Polycystic Ovarian Syndrome Affects Millions of Women — But What Is It?
Despite being extremely common, PCOS is still one of the most under-diagnosed diseases in the U.S.
If you’ve ever struggled with a super irregular period (or no period at all), hair growth in unfavorable areas, trouble losing weight, or mood disorders like depression or anxiety, it’s time to make an appointment with your doc. These are all indicators of PCOS, a chronic condition that affects millions of people with ovaries, and can lead to a slew of health complications if left unchecked.
Ahead, everything you need to know about PCOS, including what causes it, how it's diagnosed, and your treatment options.
OK, So What Is Polycystic Ovarian Syndrome?
So you’ve heard the term PCO or PCOS, meaning Polycystic Ovarian Syndrome (sometimes called Polycystic Ovary Syndrome) — but what is it? By definition, it’s a chronic hormonal disorder.
Due to the imbalance of hormones (particularly an excess of androgens, which includes testosterone, as well as a resistance to insulin), the ovaries in an affected person become enlarged and develop multiple cysts (hence, the poly-cyst part of this ordeal). As you probably know, the ovaries make an egg that’s released monthly when all things are running smoothly down there — but with PCOS, the egg doesn’t necessarily develop properly, and many times it’s not released. The immature follicles (underdeveloped eggs) build up. This can lead to 12 or more egg follicles or "cysts" on one ovary that “look similar to a string of pearls,” according to Allen Morgan, M.D., an ob-gyn and reproductive endocrinologist.
And despite it affecting an estimated 6 to 12% of women of reproductive age (seriously, a lot of people here — as many as 5 million in the U.S., according to the CDC), PCOS is still one of the most under-diagnosed diseases in the U.S., Dr. Morgan says. “Surprisingly, most women with PCOS don't even know they have it. Estimates say that less than 25% of women with PCOS have actually been diagnosed,” he adds.
What Causes PCOS?
Because it’s a highly-searched query, let’s clear this up real quick: PCOS is not sexually transmitted. And while there is yet to be an exact confirmed cause for this chronic condition, doctors and researchers believe it's "due to a combination of genetics and environmental factors," says Zaher Merhi, M.D., a fertility expert and Director of IVF Research at New Hope Fertility Center, adding that "there is no specific gene discovered yet that is responsible for PCOS."
You can potentially even develop it as a fetus, adds Catharine Marshall, M.D., ob-gyn and gynecologic surgeon in La Jolla, CA. “Recently scientists are linking developing polycystic ovary syndrome with elevated levels of anti-Mullerian hormone while in your mother's womb — we call that epigenetics, the womb environment factor.”
There's also the fact that excess insulin and insulin resistance runs in families, which would lead to excess androgens (‘male’ hormones). Insulin resistance (a key factor in type 2 diabetes) can lead to high blood pressure, increased appetite, weight gain, and difficulty losing weight; excess androgen can lead to ‘male’ characteristics in a female body, while also contributing to ovarian cysts and even tumors, and in theory, a longer window of time to conceive (delayed ovulation may improve odds of fertility later in life… more on that later).
Still, in one study, only about 24% to 32% of patients had mothers with PCOS, which is why doctors believe that environment and lifestyle are a big piece of the puzzle.
"Weight gain after an injury or sedentary lifestyle change can factor into developing PCOS,” Dr. Marshall explains. Diet can also be a factor. “PCOS can be brought on by weight gain and excess intake of sugar and gluten,” Dr. Morgan said. The CDC confirmed this, noting that “Lifestyle can have a big impact on insulin resistance, especially if a woman is overweight because of an unhealthy diet and lack of physical activity."
And, if the underlying cause is related to insulin and cortisol secretion, external stressors could exacerbate PCOS, Dr. Marshall says. “Stress and lack of healthy sleep can be triggers — Welcome to 2020!” In other words, PCOS can very much be intensified by the current global pandemic.
So how do you know if you might have PCOS, and it’s time to see a doctor for an official diagnosis? There are physical and psychological symptoms of PCOS, but the chief indicator would be an irregular period.
