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It can be challenging to talk about reproductive and sexual health. That’s part of why most women don’t know they have polycystic ovary syndrome (PCOS) and many only find out they have the condition when they have difficulty getting pregnant. We spoke with Dr. Stacy Henigsman, Allara’s Medical Lead, about PCOS, what causes it, and how it’s diagnosed.
PCOS affects hormonal health, leading to irregular periods, elevated testosterone levels, and cysts in the ovaries. If you have irregular or absent periods, increased facial or body hair growth, unexplained weight gain, or are having trouble getting pregnant, it may be caused by PCOS.
What is polycystic ovary syndrome (PCOS)?
“Polycystic ovary syndrome (PCOS) is the most common hormonal disorder in women of reproductive age,” says Dr. Henigsman. “It affects 7–10% of women of childbearing age and is the most common cause of infertility. In the United States, an estimated 5 to 6 million women have PCOS, but many women go undiagnosed.”
The features of the condition can vary, explains Henigsman, “but commonly include menstrual cycle disturbance, hyperandrogenism (elevated testosterone levels), insulin resistance, and obesity.” Dr. Henigsman explains that the presentation of the condition can be different in different people and that many of the features of the condition can exist on their own unrelated to the disease (like irregular periods or overweight), making it particularly difficult for healthcare providers to reach a diagnosis.
“It’s a heterogeneous and complex disorder that has both adverse reproductive and metabolic implications for affected women,” explains Dr. Henigsman. Still, one of the things that makes it so difficult to diagnose and treat is that the cause of the disorder still isn’t clear. “There is generally poor understanding of its etiology and the exact cause of PCOS remains unknown.”
Scientists and doctors have some clues as to what factors might contribute, says Dr. Henigsman. “There is a genetic component to PCOS, as female relatives or children of patients with PCOS are at an increased risk of developing the condition themselves.”
Those with PCOS may experience irregular periods, increased male hormone levels, and cysts in their ovaries. Despite many women being affected by PCOS, it’s often underdiagnosed. When it remains undiagnosed, people are at an increased risk of developing more severe associated conditions (like diabetes) and complications from those conditions (like heart disease, nerve damage, or kidney damage).
Signs and symptoms of polycystic ovary syndrome
PCOS may develop as early as puberty or it can develop later in life. Adolescents with PCOS may be harder to diagnose since some of the symptoms characteristic of the condition can be dismissed as normal for adolescents, including increased body hair, acne, and irregular periods.
Common signs and symptoms of PCOS include:
- Irregular menstrual periods
- Heavy menstrual bleeding
- Excess hair growth that appears thick and dark, a condition called hirsutism
- Hair loss or thinning of hair on the scalp
- Weight gain and obesity
- Darker patches of skin where skin creases such as around the neck, armpits, groin, under the breasts, etc.
- Ovarian cysts (fluid-filled sacs in or around the ovary)
- Chronic anovulation (more than 35 days between ovulating)
Causes of PCOS
The exact cause of PCOS is unknown. Many times, women will have higher androgen hormone levels, which can impact their fertility and menstrual cycles.
A combination of factors likely causes PCOS. For some of these factors, it’s unclear whether they contribute to the development of PCOS or if they are caused by it.
Risk factors for developing PCOS include:
- Genetics: It’s believed that several genes contribute to PCOS. A family history of this syndrome increases the chance of developing it.
- Inflammation: Excess inflammation is associated with both insulin resistance and elevated androgen hormone levels.
- Weight gain: People with PCOS are more likely to carry excess fat in their abdomen, and trouble maintaining a healthy weight is common. Obesity is associated with higher testosterone levels and insulin resistance.
- Insulin resistance: High insulin levels and insulin resistance, the basic mechanism underlying type 2 diabetes, affect about 65–70% of people with PCOS. It’s believed that high insulin levels are related to excessive levels of androgen hormones.
Effects and complications of PCOS
PCOS is known to increase the risk for several conditions. Potential complications of PCOS include:
- Pregnancy complications
- Metabolic syndrome (a group of conditions that increase your chances of developing heart disease and stroke)
- Endometrial cancer (cancer in the lining of the uterus)
- Depression and anxiety
- Obstructive sleep apnea (OSA)
- Type 2 diabetes
- Liver disease
PCOS and pregnancy
Many women first discover that they have PCOS when seeking help for fertility issues. PCOS affects your menstrual cycle and can lead to anovulatory cycles, or cycles in which no egg is released from the ovaries, reducing the chance of conceiving without intervention.
Even though it may be more challenging, it’s still possible to have a healthy pregnancy with PCOS. Hormone regulation through diet and exercise, as well as the use of certain medications, can help get PCOS under control, restore normal ovulation, and boost the chance of conceiving.
Women with PCOS who become pregnant have a higher risk of pregnancy complications. They are more likely to experience:
- Early labor
- High blood pressure (preeclampsia)
- Gestational diabetes
Diagnosing PCOS requires blood tests and a physical examination, sometimes including a transvaginal ultrasound. PCOS is considered by doctors to be a “diagnosis of exclusion” which means they first run a series of tests to ensure that a person doesn’t have any other possible cause of their symptoms and then they can diagnose PCOS.
If you or your healthcare provider suspects you may have PCOS, they will ask you about your menstrual cycle, and take a thorough medical history, including asking questions about any pregnancies or attempts to conceive. They will likely test a series of hormones in your blood, including LH, FSH, and AMH, as well as evaluate your thyroid function. They may also check your Hba1c which reflects your blood sugar levels over the past few months since an imbalance in those levels and a diagnosis of pre-diabetes or diabetes is so common among people with PCOS.
