The Signs and Symptoms of PCOS
By Allison Scheinfeld, Registered Dietitian
The views and opinions expressed are those of the authors and should not be considered medical advice. Always consult your doctor for the most appropriate treatment. Please refer to the American Society for Reproductive Medicine (ASRM) for the most up-to-date information on PCOS.
What is polycystic ovary syndrome (PCOS)?
Polycystic ovary syndrome (PCOS) is an endocrine and hormonal disorder that can affect women’s health during the reproductive age, from initial menstruation to menopause. It was identified in 1935 and today, it’s estimated to affect 5% to 10% of childbearing-aged women in the United States. PCOS is one of the most common causes of infertility.
What causes PCOS?
Researchers and health care providers have not found one specific cause of PCOS—the direct cause is still unknown. A common theory is that it is caused by insulin resistance. This is found in women with PCOS regardless of their body weight.
There is also a genetic component to PCOS. You may be more likely to have PCOS if a relative has a medical history of it. PCOS can run in families, but if a relative has it, that does not necessarily mean other family members will have it too.
Though there are many reasons one might have PCOS (which is why it’s referred to as “multifactorial”), research has found that PCOS may also have an environmental component, such as exposure to chemicals that are known as endocrine disruptors (EDs) like BPA. Other environmental factors can be smoking nicotine, poor diet, eating foods packaged in plastic, and the ingestion of alcohol.
What are the first signs of PCOS?
An irregular menstrual period is often the first sign of PCOS (though the first sign can vary from person to person). Some have irregular periods from the start, while others may have a regular period for years and then suddenly switch to irregular periods. That said, not all women with PCOS have an irregular period, and they often only find out about PCOS when they are trying to conceive. Other signs of PCOS include hair growth (or loss) and severe acne.
What is a PCOS blood test?
Due to the fact that it is multifactorial, and the severity of signs and symptoms vary greatly, there isn’t one specific blood test done to diagnose PCOS. PCOS is a diagnosis of exclusion, meaning it’s important to rule out other conditions that can mimic PCOS. This can be done by checking certain hormone levels (such as TSH and prolactin) and additional testing (such as glucose tolerance tests). There are also other hormone levels and markers that can be measured, including:
- Testosterone would be high with PCOS. These high levels are responsible for many physical symptoms of PCOS including acne, excess hair growth, and hair loss
- Follicle-stimulating hormone (FSH), which stimulate the ovaries to produce eggs, can be low or normal with PCOS
- Luteinizing hormone (LH), which causes the ovaries to release an egg, can be high with PCOS
- Dehydroepiandrosterone sulfate (DHEA-S) can be high in people with PCOS
- Anti-mullerian hormone (AMH) can be used to estimate how many follicles are in the ovaries. High AMH levels are seen in women with PCOS
- Estrogen, a hormone that plays a role in normal reproductive development in women, can be normal or high with PCOS
- Insulin, which helps lower blood glucose by moving the glucose into the cells for use, may be elevated with PCOS
- Hemoglobin A1c is a 3-month average of blood glucose, normally used to diagnose pre-diabetes or diabetes. Hemoglobin A1c levels may be elevated with PCOS
How is PCOS diagnosed?
Diagnosing PCOS can be tricky, and many women go decades before being clinically diagnosed. This is especially true for women who don’t have many symptoms but then struggle to conceive. A combination of blood tests, physical exam, gynecological exam, and ultrasound can all help with the diagnosis.
Two of the following health problems must be present in order for PCOS to be clinically diagnosed: hyperandrogenism (elevated androgens), ovulatory dysfunction (irregular menses), and polycystic ovaries (ovarian cysts, fluid-filled sacs, seen with an ultrasound).
PCOS signs and symptoms
The majority (70%) of women with PCOS have some level of insulin resistance. Insulin is a hormone that helps move sugar from the blood into the cells to be used for energy. Insulin resistance is when the cells do not fully respond to the insulin, leaving excess sugar in the blood. The body is then triggered to produce more insulin to get the sugar out of the blood. This increase of insulin will then lead to a high production of androgens. This causes a hormonal imbalance leading to problems with egg production and ovulation.
A common symptom of PCOS is what’s known as a “PCOS belly,” excess weight in the abdomen area caused by insulin resistance. Women with PCOS sometimes have reduced absorption of nutrients and/or trouble digesting food due to an imbalance of gut bacteria. This can cause bloating, which adds to the distended abdomen.
Women with PCOS also typically have elevated androgens. High levels of androgens prevent ovulation, which creates anovulation (when the ovaries do not release eggs), leading to irregular menstrual cycles. If an egg isn’t released, it can’t be fertilized by sperm, leading to infertility.
Elevated androgens can lead to physical symptoms that can cause distress in women, such as the abnormal growth of hair on the face and body (hirsutism), hair loss, and acne. Hirsutism often occurs on the jaw line, neck, and chest, while acne is typically seen around the chin and sides of the face. Thinning hair occurs as a side effect of elevated testosterone and is sometimes referred to as “androgenic alopecia.”
Obesity is often linked with PCOS. It’s unclear whether PCOS causes obesity or vice versa, but it has been found that women who are considered overweight (BMI >25) or obese (BMI >30) are at higher risk for developing PCOS. That being said, lean women can also have insulin resistance and high androgens.
Mental or mood shifts
Someone with PCOS is more likely to experience depression and anxiety, partially due to how challenging the symptoms and burden of PCOS can be. Those with PCOS are also at an increased risk to develop things like nonalcoholic fatty liver disease, type 2 diabetes, high cholesterol and sleep apnea.
Lastly, fatigue is often a complaint of women with PCOS. Beyond tiredness, fatigue can affect quality of life. Even though PCOS itself may not be the main cause of fatigue, it can contribute to it in a few ways: side effect of medications, sleep problems, iron deficiency due to heavy periods, and vitamin B-12 or D deficiency
Treatments for PCOS
Diet and lifestyle
Lifestyle changes are the first line of treatment for PCOS, especially for the insulin resistant and weight loss components. This mainly focuses on nutritional changes, but also includes exercise and activity. A combination of strength training and cardio is typically recommended.
Research varies on the specific diet for PCOS, and you may need to use trial and error to find what works for you. Talk to your healthcare provider about what the best diet might be for you. A registered dietitian who specializes in PCOS can also help formulate a personalized plan for you.
PCOS medications, supplements, & vitamins/minerals
There is a variety of prescription medications used to control the symptoms of PCOS, often prescribed in addition to lifestyle changes. Since PCOS manifests differently in each person, there isn’t one specific recommendation for medications—it’s important to talk to a healthcare provider to determine which medications, if any, should be used, and it can also be trial and error to figure out what works best.
In addition to medications, talk to your healthcare provider about which supplements, vitamins and/or minerals may help with your PCOS symptoms (if any).
Common Quick Questions about PCOS:
1. Does PCOS go away?
PCOS doesn’t go away. There is no cure, but there are many ways to manage and live a healthy life with it.
2. How do you know if you have PCOS?
If you have multiple signs and symptoms, you may have PCOS. A fertility specialist (reproductive endocrinologist) or OBGYN can help diagnose this health condition with proper tests and evaluation.
3. Does PCOS cause infertility?
PCOS can cause infertility, but luckily there are medications and treatments that can provide a successful pregnancy for most women.
4. Does PCOS cause weight gain?
Yes, having PCOS makes you more likely to gain weight or have a hard time losing weight.
5. Does PCOS cause hair loss?
Some women with PCOS have hair loss as a side effect of excess androgens and male hormones, but not all women will experience this.