“If you have menstrual cycles that are 35 days or longer, PCOS is at the top of my list,” Dr. Marshall says. This is true for 85% of PCO-diagnosed women. Irregular periods and infrequent periods, which Dr. Marshall characterizes as nine or fewer spontaneous cycles a year are also extremely common.
Acne and excess facial and body hair — in places where women don’t typically see growth, such as the jawline, chin, upper lip, chest, lower abdomen, inner thighs, and back — are present in 80 to 90% of affected women, according to both Dr. Marshall and Dr. Morgan. The doctors also note that male-pattern hair loss can be a potential symptom.
Weight gain and not being able to lose weight easily are also extremely common in women with PCOS, Dr. Marshall adds. Important note: For roughly 20 percent of women, weight/insulin resistance isn’t an issue — which can lead them to chalk their other symptoms up to something else. This is why some docs like Dr. Merhi use the term ‘lean PCOS’, an unofficial diagnosis “which means they do not gain weight, but they have all the other symptoms of PCOS.”
According to Dr. Merhi, you may also experience “PCOS pain” which is the soreness, tenderness, and abdominal or pelvic pain.
Something important to keep in mind: “This condition expresses itself very differently for different people,” Dr. Marshall says. “The most common patient that I see with PCO comes in having irregular cycles and acne or hair growth. Some patients come in for pelvic pain, then they have a pelvic ultrasound showing polycystic, enlarged ovaries. Even though they weren’t complaining about androgen excess at that time, that workup unravels why they needed strong acne medications and birth control pills at a young age.”
Beyond the above symptoms, there are some serious conditions that patients with PCOS may experience and should be on the lookout for, Dr. Zahra notes. In addition to depression, “women with PCOS are predisposed to [type 2] diabetes, endometrial cancer, and sleep apnea.”
Dr. Marshall adds that 80% of women with PCOS are at risk for metabolic syndrome — a cluster of conditions that increase the risk of heart disease, stroke, and [type 2] diabetes. For this reason, your doctor will likely screen you with diabetes tests, while also looking for physical skin changes associated with high insulin and diabetes. (Dr. Merhi adds that Hispanic women, in particular, are particularly at risk for more severe health complications from PCOS, including diabetes.)
“The elevated androgens over many years cause [increased risk] for heart and vascular disease,” adds Dr. Morgan. “Men die from these more than women, but elevated androgens put women with PCOS at risk.”
How PCOS Is Diagnosed
Getting a PCOS diagnosis is as simple as scheduling a visit with your OB/GYN or primary care physician.
“PCO is a syndrome with somewhat ‘squishy’ diagnostic criteria,” Dr. Marshall says. “You only need two out of three criteria: not ovulating regularly; testosterone excess; enlarged ovaries with unreleased eggs.” This is called the Rotterdam criteria, Dr. Merhi tells us.
How does a doctor determine this? Sometimes your symptoms give it away. “The testosterone excess can be obvious ‘clinically’ by acne, hair growth, or male pattern hair loss or by lab evaluation,” said Dr. Marshall.
For women suspected to have PCOS based on symptoms, “lab work [looking for elevated testosterone and other hormones] can clinch the diagnosis,” Dr. Marshall says. One such test your doctor may perform is for AMH [anti-müllerian hormone], an indirect test to see how many eggs are contained in the ovary, she explains.
In some cases, for a more definitive conclusion, an intravaginal ultrasound will be performed to examine your ovaries, Dr. Morgan adds.
What’s the Treatment… and Is There a Cure?
The bad news: there’s no cure. But there is hope, and lots of PCOS treatment options.
“The great news: PCO can go into remission,” said Dr. Marshall — especially if you can find the underlying cause and treat it appropriately.
The birth control pill is a little wonder for hormone conditions, isn’t it? “If patients start oral contraceptives early on, they can stop the ugly side effects of PCOS,” said Dr. Morgan. “This is a tool that can help lower the ‘male’ hormones.”
