PCOS - Are You One in Ten?

You may have come across the terms PCOS or PCO, or possibly even heard from a gynecologist that you have one of these two conditions without receiving a detailed explanation. We'll help you clarify the terms and delve into the difference between PCO and PCOS, what the conditions actually entail, how your body may react, and what you can do.

Of these two conditions, it is primarily PCOS that can affect your fertility, and many receive the diagnosis when they attempt to conceive. But PCOS can affect much more than just your fertility, and it's often possible to prevent the symptoms, so it's very valuable to identify signs and symptoms as early as possible.

In fact, PCOS is relatively common - it's estimated that up to 10-15% of all women have it. Despite this, there is still much to learn through research, and there is a lack of knowledge both among women themselves and within healthcare. Reports show that affected women may need to wait up to two years before a diagnosis is made, and they often have to see three or more doctors before a diagnosis can be established. Therefore, being an informed patient can be very beneficial when it comes to PCOS!

What is the difference between PCO and PCOS?

PCO stands for polycystic ovaries and literally means that you have many (poly) ovarian cysts on your ovaries. This can be detected by ultrasound, which shows a so-called string of cysts. About one-third of all women have ovaries that look like this, and in many cases, it's nothing to worry about. There are many different reasons why you can have many cysts, such as being in puberty, having an underactive thyroid, or taking hormone medications (such as contraceptives). You can temporarily have polycystic ovaries, and the appearance of your ovaries can vary over time.

PCOS, polycystic ovary syndrome, is something else despite the very similar name. Most people with PCOS have polycystic ovaries just like in PCO, but PCOS also causes a range of other symptoms. It's a hormonal imbalance that also manifests through irregular or absent menstruations, male-pattern hair growth, and acne. It's important to understand this difference between PCO and PCOS when making a diagnosis - for example, a PCOS diagnosis cannot be made solely through ultrasound!

PCOS - what do the symptoms look like and what can it lead to?

PCOS is not a simple condition - the symptoms can vary from person to person and over time. Symptoms often begin to appear when you enter puberty, and for many, the symptoms actually decrease with age. Your lifestyle and potential weight gain can also affect the degree of symptoms, which we'll explain in more detail below.

Common symptoms of PCOS are:

• Polycystic ovaries.
• Menstrual irregularities - infrequent ovulation and menstruations (cycles longer than 35 days) or completely absent menstruation.
• "Male-pattern hair growth" - increased hair in the face, abdomen, and thighs.
• Acne.
• Hair loss or thinning.
• Difficulty losing weight - often fat around the abdomen that is hard to get rid of.

If you constantly have very irregular menstruations or none at all, you should always seek help to investigate the reason - it may be due to PCOS, but also a range of other things. Additionally, if you have several of the above symptoms, it's important to ensure that your doctor conducts a thorough examination to confirm PCOS - read more about how a diagnosis is made below.

PCOS and Fertility

Many receive their PCOS diagnosis when they discover they have difficulty becoming pregnant. The reason PCOS can make it harder for you to become pregnant is that it affects your ovulation - you either ovulate very rarely or not at all (and therefore have menstruations infrequently or never). Ovulation is required for you to become pregnant, and if you ovulate very irregularly, it can be difficult to identify your fertile days, which also occur less frequently if you have PCOS.

It's absolutely not impossible for women with PCOS to become pregnant, but it may take longer and often requires assistance.

Long-term Consequences of PCOS

Untreated PCOS can ultimately lead to not only fertility problems, but also an increased risk of serious diseases like diabetes, cardiovascular diseases such as high blood pressure and heart attacks, and even uterine cancer.

What Happens in the Body with PCOS?

It's still not entirely clear what causes PCOS, but it's believed that the condition is influenced by many factors, both genetic and lifestyle-related.

To understand the causes, it's interesting to delve into two areas - excess androgens ( "male sex hormones") and so-called insulin resistance (reduced sensitivity to insulin). Both of these conditions are common when you have PCOS, and they are what underlie the various symptoms that PCOS presents.

The androgen excess is responsible for polycystic ovaries, menstrual irregularities, increased hair growth, and acne. Insulin resistance is the culprit when it comes to abdominal obesity, increased risk of type 2 diabetes, and cardiovascular diseases.

In fact, there is consideration about changing the name of the condition - the current name is a bit misleading since it only describes how the ovaries may appear in PCOS and doesn't address anything about androgen excess and insulin resistance, which would be more relevant.

Excess of Androgens

In a normally functioning menstrual cycle, the growing follicle (egg sac) produces androgens that are then converted into estrogen. To trigger ovulation with the help of the hormone LH, the brain requires a peak in estrogen. However, in PCOS, one could say that the follicles are idling. Despite this, the brain attempts to induce ovulation and continues to secrete LH, causing your LH levels to remain elevated much longer than normal. Therefore, if you have PCOS, ovulation tests (which look for an LH peak) will not be reliable; you will either get positive results all the time or not at all.

Persistently elevated LH levels lead to increased production of androgens like testosterone and dihydrotestosterone. Additionally, the liver's production of sex hormone-binding globulin (SHBG) decreases, resulting in high concentrations of free testosterone in the blood, leading to symptoms like male-pattern hair growth and acne.

