Understanding Polycystic Ovary Syndrome (PCOS)

 

Polycystic ovary syndrome is a hormonal disorder that affects women of reproductive age. It is characterized by irregular menstrual periods, excess male hormones, and/or ovarian cysts.

PRIMARY SYMPTOMS

Until we’re postmenopausal, most women get their period every twenty-eight days or so, and it typically lasts anywhere from four to seven days. But women with polycystic ovary syndrome (PCOS)—a common hormonal problem that affects up to one in ten women—may skip their period or experience longer periods. Other symptoms of PCOS include acne, excess hair growth (hirsutism), weight gain, pelvic pain, irregular periods, depression, ovarian cysts, and infertility (Bozdag, Mumusoglu, Zengin, Karabulut, & Yildiz, 2016). Given the symptoms and how common PCOS is among women, it is fairly under-studied. But there is a meaningful collection of research on lifestyle changes, medications, treatments, clinical trials, and other interesting studies that can help us navigate PCOS.

How Many Women Have PCOS?

Polycystic ovary syndrome (PCOS) affects one in ten women, but many aren’t aware that they are affected by it.

HORMONE IMBALANCE AND OVARIAN CYSTS AND FOLLICLES

Women have two ovaries with two crucial reproductive jobs. Our ovaries release eggs during our menstrual cycle and they also produce three major hormones—estrogen, progesterone, and testosterone—as well as a few other hormones, like inhibin and relaxin. The “female” hormones estrogen and progesterone are necessary for the menstrual cycle. The “male” androgen hormones, like testosterone, are also needed at low levels in women, although the reasons why are not entirely clear. One theory is that testosterone is related to female sexual desire and lubrication (Davis & Wahlin-Jacobsen, 2015). Women with PCOS often have higher than normal levels of testosterone and low levels of estrogen, creating a hormone imbalance that interferes with ovulation and can manifest as ovarian cysts (Housman & Reynolds, 2014).

Ovarian cysts are very common. They’re typically small, unnoticeable fluid-filled sacs that don’t cause problems; many of us have had or will have one in our lifetime, usually without knowing it. Cysts become an issue if they grow to be large and painful or if multiple cysts grow on the outer edge of the ovaries, as is often the case in PCOS. It’s also possible for women to have ovarian cysts due to other conditions, such as endometriosis. But what distinguishes PCOS from other conditions is the hormonal imbalance. Another technicality is that women with PCOS actually have ovarian follicles, not ovarian cysts. Which means: Follicles and cysts look exactly the same on ultrasound, and while the names are used interchangeably, follicles contain an immature egg, but cysts do not. Since women with PCOS have trouble releasing an egg each month due to hormone imbalances, these follicles tend to build up on the ovary over time. This is sometimes described as looking like a “string of pearls” on the ultrasound (Housman & Reynolds, 2014).

Potential Causes and Related Health Concerns

The exact cause of PCOS is not known. It runs in families, so it is likely caused by a combination of genetics and environmental factors. One factor that has been heavily researched is insulin resistance.

INSULIN RESISTANCE, WEIGHT, AND DIABETES

Women with PCOS have a high prevalence of insulin resistance, regardless of their weight. They also have a higher risk for other diseases, such as diabetes and cardiovascular problems, especially if they are overweight (Bil et al., 2016; Jeanes & Reeves, 2017).

How Does Insulin Work?

Insulin helps our body regulate the amount of sugar in our blood. In the case of insulin resistance, the body’s cells don’t respond to insulin very well, which causes your blood sugar level to rise. And your body compensates by making more and more insulin.

This can eventually progress to diabetes. Scientists aren’t sure whether PCOS causes insulin resistance or insulin resistance causes PCOS (more on this later in our research section).What we do know is that insulin resistance can cause issues such as type 2 diabetes, metabolic syndrome, and cardiovascular disease if not managed properly. It’s also been linked to increased cancer risk (Orgel & Mittelman, 2013).