“In addition to lifestyle changes, the symptoms in some women can get better after taking birth control pills,” Dr. Merhi seconds.
Diet and Exercise
It might seem trite, but it’s the golden solution for so many things in life: a healthy diet and exercise. One reason this is important when it comes to PCOS is weight management, which has been highlighted as “first-line treatment” by researchers.
Weight gain can exacerbate PCOS symptoms, Dr. Morgan says, adding that half of patients see a reduction in symptoms through weight loss. The double-edged sword, of course, is that insulin resistance that may be concurrent with PCOS makes it harder to lose weight. This is something your doctor can help you work through.
Experts say PCOS management isn't just about weight alone, but about what your diet consists of. If family genes for diabetes or sensitivity to carbohydrates are the trigger, processed carbs can make PCOS worse, Dr. Marshall says. A diet with more whole foods (and with less sugar and gluten) can play a critical role in symptom management and perhaps remission, she adds. Still, diet isn’t a cure-all and “some women with plant-based diets still suffer from PCOS,” Dr. Marshall says.
Moving away from sugar has led some PCOS patients to trying the keto diet, which is not a concrete cure, but has lots of anecdotal evidence (particularly in PCOS forums) of women overcoming infertility struggles and getting a hold on symptoms.
All docs interviewed also mentioned the medication Metformin. Although originally developed and typically prescribed to treat type 2 diabetes, it can help it can also help women with PCOS dealing with elevated blood sugar levels, Dr. Morgan says. "The wonder drug Metformin can lower insulin levels and steer your body out of the PCO vicious cycle," Dr. Marshall says.
Acupuncture has actually been shown as an effective PCOS treatment in some small studies, both to aid in fertility and manage symptoms. Though not a definitive clinical solution, there’s growing evidence that this may be a powerful treatment.
As for supplements? “Herbal remedies are not a cure, but may help manage the pain and discomfort,” said Dr. Morgan (hence, why he created a CBD-based menstrual supplement company with his daughter, Maxine+Morgan).
Because CBD can help manage the endocannabinoid system (which regulates other systems in the body), it may play a role in managing hormonal imbalances as well. Unfortunately, the ECS has historically not been taught in medical school, so many doctors are unaware of how this system functions.
Though not getting to the root of the issue (addressing hormone balancing and insulin resistance), cosmetic treatment can help manage certain symptoms. Treatments like electrolysis and laser hair removal might mitigate excessive facial and body hair, while treatments from a dermatologist and a custom skincare routine can help to manage acne and oily skin. Talk to your doctor about a plan that directly addresses your symptoms and concerns.
What About Infertility?
“Since it is a hormonal disease that results in irregular or absent periods or ovulation, PCOS is a leading cause of infertility,” Dr. Morgan says. “Most women are never officially diagnosed until they begin struggling with infertility and seek help in getting pregnant.” (On the flip side, it's also true that some women dealing with infertility are incorrectly diagnosed with PCOS, despite not meeting any of the other criteria, Dr. Merhi adds.)
But despite the infertility issues that may present themselves, PCOS pregnancy is a possibility. “Women with PCO usually have higher egg count — this is a silver lining for those of us with PCO features that want to start families later in life,” Dr. Marshall says. “The thought is that these women are releasing fewer of their eggs than average in their teens and twenties. In some ways, they may be self-banking them.”
“The most effective treatment options for women trying to conceive with PCOS is the use of oral medications to trigger ovulation (ovulation induction),” Dr. Morgan says. (Clomiphene citrate and Letrozole are commonly prescribed). For women who are also insulin-resistant, meds like Metformin can again be helpful to control abnormal insulin production and sugar metabolism.
“If you are missing your period, gaining a lot of weight without reason, and experiencing extra hair on your body, you should see a doctor,” said Merhi says. You may have a hormonal imbalance, in the form of a chronic condition called PCOS that can result in some health complications — but you can manage it with oral contraceptives, diet and exercise, weight management, and acupuncture. There’s no cure, but an individualized treatment plan can improve your quality of life and possibly aid in fertility (if that's part of your family planning).