Polycystic ovary syndrome, or PCOS, is a common yet severely misunderstood disorder that affects millions of people worldwide. If you’ve been struggling with PCOS, then you aren’t alone. Despite its prevalence, more than 70% of people with PCOS remain undiagnosed,external link, opens in a new tab as their symptoms are often misconstrued as signs of normal hormone fluctuations.
Living with PCOS can be frustrating and overwhelming. But here’s the truth: PCOS is more than just missing periods or unexplained weight gain. It’s a complex metabolic and endocrine condition that impacts your health and life. So, how do you recognize the signs, take control of your health and decide when to seek medical attention? This PCOS guide can help you do all of that.
What is PCOS?
PCOS is a hormonal condition that affects many people who were born with a uterus and ovaries. Essentially, the ovaries produce more androgens than are produced in people without PCOS. This can lead to things like irregular periods, ovarian cysts, weight gain, acne, body hair growth in places it usually isn’t, or increased body hair in places you’d more likely expect to see it.
One of the big challenges with PCOS is that it can mess with ovulation, which, on top of making conception difficult if and when that’s something someone wants, can worsen PCOS symptoms. Additionally, anovulation can lead to the thickening of the uterine lining, which can increase the risk of endometrial hyperplasia and cancer. Many people with PCOS also deal with insulin resistance, which can increase the risk of type 2 diabetes and other metabolic issues down the road.
PCOS commonly shows up with these kinds of symptoms, but it doesn’t look the same for everyone. Some people have mild symptoms that are easy to brush off, while others face more intense hormonal issues that can leave you feeling overwhelmed. Despite the name, not everyone with PCOS even has ovarian cysts, and having cysts doesn’t automatically mean you have it. Confusing, right? What’s important to know is that PCOS isn’t just about and doesn’t only impact your ovaries.
Common Myths and Misconceptions About PCOS
There are many misconceptions about PCOS, some of which can lead to delays in diagnosis or treatment. Some of the most common false beliefs about PCOS are that:
- PCOS only affects larger people
- Individuals with PCOS can’t get pregnant
- Cutting carbs and restrictive diets will fix PCOS
- PCOS is caused by a lack of exercise or poor diet
- PCOS is just a reproductive issue
- Contraceptive pills are the only treatment for PCOS
Now that we know a few myths about PCOS, let’s look at the facts that debunk them:
- People of all sizes and shapes can have PCOS
- People with PCOS can become pregnant and have healthy pregnancies
- Following a well-balanced diet with complex carbohydrates and grains can help control PCOS symptoms such as insulin resistance
- PCOS is caused by a combination of insulin resistance, hormonal imbalances, and genetic and environmental factors.
- PCOS is a hormonal and endocrine disorder
- There are a range of possible treatments for PCOS
Causes and Risk Factors
While the exact causes of PCOS are still unclear, many believe it is the result of a combination of genetic, hormonal, and environmental factors. Let’s break it down:
1. Hormonal Imbalance and Insulin Resistance
Insulin resistance is a major player in PCOS. Insulin, a hormone made by the pancreas, acts like a key, helping cells absorb glucose from blood to use as energy. But if you’re insulin resistant, your cells stop responding well to insulin, leaving glucose stuck in your bloodstream. Your pancreas, trying to fix the problem, pumps out even more insulin, leading to hyperinsulinemiaexternal link, opens in a new tab, which is a condition where insulin levels are abnormally high.
This excess insulin doesn’t just affect your blood sugar, but it also messes with your ovaries. High insulin levels push your ovaries to produce more androgens, like testosterone. While everyone has some androgens, if your body is a kind that is estrogen-rich, as is the case for most folks born with a uterus and ovaries, more androgens than usual can do things like causing irregular or missed periods, acne, extra body hair growth, hair thinning, and more.
This creates a vicious cycle. High androgens can make insulin resistance worse, and insulin resistance can lead to weight gain, which further fuels the problem. This cycle not only worsens PCOS symptoms but also increases the risk of conditionsexternal link, opens in a new tab like type 2 diabetes. The good news? By improving insulin sensitivity through diet and exercise, you can break the cycle and feel better.
2. Genetic Factors and Family History
Genetics are known to play a big part in PCOS. If your mom, sister, or cousin has it, your chances of developing it are higher. Research shows that people with PCOS often experience similar symptoms to their close relativesexternal link, opens in a new tab with PCOS, like irregular periods and insulin resistance.
There are several genes linked to PCOS, including those involved in hormone regulation, insulin signaling, and inflammation. For example, variations in the FSHR and LHCGR genesexternal link, opens in a new tab, which affect the reproductive cycle, are tied to ovarian dysfunction and high androgen levels. Genes like INSR and PPARG, which influence insulin resistance, also play a role.
However, no single gene causes PCOS. Instead, it’s likely the result of multiple genetic variants working together, each contributing a small effect. This complexity makes it challenging to pinpoint specific genetic markers for diagnosis or treatment, but ongoing research offers hope for better understanding and managing the condition.