The risk of type 2 diabetes may be up to four times greater and diagnosed an average of four years earlier among women with PCOS compared to other women (Rubin, Glintborg, Nybo, Abrahamsen, & Andersen, 2017). In addition, women with PCOS are more likely to be obese, with one meta-analysis estimating the risk of obesity is almost three times higher among women with PCOS (Lim, Davies, Norman, & Moran, 2012). The weight gain with PCOS can be stubborn due to the underlying hormonal issues. Insulin resistance and diabetes are huge risk factors for heart disease if not properly managed.

For women with PCOS, figuring out how to balance insulin levels through lifestyle changes is incredibly important for managing PCOS symptoms and for preventing potentially more serious issues down the road.

FERTILITY AND PCOS

In addition to irregular periods and ovulation issues, infertility is relatively common in women with PCOS, which can be heartbreaking for those who want to become pregnant. There are many medications and technologies available today (and more likely coming) for women who struggle with fertility issues. Losing weight, if you’re overweight, can be a first step to help with ovulation and fertility (Morgante, Massaro, Di Sabatino, Cappelli, & De Leo, 2018). Fertility medications such as clomiphene citrate (aka Clomid) increase hormones to support ovulation. They can be taken alone or in combination with metformin (ASRM, 2017; Morley, Tang, Yasmin, Norman, & Balen, 2017); read more under the conventional treatments section. Other, more aggressive treatment options you may want to discuss with your doctor include assisted techniques such as in vitro fertilization (IVF), bariatric surgery for weight loss, or laparoscopic ovarian surgery (Balen et al., 2016; Butterworth, Deguara, & Borg, 2016). If you have been diagnosed with PCOS and plan to become pregnant, discuss fertility screening and treatment options with your doctor.

MENTAL HEALTH AND PCOS

Many women with PCOS struggle with mood disorders, such as depression and anxiety, which are likely connected to PCOS-related hormonal issues. If you’re struggling: You’re not alone. And there are treatment options that can help. If you are in crisis, please contact the National Suicide Prevention Lifeline by calling 800.273.TALK (8255) or the Crisis Text Line by texting HOME to 741741 in the United States.

In numerous studies, exercise has been shown to improve quality of life among women with PCOS. In one study, an eight-week mindfulness stress-management program was shown to reduce stress, anxiety, and depression among women with PCOS (Stefanaki et al., 2015). There is currently a clinical trial recruiting for depression treatment among women with PCOS; for more information, see our clinical trials section below. Learn more about how to get help with mental illness here.

CANCER SCREENINGS

A large Swedish study of 4 million women looked at cancer risk among those who were diagnosed with PCOS. These women had significant risk for cancer of the pancreas, kidneys, endocrine glands, endometrium, ovaries, skeletal system, and blood. More specifically, the researchers found that this cancer risk was higher across the board among premenopausal women (Yin, Falconer, Yin, Xu, & Ye, 2018). A leading scientific theory is that increased insulin, blood sugar, and inflammation contribute to cancer initiation and progression (Orgel & Mittelman, 2013). Thus, it’s recommended that women with PCOS routinely screen for cancer while working to normalize their blood sugar, insulin levels, and weight to reduce risk factors.

How PCOS Is Diagnosed

There’s not a single test to identify PCOS, which can make diagnosis difficult and sometimes confusing, even for doctors. Women with PCOS are often left out of the medical narrative and can be overlooked or diagnosed with other, more commonly researched diseases. One study of women in Australia showed that almost 70 percent of the women who had PCOS had not been previously diagnosed before the study (March et al., 2010). While there has been debate over the most clinically relevant criteria for PCOS diagnosis, the Rotterdam Criteria (Goodman et al., 2015) is the most widely recognized by doctors and researchers.

The Rotterdam Criteria

According to the Rotterdam Criteria, diagnosing PCOS relies upon the presence of two out of three key symptoms: irregular periods (or no period at all), high levels of testosterone, and/or polycystic ovaries (Rotterdam, 2004). So you don’t necessarily need to have polycystic ovaries to be diagnosed with PCOS, which makes the name a misnomer.

