/obese women," Dr. Wetter explains.
Myth 4: People With PCOS Always Have Excessive Hair Growth
While it's true that excessive hair growth can be a sign of PCOS for some, it's a myth that all people with PCOS have this symptom, Dr. Wetter says.
Hirsutism, or male-pattern hair growth — which causes hair growth on the face, back and chest — can be a sign of PCOS, but it can also be a symptom of a different endocrine disorder or simply a product of someone's ethnicity, Dr. Wetter notes.
Myth 5: People With PCOS Can’t Get Pregnant
One huge myth about PCOS is that if you have it, you can't get pregnant. While it's true that lack of ovulation is a sign of PCOS and often part of how it's diagnosed, it doesn't mean you can't ovulate when you have the disorder.
"For women with PCOS who do experience infertility, there are many good treatments for improving ovulation and fertility that are available," Dr. Berens assures.
Myth 6: It’s Impossible to Lose Weight When You Have PCOS
"In reality, while weight management can be more challenging for some with PCOS due to insulin resistance and hormonal imbalances, it's not insurmountable," she says.
Simple lifestyle changes, like reducing calories and exercise, can help. At times, medical treatment for weight loss can be helpful as well, Dr. Bone says.
And again, a little goes a long way. Studies — including December 2017 research in Women's Health — have found that even a weight reduction of 5 to 10 percent can help with metabolic issues related to PCOS and increase your chances of ovulation.
Myth 7: PCOS Is Only a Reproductive Disorder
We usually think of PCOS solely as a reproductive disorder that makes pregnancy challenging. "This is a myth," says Dr. Dilday. "While PCOS is classified as a reproductive endocrine disorder, it may affect many systems in your body outside of the reproductive system."
For example, PCOS can cause skin issues, like acne and unwanted hair growth, she says.
People with PCOS also have an increased risk of conditions like insulin resistance, cardiovascular disease, metabolic syndrome, elevated cholesterol and type 2 diabetes, Dr. Dilday notes.
All of this is why it's so important to take your condition seriously, keep up with your health care appointments and take steps to manage the condition.
Myth 8: You Don’t Need Birth Control if You Have PCOS
Many people link PCOS with infertility, and if they are experiencing irregular menstrual cycles as well, they may not think they need birth control. But it's not true that people with PCOS don't ovulate or get pregnant, so if pregnancy is not an option for you right now, you should use birth control, Dr. Dilday says.
"It is important for patients with PCOS to use a reliable form of contraception, as ovulation may still be occurring, albeit less frequently and less predictably," she says.
Myth 9: You Should Try to Conceive for at Least One Year Before Seeing a Specialist
Some people with PCOS take a "wait and see" approach when it comes to getting pregnant. But Dr. Smeltzer doesn't recommend this, especially if you know you aren't ovulating.
"Another myth is that you should try to conceive for at least one year before seeing a fertility specialist if you have PCOS," says Dr. Smeltzer. "It is not possible to get pregnant without ovulating, so if you know you are not ovulating, the earlier you see a fertility specialist, the earlier we can help you get pregnant."
Myth 10: PCOS Goes Away During Menopause
If you have PCOS, you might think you'll not have to worry about the condition anymore once you hit menopause (defined as not having a period for at least 12 months, and usually affecting people between ages 45 and 55). But this isn't completely accurate, Dr. Bone says.
"It is true that ovulatory irregularities go away after menopause," she says. "However, metabolic conditions such as insulin resistance will persist."
PCOS is actually a lifelong condition, Dr. Bone says, though it manifests in different ways at different times in life.
Likewise, having the condition puts you at higher risk of conditions like heart disease, diabetes and stroke, and that risk also increases with age.
This is why it's important to keep in touch with your health care team, take any recommended medications and keep eating well and exercising, even after the menopause transition.
PCOS is a complex condition that can affect many body systems and have significant effects on health and wellbeing.
Still, it is possible to manage PCOS symptoms, and better understanding the condition can help people get the diagnosis and care they need to live full, healthy lives.
- Clinical Medicine Insights: Reproductive Health: Obesity and Polycystic Ovary Syndrome: Implications for Pathogenesis and Novel Management Strategies
- Endocrine Society: Hirsutism
- National Institute on Aging: What Is Menopause?
- National Institutes of Health. Treatments for Infertility Resulting from PCOS
- National Library of Medicine: Polycystic Ovarian Disease
- Nature Reviews Endocrinology: Polycystic ovary syndrome: definition, aetiology, diagnosis and treatment
- Office on Women’s Health: Polycystic ovary syndrome
- Women’s Health: Pregnancy-related outcomes for women with polycystic ovary syndrome
- Clinical Epidemiology: "Epidemiology, diagnosis, and management of polycystic ovary syndrome"
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