What is PCOS? (Because People Should Know, and You’re People)

We’ve come to realize that many of our readers have questions about PCOS. What is PCOS? What causes it? What are its symptoms? Can you heal it?

PCOS stands for Polycystic Ovarian Syndrome; it’s a complicated condition that can present differently in different people. So, we’re not surprised you have questions; many people do.

In this blog post, we’ll try to answer some of the most common questions we’ve seen about PCOS. We’ll discuss what PCOS is, what causes it, how it’s treated, and the long-term implications of it too.

Let’s get into it! 

What is PCOS?

PCOS is an endocrine disorder, aka a hormonal disorder. In fact, it’s the most prevalent endocrine disorder in women of childbearing age in the world; as many as 9-18% of women have PCOS and unfortunately, there is no cure.1

To get a picture of how the hormones of women with PCOS differ from those without the condition, let’s first look at a healthy ovulation cycle.

In a woman without PCOS, the pituitary gland secretes follicle-stimulating hormone (FSH), and that FSH “chooses” one egg each month for ovulation. The chosen egg grows and prepares for possible implantation fertilization while also producing estrogen. The estrogen that the egg produces signals to the brain that ovulation has taken place. From here, the body moves through the rest of the steps for a monthly cycle unless interrupted by a pregnancy.2

However, in PCOS, the hormonal messages/instructions are altered and result in anovulation (no ovulation).2

You see, in PCOS, a larger-than-average number of eggs are released each month, which dilutes the FSH between all the follicles (eggs) in the ovary and prevents one egg from being “chosen” for ovulation. But, these follicles each produce a tiny amount of estrogen, and all together they will still produce enough estrogen to trick the brain into thinking that ovulation has taken place, even though it hasn’t. Then, the body moves forward in the monthly cycle without having ovulated. In PCOS, women get stuck in a loop of FSH-to-Ovaries-to-Estrogen-to-Brain, and around and around again without necessarily ovulating.2

When the ovaries are stuck in this loop, the pituitary gland produces large amounts of luteinizing hormone (LH), which tells the ovaries to produce high amounts of testosterone. High testosterone levels can cause the acne and male pattern hair growth that many people associate with PCOS.2 Isn’t it just lovely?

How is PCOS Diagnosed?

To diagnose PCOS, doctors use the Rotterdam Criteria, and to be diagnosed with PCOS, a woman must meet at least two of the three listed below. The Rotterdam Criteria are:

1. Irregular Periods

In PCOS, women typically have very irregular periods and this criterion is met if she only menstruates nine or fewer times per year and/or her menstrual cycle is longer than 35 days in length on average.2,3

2. High Androgen Levels

Androgens are sex hormones that are typically seen in high amounts in men but are often present in high amounts in women with PCOS. The presence of high levels of androgens can be diagnosed using a blood test, or your doctor may use phenotypic criteria (physical symptoms) to diagnose it.

Physical symptoms of high androgen levels in women include acne and hirsutism (male pattern hair growth such as facial and neck hair, and/or male-pattern baldness).2,3

3. Polycystic Ovaries

Despite the misleading name, this doesn’t actually mean cysts on the ovaries. The term “polycystic ovaries” describes the presence of many eggs/follicles in the ovary at once, which is the classic sign of PCOS and also where the condition got its name from.

The reason the eggs are referred to as cysts is that they are fluid-filled structures within the body, and therefore meet the definition of a cyst, but they are not abnormal growths as the name may lead you to believe.2,3

If your doctor recommends an ultrasound, they will be looking for ovaries that have lots of eggs/follicles on them, like the pictures below.

(And just a forewarning about the ultrasound, it’s a transvaginal ultrasound, meaning the doctor/technician will use an ultrasound wand inserted into your vagina to get imaging of your ovaries. We’ve heard of so many women who didn’t know this beforehand and were a little traumatized when they found out. So, we’re just letting you know.)

Image: 4 The small black dots on the images with numbers next to them are eggs in one ovary. Each picture examines the ovary from a different angle. The tech who took the images above counted and numbered each follicle so, we can see that this ovary has 39 immature follicles in it!

So, if your doctor is helping you with some hormone-related problems and sees that you meet at least two of the criteria on this list, they may diagnose you with PCOS and start you on treatment.