Doctors may order blood tests to determine your hormone levels in addition to an ultrasound or a pelvic exam. Testing for free testosterone is essential for the diagnosis, while progesterone and anti-Müllerian hormone levels can also be helpful. Physicians will want to rule out other conditions, especially among younger women, as irregular periods and acne may just be a normal part of puberty. Early diagnosis of PCOS is key for normalizing menstrual cycles and protecting against related risks, such as infertility, diabetes, and cardiovascular disorders. Women should create a plan with their doctors to address individual needs, depending on factors such as weight and whether they plan to have children. Endocrinologists (hormone experts), particularly reproductive endocrinologists, and ob-gyns are the specialists who are best qualified to advise on the specifics and tailor a treatment plan to your hormonal needs.

Dietary Changes

Simple lifestyle changes—healthy diet and exercise—can assist with weight loss, PCOS symptoms, and fertility, while also working to reduce risk of other diseases in the long term, such as type 2 diabetes and heart disease.

Weight loss is often the first line of defense. If you are overweight, losing as little as 5 percent of your weight can improve metabolic and reproductive abnormalities as well as risk for other long-term issues (Stamets et al., 2004). Numerous studies have shown that lifestyle modifications (exercise and diet changes) are effective at improving insulin resistance, hormone levels, and weight loss in women with PCOS (Haqq, McFarlane, Dieberg, & Smart, 2014; Moran, Hutchison, Norman, & Teede, 2011). Other studies have shown that lifestyle changes in combination with medications are more effective than medications alone (Legro et al., 2015; Naderpoor et al., 2015).

There has not been a general consensus on the best diet for women with PCOS. Most studies base their recommendations on diets for individuals with type 2 diabetes. Good results have been shown for diets that are low-carb, low-GI, and high-fiber, but more large-scale research is needed.

LOW-CARB, LOW-GI DIETS

Foods containing carbohydrates can be defined by their glycemic index (GI), which is a measure of how quickly they raise the sugar (glucose) level of the blood. High-glycemic diets have been shown to be associated with both PCOS and obesity (Eslamian, Baghestani, Eghtesad, & Hekmatdoost, 2017; Graff, Mário, Alves, & Spritzer, 2013). On the other hand, several studies have shown that low-carb and low-GI diets can decrease insulin levels and improve insulin sensitivity in women with PCOS (Barr, Reeves, Sharp, & Jeanes, 2013; Berrino et al., 2001; Douglas et al., 2006; Marsh, Steinbeck, Atkinson, Petocz, & Brand-Miller, 2010).

Picking carbs that have a low GI, such as vegetables, whole grains, and legumes, can reduce your blood sugar spike after a meal and can reduce insulin resistance (Brand-Miller, Hayne, Petocz, & Colagiuri, 2003). Studies have also found that low-carb diets can help with weight loss in women with PCOS (Berrino et al., 2001; Goss et al., 2014; Marsh et al., 2010). They also may be able to help with menstrual regularity, although more research is needed (Marsh et al., 2010). One thing to keep in mind: Low-carb is different from a ketogenic diet, which is low-carb and high-fat (more on dietary fats and PCOS below).

HIGH-FIBER DIETS

High-fiber diets may be beneficial. While fiber is molecularly a carbohydrate, it is unlike other carbohydrates in that it does not get digested as it passes down your digestive tract and therefore does not affect your blood sugar levels in the same way that other carbs do. Foods that contain a lot of fiber have a low GI. Diets high in fiber have been shown to help overweight individuals with a high risk of type 2 diabetes lose weight. Furthermore, research has shown an association between low-fiber diets and PCOS (Eslamian et al., 2017).

There hasn’t been much research assessing high fiber diets for women with PCOS, but one study found that women with PCOS who reported eating more fiber showed less insulin resistance and had less total body fat (Cunha, Ribeiro, Silva, Rosa-e-Silva, & De-Souza, 2018). Another study showed that high fiber and low trans-fatty acid intake were associated with metabolic improvements among overweight women with PCOS (Nybacka, Hellström, & Hirschberg, 2017). ). And a third, more recent study found published in 2019 found that lower testosterone levels were associated with increased fiber intake among women with PCOS (Barrea et al., 2019). Overall, high-fiber diets seem promising for PCOS, but more research is needed.