During a transvaginal ultrasound, a healthcare provider will ask you to undress from the waist down and use an ultrasound wand covered with a latex condom and then lubricated using lubricating jelly to examine your ovaries through your vagina. Let your healthcare provider know if you’ve never had penetrative sex or if you experience any pain during the procedure.
One of the hallmark signs of PCOS is excessive cyst formation on the ovaries. Small cysts naturally form on the ovaries every month as part of normal egg development, particularly in younger women, so they will count the number of cysts they see to determine if you reach the threshold for diagnosis.
Two of the following three criteria must be present to be diagnosed with PCOS:
- Chronic anovulation: Long menstrual cycles with greater than 35 days between the first day of one period and the first day of the next.
- Hyperandrogenism: High levels of androgen hormones/testosterone which can be diagnosed as excessive hair growth, severe and persistent acne, or other features.
- Polycystic ovaries: Presence of cysts or fluid-filled sacs in the ovaries
“If you’re experiencing the symptoms of PCOS,” says Dr. Henigsman, “it’s important to see a health care provider to establish the diagnosis or rule out other causes so you can begin treatment.”
Other conditions, like hypothyroidism, can often cause weight gain, scalp hair loss, and menstrual irregularities, and must first be ruled out to reach the diagnosis.
Treatment for PCOS
There is no cure for PCOS. Still, you can manage the symptoms through lifestyle changes and medication.
Often, hormonal birth control containing progestin or progesterone is used to help regulate hormone levels and menstrual cycles. This can take the form of pills, patches, vaginal rings, or a hormonal IUD.
The hormone progestin helps to decrease luteinizing hormone (LH) levels, which may help lower androgen hormone levels.
Research suggests taking progestin helps:
- Restore and stabilize hormone balance
- Regulate ovulation
- Manage symptoms, like acne and hair changes
- Lower the risk for endometrial cancer by normalizing the uterine lining
Other medications may be used for PCOS to help manage other health problems, such as:
- Metformin: This medication helps to improve insulin resistance and lower insulin levels.
- Clomiphene: This medication helps induce ovulation and may help women with PCOS become pregnant.
- Spironolactone: This medication may help lower androgen levels and is sometimes used to help with excess hair growth and acne. Keep in mind that this medication cannot be used if you are trying to conceive and therefore should be used in conjunction with birth control if you are sexually active with a fertile male partner.
Diet and lifestyles changes for PCOS
A healthy diet, weight maintenance, and exercise help to manage your PCOS symptoms. Often, these changes are recommended as the first step to managing PCOS before trying medications or hormone therapies. Weight loss on its own in people with PCOS who also have overweight or obesity has been shown to alleviate symptoms for some people and even restore normal periods, ovulation, and fertility.
There is no one diet used to treat PCOS. Diet plans should be adapted to meet your needs and help manage your unique symptoms and tolerance. Typically, the goals of dietary changes are to help with insulin resistance, maintain a healthy weight, manage other symptoms, and support your health.
Diet changes often recommended for PCOS can include:
- Lower carbohydrates: Insulin is a hormone that helps bring glucose (sugar) in from the blood. Since people with PCOS tend to have problems with insulin resistance, it’s recommended to limit simple carb and sugar intake. Instead, try to eat carbs high in fiber, such as legumes, oats, vegetables, fruits, and whole grains.
- Eat plenty of protein: Protein takes longer to digest and absorb, so it helps to stabilize blood sugar levels when included with meals.
- Eat monounsaturated fats: Some research suggests eating monounsaturated fats aids in weight management for people with PCOS.
Research suggests that physical activity is important for people with PCOS because it may help regulate menstruation and ovulation frequency. Guidelines recommend at least 150 minutes (2.5 hours) of physical activity per week.
Potential benefits of exercise for people with PCOS include:
- Increased heart health
- Weight maintenance
- Increased insulin sensitivity
- Lower insulin levels
- Menstrual cycle regulation
Healthy weight maintenance
Overweight is common for people with PCOS. Research suggests maintaining a healthy weight may help improve insulin resistance and other symptoms.
Maintaining a healthy weight is often challenging for people with PCOS because of hormone imbalances. Try to focus on healthy habits and talk with your healthcare provider for tips on how to maintain a healthy weight with PCOS.
Based on your BMI and medical history, your healthcare provider may recommend using medication to manage your weight and blood sugar. Medications known as GLP-1 agonists, including drugs like Ozempic (see Important Safety Information), Wegovy (see Important Safety Information), and Mounjaro, can be prescribed to help people lose weight and may be a good option for some people with PCOS.
When to see a healthcare provider
If you’re experiencing PCOS symptoms, share your concerns with your healthcare provider as early as you can. Diagnosing PCOS early can help you better manage your symptoms and lower your risk for complications.
A healthcare provider can also support you if you have PCOS and you’re trying to get pregnant.
Talk with your healthcare provider if you experience:
- Heavy bleeding and severe menstrual cramps
- More than 35 days from the start of one period to the start of the next
- Trying to become pregnant without success for more than 12 months
Your gynecologist may refer you to an endocrinologist (a doctor specializing in endocrinology or hormonal health) to help manage your hormone levels.
With the support of your healthcare provider, you can manage your PCOS symptoms. Uncontrolled PCOS can lead to an increased risk for other health problems. With diet, lifestyle, and medications, you can help manage your PCOS symptoms.
If you have any medical questions or concerns, please talk to your healthcare provider. The articles on Health Guide are underpinned by peer-reviewed research and information drawn from medical societies and governmental agencies. However, they are not a substitute for professional medical advice, diagnosis, or treatment.
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Yael Cooperman is a physician and works as a Senior Manager, Medical Content & Education at Ro.