How is PCOS Treated?

The treatment options for PCOS really depend on the goals of the person diagnosed.

If you went to your doctor because you were having trouble conceiving, the treatment would be quite different than if you were there because you wanted relief from bothersome symptoms.

Typically, women with PCOS fall into three distinct treatment categories:

1. Women who are trying to conceive but are having difficulty because of their PCOS.

Women who are trying to conceive but who are having difficulty because of anovulation and other hormone issues related to PCOS may be put on hormone-modulating medications to help their bodies create a mature egg to ovulate so that it can be fertilized, aka create a pregnancy.3

2. Women who are not trying to conceive but who are experiencing bothersome symptoms that they want relief from.

Treatment options for cases like these range from birth control to help normalize levels of female sex hormones, to Metformin to help with managing blood glucose levels, to medical nutrition therapy to help with issues like acne, hirsutism, and weight management problems.3

3. Women who are diagnosed with PCOS because of their doctor’s findings, but who don’t feel bothered by any symptoms.

While some women who are diagnosed with PCOS may not be bothered by any particular symptoms at the time of their diagnosis, it’s still important that they receive treatment in order to control the disease and keep any minor symptoms from escalating, as well as to help avoid commonly associated conditions such as type 2 diabetes, heart disease, obesity, and even cancer.3

Health Risks of PCOS

Cancer

Way to just throw out the C-word without any explanation! What do you mean cancer is associated with PCOS?

Before you tailspin and lose your cool, let’s get one thing straight. PCOS doesn’t automatically lead to cancer, but untreated PCOS can put women at an increased likelihood of endometrial cancer.3

The average woman has a chance of about 15 in 100,000 of getting this kind of cancer, but women with PCOS have a much higher chance of about 226 in 100,000.5

Before you freak out though, let’s do the math. This translates to a risk of 0.015% for the average woman and 0.226% for a woman with PCOS in any given year of her life.5

As you can see, it’s not super common, but it is something to be aware of and work to avoid.

Not Cancer

The other health risks associated with PCOS are much more common and honestly, can be just as devastating to your health if they are not managed appropriately.

However, these other health problems are usually manageable with lifestyle modifications like diet, exercise, stress management, and/or treatments such as medications and/or supplements.

Let’s take a peek at some of the diseases that commonly accompany PCOS and discuss management options you can bring up with your healthcare provider if needed:

1. Type 2 Diabetes

Diabetes is one of the most common diseases associated with PCOS because of the hormonal disruptions that both diseases are characterized by. In fact, approximately 50% of women with PCOS will be diagnosed with Type 2 diabetes by the age of 40.1

Earlier in this post we mentioned that PCOS, if left unchecked, can dramatically increase the amount of androgen hormones a woman produces, specifically testosterone. When testosterone is elevated in women, insulin sensitivity often declines, which can then lead to insulin resistance and hyperinsulinemia (high blood insulin levels). In turn, high insulin levels can lead the body to increase the amount of testosterone even more…and around and around it goes, getting worse with each cycle.6

This cycle creates a huge risk factor for type 2 diabetes. You see, the more insulin resistant you become, the less glucose is taken from your blood and into your tissues after you eat, which increases blood glucose levels.

The higher your blood glucose levels become, the more insulin the pancreas secretes in order to try and help the cells absorb the glucose. This can lead to hyperinsulinemia. 

High insulin and high blood glucose are hallmarks of type 2 diabetes and can lead to widespread blood vessel damage and heart disease.7

If you have PCOS and you think you have insulin resistance, please talk to your doctor and get tested. Once confirmed, your doctor can treat the condition to help you feel better and improve your health.

Treatments for insulin resistance are varied and include things like drugs such as Metformin, lifestyle modification like getting regular exercise, medical nutrition therapy with a registered dietitian, or even supplementation with certain natural products. 

2. Obesity

Again, because of the hormonal disruptions caused by PCOS, women with this condition are at a much higher risk of becoming overweight or obese.

You see, if a person has insulin resistance, and over 60% of women with PCOS do, then that means a lot of the food that they eat doesn't ever make it out of the bloodstream and into the tissues that need the energy (glucose).8 Instead, the glucose (energy) from the food they eat just stays in the bloodstream waiting to get into cells, but is eventually just converted to stored energy, aka fat tissue.