Which Fats to Eat

Some diets targeted at weight loss will suggest that you lower your fat intake, but whether this is effective really depends on what kind of fat we’re talking about. You’ve probably heard of “good” fats, like monosaturated fat and polyunsaturated fat, and “bad” fats, like saturated fat and trans fat. Saturated fat increases blood cholesterol and has been shown to be associated with metabolic syndrome, so women with PCOS who have insulin sensitivity should lower their saturated fat intake by cutting out high-fat dairy (butter, pastries, ice cream) and fatty meats (marbled steak, lamb) (Riccardi, Giacco, & Rivellese, 2004). The US Food and Drug Administration has taken steps to reduce the amount of trans fat in processed foods, but avoiding processed foods is still generally a good idea. If you’re cutting out carbs like high-GI foods, sugars, and white flour, try substituting with healthy fats, like oils and nuts, in addition to protein, vegetables, whole grains, and legumes.

THE DASH DIET

The Dietary Approaches to Stop Hypertension diet, aka the DASH diet, has been shown to be helpful for weight loss as well as for reducing insulin and androgen levels in women with PCOS. It consists of low-GI, high-fiber, and low-calorie meals rich in fruits, vegetables, whole grains, and low-fat dairy. It was originally designed for individuals with high blood pressure, but a couple of randomized controlled trials have demonstrated benefits for overweight women with PCOS.

The first study, in 2014, showed that overweight women with PCOS who followed the DASH diet for eight weeks lost weight and had significantly lower insulin (Asemi et al., 2014). A second study of overweight women with PCOS showed that eating the DASH diet for twelve weeks improved weight loss while reducing BMI, fat mass, and androgen levels (Azadi‐Yazdi, Karimi‐Zarchi, Salehi‐Abargouei, Fallahzadeh, & Nadjarzadeh, 2017). You can find a sample menu of the DASH diet online.

The Research on Dairy

So what about dairy? The DASH diet emphasizes low-fat dairy, but another study suggests that eating less dairy could be beneficial. Eating a diet low in dairy for eight weeks was shown to reduce weight, insulin resistance, and testosterone levels among women with PCOS (Phy et al., 2015). This diet included lean animal protein, fish and shellfish, eggs, nonstarchy vegetables, low-sugar fruits, nuts and seeds, oils (coconut and olive), and a small amount of red wine and full-fat cheese per day. (Yes, just a little bit was allowed so people would actually stick to the diet.) The diet excluded grains, beans, other dairy products, and sugar.

Nutrients and( Supplements for PCOS )

Women with PCOS may benefit from supplementing with vitamin D and omega-3s. But other nutrients may have adverse health effects.

VITAMIN D

Some women with PCOS are deficient in vitamin D, and women with PCOS who are overweight are even more severely deficient (Hahn et al., 2006; Yildizhan et al., 2009). Vitamin D deficiency may also exacerbate symptoms of PCOS such as excess hair growth (hirsutism) and insulin resistance, as well as increase risk for cardiovascular problems and miscarriage, which may be of special concern for women with PCOS due to coexisting reproductive issues (Hahn et al., 2006; McCormack et al., 2018; Thomson, Spedding, & Buckley, 2012). A 2020 meta-analysis of eleven studies found that vitamin D supplementation among women with PCOS was associated with significantly decreased testosterone levels, insulin resistance, and cholesterol levels, but did not have a significant effect on BMI (Miao et al., 2020). The studies included in this meta-analysis each used differing doses for vitamin D for different periods of time, so future well-controlled studies are needed to determine what dose of vitamin D is beneficial for women with PCOS. Another study published in 2020, after this meta-analysis, found that 10,000 IU of vitamin D twice weekly combined with clomiphene citrate and calcium may improve ovulation among women with PCOS (see here for more on fertility and PCOS) (Rasheedy et al., 2020). You can get only a small amount of vitamin D from your diet, so sunshine and supplementation are often important.