3. Environmental Factors and Lifestyle
While genetics play a big role in PCOS, environmental and lifestyle factors are understood to be just as important. A sedentary lifestyle and a diet high in refined carbs and saturated fats can worsen insulin resistanceexternal link, opens in a new tab.
Exposure to endocrine-disrupting chemicalsexternal link, opens in a new tab like bisphenol A (BPA) and phthalates, often found in plastics, can also impact PCOS. These chemicals interfere with hormone signaling, potentially worsening hormonal imbalances. Studies show that people with PCOS often have higher BPA levelsexternal link, opens in a new tab, linking these chemicals to the condition.
Stress and poor sleep further complicate things. Chronic stress raises cortisol levelsexternal link, opens in a new tab, disrupting hormones like insulin and androgens. Poor sleep, meanwhile, is tied to increased insulin resistance and weight gain; both are common struggles for those with PCOS.
Symptoms and Diagnosis
PCOS symptoms can vary widely from person to person, which is why it’s often underdiagnosed or misdiagnosed. It presents differently in each individual, making it a challenge to identify without a thorough evaluation. Common symptoms include:
- Irregular, infrequent, or absent periods: This is one of the most common signs of PCOS. Irregular ovulation or the absence of ovulation (anovulation) can lead to unpredictable menstrual cycles.
- Heavy or prolonged periods: When periods do occur, they may be unusually heavy, more painful, or last longer than normal.
- Excess facial or body hair (hirsutism): High levels of androgens can cause hair growth in areas people with a uterus might not expect, like the face, chest, or back.
- Acne or oily skin: Androgens can increase sebum production, leading to persistent acne of the body or face.
- Weight gain or difficulty losing weight: Insulin resistance and hormonal imbalances can make it harder to maintain a given weight.
- Thinning hair or a recedeing hairline: Elevated androgens can cause hair thinning or loss on the scalp.
- Darkening of the skin (acanthosis nigricans): This often occurs in skin folds, such as the neck, groin, and underarms, due to insulin resistance.
- Skin tags: Skin tags are small, benign growths of skin often found in areas where the skin rubs together.
- Mood Swings: Hormonal fluctuations can lead to drastic changes in moods, including anxiety, irritability, low moods or mild depressive episodes.
How is PCOS Diagnosed?
To be diagnosed with PCOS, you typically need to meet at least two of the following criteria (known as the Rotterdam criteria):
- Irregular or absent periods
- Signs of high androgen levels (either through symptoms or blood tests)
- Polycystic ovaries on an ultrasound
Tests and Exams:
There is no single test for PCOS, but there are a few ways that can aid in diagnosis:
- Medical history and symptom review: Your doctor will ask about things like your menstrual cycle, weight changes, and other symptoms. They may also inquire about your family history since PCOS often runs in families.
- Physical exam: This may include checking for signs of high androgen levels, such as unexpected body hair growth, acne, or male-pattern baldness. Your doctor may also measure your waist circumference and check for acanthosis nigricansexternal link, opens in a new tab, seborrheic dermatitis and, in rare cases, hidradenitis suppurativa (HS).external link, opens in a new tab
- Blood tests: Blood tests to measure your blood sugar levels, glucose tolerance, cholesterol, androgens, and thyroid function.
- Pelvic ultrasound: This imaging test checks for cysts on the ovaries and evaluates the thickness of the uterine lining. However, not all individuals with PCOS have visible cysts, and having cysts doesn’t always mean you have PCOS.
Treatment and Management
There’s no cure for PCOS, but symptoms can be managed effectively with a combination of lifestyle changes, medications, and other therapies.
Lifestyle Changes
- Diet: A balanced diet rich in whole foods, fiber, and lean protein can help manage insulin resistance. Reducing sugar and refined carbs is often recommended to stabilize blood sugar levels. Anti-inflammatory eating plans, like the Mediterranean dietexternal link, opens in a new tab, in particular, have been shown to improve PCOS symptoms.
- Exercise: Regular physical activity, including aerobic exercise and strength or resistance training, can improve insulin sensitivity, aid in weight management, and reduce stress. If you’re mobile, consider increasing your daily step countexternal link, opens in a new tab. Ideally, aiming for 6000-8000 steps can assist with PCOS symptoms. If you’re not, ask your healthcare provider about chair or bed exercise programs.
- Sleep: Prioritizing good sleep is essential, as poor sleep can worsen insulin resistance and hormonal imbalances. Aim for 7–9 hours of quality sleep per night if you can.
- Stress management: Techniques like yoga, meditation, reading, journaling, and cognitive-behavioural therapy (CBT) are some options to help reduce stress. You might also want to take a look at this list of self-care options: taking care of yourself is a big help in managing and reducing stress.
Medications
- Birth control pills: Combination birth control pills are often the go-to treatment for PCOS, especially if you’re not trying to conceive. They work by decreasing androgen levels, keeping estrogen levels where they should be to keep symptoms at bay and also protecting the lining of the uterus against abnormal cell growth, which can cause cancer.
- Metformin: Originally designed to treat type 2 diabetes, metformin has become a staple in PCOS management. It works by improving insulin sensitivity, which can help the body use insulin more effectively.