Insulin Resistance or Sensitivity

Insulin resistance means that you cannot effectively utilize insulin, resulting in increased insulin production (hyperinsulinemia). This condition also stimulates androgen production in your ovaries and inhibits SHBG production. SHBG levels usually decrease before an increase in testosterone levels is observed in the blood. Even if your total testosterone level is within normal limits, your level of free testosterone (the unbound portion) may be elevated.

Thus, it can be said that elevated androgen production and insulin resistance influence each other, where insulin resistance triggers increased androgen production and increased androgen production contributes to insulin resistance. It is not entirely established today which of these two factors is the primary cause of PCOS. Most likely, both factors can drive its development.

To diagnose PCOS

Diagnosing PCOS It's important to know that PCOS cannot be diagnosed solely through ultrasound; your doctor must also examine your hormone levels and consider your symptoms. In addition to testing testosterone levels in the blood, your AMH level may be interesting to look at. In PCOS, your AMH level is often high because it is the "immature" follicles on your ovaries that secrete the hormone AMH, and if you have PCOS, you have many of these.

To receive a diagnosis of PCOS, you must have a combination of different symptoms. A number of experts agreed a few years ago on the criteria to be used in diagnosis, known as the "Rotterdam criteria."

You must meet at least two of the following three criteria:

• An ultrasound shows that you have polycystic ovaries, meaning more than 12 follicles on each ovary.
• You have irregular or absent ovulation, which manifests as irregular and long menstrual cycles (longer than 35 days).
• A blood test shows elevated levels of total or free testosterone. And/or you have symptoms of high testosterone levels, such as male-pattern hair growth or acne.

It is also important to rule out other potential causes, such as ovarian tumors that can lead to increased androgen production.

Even though the above criteria are strict, it's important to remember that we are all different, and there is always a spectrum for each criterion. Everyone experiences their PCOS differently, and it can vary over time: some may not be affected much, while others have significant problems that affect their daily lives and general health.

If you suspect you have PCOS, Tilly Fertility Check can provide you with a tool to get the right help - you'll receive hormone levels to bring to your appointment, a checklist of questions to ask, and so on.

Can I have PCOS without cysts or follicles on the ovaries?

According to the Rotterdam criteria, since you only need to meet two out of three criteria to receive a diagnosis of PCOS, it can be confusingly possible to be diagnosed even if you do not have polycystic ovaries. This in itself is a good reason why the name of this condition should be changed!

Does irregular menstrual cycle and absent ovulation mean I have PCOS?

The simple answer is no, because both irregular menstrual cycles and absent ovulation can have many other causes. One example is hypothalamic amenorrhea, which is not caused by the ovaries but rather by the brain "shutting off" your menstrual cycle if you are undernourished or overexercising.

What can I do if I have PCOS?

Since PCOS can manifest in different ways, there is no one method that works for everyone. In conventional medicine, the focus is primarily on relieving symptoms such as acne or troublesome hair growth. Often, hormonal contraceptives (such as birth control pills) and anti-androgens are prescribed to reduce androgen excess.

Alleviating symptoms can be important for your well-being, but it can also be valuable to try to address the underlying causes of your discomfort. Making changes in your lifestyle can improve your hormonal imbalance and insulin resistance. It's always worth trying to see if it has any effect for you.

Maintaining a healthy weight, proper diet, and exercise can help

If you are overweight, losing weight (even as little as 5-10% of your weight) can improve your hormone balance, and over time, this can contribute to a more regular menstrual cycle, which also increases the chances of pregnancy. A healthy weight can also alleviate symptoms like troublesome hair growth or acne, and it also reduces the risk of diabetes and cardiovascular diseases. It's not always easy to lose weight, especially with insulin resistance, so seeking professional help can be beneficial. How much weight loss helps is also individual, and you need to try and see what works best for you and how your body responds.

Even if you are of normal weight, regular physical activity is good, especially strength training, which increases your muscle mass and improves your insulin sensitivity and hormonal balance. Eating a nutritious and balanced diet is also important because through diet, you can stabilize your blood sugar.

In some cases, the diabetes medication Metformin is also used to address insulin resistance.

What do I do if PCOS affects my fertility?

If PCOS is the sole reason for your difficulties in getting pregnant, it is most likely due to irregular or absent ovulation. In this case, you can receive medical help in the form of ovulation induction, which can be done with medications like Letrozole®. However, if it does not yield results, you may consider undergoing IVF treatment.

It's fantastic that there is help available, but it's also important to know that fertility treatments can be very demanding. If, with the help of your doctor, you have identified that you have PCOS, it may be worth trying to first prevent the symptoms and stabilize your cycle. Ideally this should be done before you actively plan to become pregnant. For example, you can start by making some changes in your lifestyle (altering your diet, exercise, and so on) and see how it affects your menstrual cycle. Stabilizing your hormone and insulin levels is beneficial from a general health perspective, not just to increase the chances of becoming pregnant.

We must also point out that fertility is highly complex and dependent on several factors - there may be other factors besides PCOS that come into play. It's important to conduct a thorough investigation where both the woman and the man (if a sperm donor is not used) are tested, so that one doesn't become fixated on one issue and overlook another complicating factor.

If you suspect you have PCOS or want to know more, we recommend heading over to our friends at Ovulai, their app is specifically designed to help women with PCOS. We also recommend visiting PCOS Awareness Assocaiation for a wealth of resources about PCOS.

And, as always, if you are looking for others going through the same thing, join the Tilly community in the Tilly app! Here you can find support in how to cope with the emotional and mental challenges that PCOS can entail.