Many women with PCOS struggle with low energy levels and weight gain, even when they follow a healthy diet and exercise regularly. This is because their hormones are redirecting the energy from their food away from their cells and making more fat tissue instead. (Yeah, we know how much that sucks.)

This kind of cellular energy deprivation can lead to intense, frequent carbohydrate cravings as the body tries to get energy to the hungry cells. These cravings are hard to resist and usually lead to more weight gain.9

Again, your doctor will probably recommend many of the same treatments for this kind of weight gain/obesity as she might for insulin resistance in PCOS, because they are caused by the same factors.

3. Heart Disease

Because women with PCOS are at increased risk for obesity and diabetes, they are also at an increased risk for heart disease. Diabetes and obesity can increase the risk/severity of heart disease because of their effect on the cardiovascular system.9

As mentioned above, high insulin and blood glucose levels are damaging to blood vessels. Also, the potentially high-carbohydrate diet that many women with PCOS have because of their cravings can lead to increased LDL cholesterol levels, which are another risk factor for heart disease.9

Unsurprisingly, treatments to avoid heart disease are similar to those listed for diabetes and obesity, since you’re working to break that hormonal cycle that’s at the heart of the problem. But, if you’re already showing signs of heart disease, your doctor may recommend certain cholesterol-lowering medications, or other drugs and supplements meant to help the cardiovascular system function more healthfully.

4. Eating Disorders

Because of the intense food cravings we discussed above, eating disorders are much more common in women with PCOS than in women without the disease. In fact, a recent study found that women with PCOS are four times more likely to exhibit disordered eating patterns than women without the condition, and another study found that 60% of women with both PCOS and obesity met the criteria for binge eating disorder.1,9

This high number is almost certainly related to the very high levels of insulin typically found in women who have both of these conditions, since high insulin levels can cause intense cravings.1,9 The combination of uncontrolled weight gain, poor energy levels, and uncontrollable cravings can lead to binge eating and/or binging and purging behaviors.

If you think you may be struggling with an eating disorder, please speak with a healthcare professional who can offer appropriate care. You are not alone in this and what you’re going through is likely closely tied to other factors in your body. Please don’t be afraid to ask for help if you need it.

• Click here to find out how you can get help now if you’re struggling with an eating disorder.

• Here is a link to the PCOS Awareness Association’s Crisis Center where you can contact someone for help if you need it.

Oy Vey!

Now that you’re thoroughly depressed and wondering what in the world you can do about your PCOS, pop over to the next blog post where you can read about management strategies.

Despite its horrible reputation, PCOS can actually be managed quite well for many women, but there is no one-size-fits-all approach, which can be discouraging since many of the therapies you try may not work for you.

It’s also very important to be mindful of the fact that hormones take their sweet time to respond to changes in their environment. So, if you’re trying a new diet, medication, or supplement, you will likely need to be quite strict in your approach to it for several months, if not a year or more, before you start to see measurable results.

This is an unfortunate reality that isn’t talked about much in today’s culture of instant gratification and fix-it-now attitudes. Our bodies often require a level of patience and care that isn’t commonly found in our fast-paced society, and this is especially true with PCOS.

So, before you move on and read the next post, take a moment to breathe and thank your body for all the amazing things it does for you every day. Remind yourself that you are beautiful and worthy of gentle, restorative care that moves at your body’s unique pace.

 Questions

Did we help you understand PCOS a little better? What are some PCOS questions you still have? Find us on Facebook, Instagram, Pinterest, and TikTok!

In parting, remember that eating healthy, whole foods, and lots of plant foods is one of the simplest, safest, and most effective things we can do to promote good health in our bodies. As with every preventative/restorative measure though, sometimes these changes alone are not enough to help our bodies function the way we want or need them to.

If you are struggling with health problems, please contact your doctor or other healthcare provider such as a Naturopathic Doctor, Dietitian, or Mental Health Professional to see if they can offer appropriate guidance and care. We at Wholesome Story believe that healthy communities require community effort, so we advise you to keep your healthcare community aware and involved in your journey as you pursue better health.

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