- Anti-androgen medications: If you’re struggling with symptoms like acne, body hair growth, or hair loss, anti-androgen medications might be your new best friend. Drugs like spironolactone work by blocking the effects of androgens in your body.
Fertility and Other PCOS Struggles
If you’re trying to conceive with PCOS, you might feel frustrated or overwhelmed. Here’s the deal: PCOS can lead to irregular or absent ovulation. Because you need ovum to become pregnant, no ovulation obviously makes getting pregnant a lot trickier.
But here’s the good news: PCOS doesn’t mean you can’t become pregnant or have a baby. It just means you might need a little extra help. That said, it’s important to be aware that PCOS can also increase the risk of complicationsexternal link, opens in a new tab during pregnancy, like gestational diabetes, preeclampsia, and preterm birth. That’s why working closely with your healthcare providers is key.
Here are a few treatment options for conceiving with PCOS:
- Medications: Drugsexternal link, opens in a new tab like clomiphene and letrozole are often the first step. They help stimulate ovulation, and letrozole, in particular, has been shown to be more effective for people with PCOS.
- Surgery: In some cases, a minor procedure called ovarian drillingexternal link, opens in a new tab might be recommended to kickstart ovulation.
- Assisted Reproductive Technologies (ART): If medications or surgery don’t do the trick, options like intrauterine insemination (IUI) or in vitro fertilization (IVF) can help. IUI involves placing sperm directly into the uterus during ovulation, while IVF involves retrieving eggs, fertilizing them in a lab, and then implanting them.
Related Health Risks of PCOS
Living with PCOS isn’t just about managing symptoms. It’s also about being aware of the bigger picture. Here are a few health conditions that those with PCOS are susceptible to.
- Type 2 Diabetes: Thanks to insulin resistance, people with PCOS have a higher risk of developing type 2 diabetesexternal link, opens in a new tab due to their higher blood sugar levels.
- Sleep Apnea: Did you know PCOS can affect your sleep? Those with PCOS are more likely to develop sleep apneaexternal link, opens in a new tab, a condition where breathing repeatedly stops and starts during sleep. This is linked to weight gain and insulin resistance. If you’re feeling excessively tired during the day, it’s worth discussing with your doctor.
- Endometrial Cancer: People with PCOS have a greater chance of developing endometrial cancer. Issues such as insulin resistance, anovulation, and higher levels of estrogen can lead to the thickening of the uterine lining or endometrial hyperplasia.
- Non-alcoholic Fatty Liver Disease (NAFLD): People with PCOS have higher levels of insulin in the blood. This excess of insulin is stored as fat in your liver. Over time, the fat accumulation in the liver can increase inflammation and lead to NAFLDexternal link, opens in a new tab.
Living with PCOS
Living with PCOS can feel like a rollercoaster at times. With the unpredictable symptoms and the emotional ups and downs, it’s easy to feel overwhelmed. But here’s the thing: you’re not alone. Millions of people around the world navigate life with PCOS, and there are communities out there for support. Let’s talk about how you can take charge of your health and thrive with PCOS.
You’re Not Alone
Knowing that you’re part of a global community might provide you comfort in living with PCOS. Whether it’s through online forums, social media groups, or local meetups, connecting with others who understand what you’re going through can be helpful and empowering. These spaces are perfect for sharing tips, venting frustrations, mutual aid, and celebrating victories.
For example, online communities like PCOS Challengeexternal link, opens in a new tab and DAISy-PCOSexternal link, opens in a new tab or subreddits like r/PCOSexternal link, opens in a new tab are filled with people who get it. They’ve been where you are, and they’re full of practical advice, from the best supplements to how to talk to your doctor about your symptoms.
Self-Care Isn’t Selfish, It’s Essential
When you’re dealing with PCOS, self-care isn’t just a buzzword; it’s a necessity. This doesn’t mean you need to spend hours meditating or splurge on expensive spa days. Self-care can be as simple as taking a few minutes each day to do something that makes you feel good, whether that’s reading a book, going for a walk, or enjoying a cup of tea. Here’s that list again to give you some ideas.
Managing PCOS is a marathon, not a sprint. It’s about finding small, sustainable ways to care for yourself, body and mind. For some, that might mean meal prepping to stay on top of a PCOS-friendly diet. For others, it could be setting boundaries to protect your mental health. Whatever it looks like for you, remember: taking care of yourself isn’t selfish.
Celebrate the Wins
Living with PCOS can sometimes feel like an uphill battle, but it’s important to celebrate your progress along the way. Did you stick to your exercise routine this week? That’s a win. Did you finally find a skincare routine that works for your acne? Another win. Did you advocate for yourself during a doctor’s appointment? Huge win.
Every step forward, no matter how small, is worth celebrating. And on the days when things feel tough, remind yourself that you’re doing the best you can, and that’s more than enough.
The Bottom Line
PCOS can feel overwhelming, but with the right tools and support, it’s usually manageable. Whether you’re navigating irregular periods, fertility struggles, or other symptoms, treatments and lifestyle changes can make a difference. Remember, you’re not alone. There’s a whole community and plenty of resources ready to help you along the way.
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