Polycystic Ovary Syndrome (PCOS)

PCOS Approximately 5 to 13% of all women suffer from this, making it the most common hormonal disorder among women.  It seems that PCOS is slightly more common in women from Southeast Asia and the eastern Mediterranean countries such as Syria, Greece, and Lebanon. It is not known why this is the case. But relatively little is known about it and many people do not even know they suffer from it.

So, what does pcos mean?

First of all, we’d like to make the term PCOS a bit more clear for you. Poly means many, Cystic stands for fluid-filled sacs (cysts) and Ovary, well, that stands for the ovaries. So, if you take all this together, PCOS means that there are many cysts on the ovaries. 

What is the cause of pcos?

How they got there is still a mystery to doctors, but a likely culprit is hormones. The LH levels (the hormone that triggers ovulation) are increased and the levels of FSH (the hormone that makes the ovarian follicles grow and mature) are decreased. Because the FSH levels are not high enough, the ovarian follicles don’t mature as they should and that causes cysts to form. The disruption of the maturing of the ovarian follicles plays a major role in your period.

So, is pcos hereditary?

We’re sorry to say that yes, it is hereditary. It is certain that genetic predisposition and environmental factors play a role. People with a certain genetic predisposition seem to get PCOS faster. Heredity also plays a role. In a family, it is more common for a mother and daughter to have it or sisters, for example. 

what are the symptoms of pcos?

PCOS has a couple of clear symptoms:

• An excess of the hormone testosterone in the body (which we call hyperandrogenism). This can be measured in the blood, but you can also see it in appearance.  In people with PCOS, this can manifest itself in excessive body hair (hirsutism), acne, and hair loss. A doctor can use the Ferriman Gallwey score (mFG) to determine whether the hair is actually excessive (score 4-6). If you have a high score, there is also a chance that the testosterone level in the blood is too high.

• Irregular ovulation or no ovulation (oligo-ovulation or anovulation). This can manifest itself in irregular menstruation (for adults, the guideline says less than 8 times a year or a cycle longer than 35 days) but that does not always have to be the case. You can also have a regular cycle but not a regular ovulation. The doctor can check this by means of a blood test for the hormone progesterone.

• During ultrasound examination, at least 20 egg vesicles are seen in at least one of the ovaries or the volume (≥ 10 ml) of the ovary is enlarged (the number of millimeters can be calculated with the ultrasound).  In addition, there may also be an increased AMH (Anti Mullerian Hormone). 

The new international guideline of October 2023 (Monash 2023) indicates that an adult person must have two of the three characteristics above in order for there to be PCOS. In addition, other causes must be excluded, such as thyroid problems or pregnancy. Because you can have two of the three characteristics to be diagnosed with PCOS, it also means that there is therefore a lot of variation. There are thus many “variations” of PCOS and the symptoms can vary from person to person.

The doctor may make an (internal) ultrasound to view the ovaries and take a blood test to determine the hormone balance. For the blood test, it is important that no oral contraceptive pill is used during the three months prior to it. The contraceptive pill can influence the result. Having excessive body hair (a 'masculine' pattern of hair growth) is often a sign of PCOS. Sometimes it is difficult for a doctor to diagnose because someone shaves, waxes, or lasers themselves. As a result, it is sometimes more difficult to recognize the hair pattern. It can help to take pictures of your hair pattern prior to hair removal so that the doctor can make a good estimate for the m-Ferriman Gallwey score. 

For young people whose first period was less than 8 years ago, but do have the characteristics of PCOS, the advice is to re-examine them for the presence of PCOS as soon as they have been menstruating for 8 years or more. There may be an increased risk, but it is too early to make a diagnosis. 

what are the symptoms associated with pcos?

PCOS is a condition or a syndrome. This means that the condition consists of a collection of symptoms that can occur. No two people are the same, which means PCOS can manifest differently in everyone. A list of symptoms of PCOS.

• Irregular cycle, which means that you don’t ovulate regularly. You can go months without a period in some cases which results in reduced fertility.

• Excessive hair growth on the face (chin and face) and body (lower belly, upper legs, and butt). This is also called hirsutism (hair pattern in a ‘male’ pattern).

• Acne (often on the jawline) or oily skin.

• Thinner hair on your head and hair loss.

• Weight gain that seems to come from just “breathing”.

But there are also a couple of mental health symptoms. For example, think about:

• Feeling down or depressed

• Having a negative self-perception

• Not dealing well with stress

• Eating disorders are more common in people with PCOS, think disrupted eating relationships, bulimia or anorexia nervosa.

How do you notice you have pcos?

The symptoms of PCOS often come to the front during the late teens or early twenties. You’ll notice that your cycle is different from that of your friends or sister. You’ll also start to notice the first symptoms.

What can be done about pcos?

PCOS cannot be solved with medication or treatment. However, you can do a lot yourself about the symptoms which in some cases can disappear. Adjustments to your lifestyle have an obvious effect on the symptoms. Limiting stress, having a healthy and regular nutrition plan, sleeping and exercising well have been proven to be effective. For physical as well as mental symptoms. Cognitive behavioral therapy can help you deal with stress or difficult situations. You can do this form of therapy with any psychologist or psychotherapist who is trained in this. This doesn’t necessarily have to be a therapist with knowledge about PCOS. If you want to get pregnant, drugs that induce ovulation are often prescribed. These can be tablets (clomiphene citrate) or injections (gonadotropin). Obviously, always discuss this with your physician.

If you don’t want to get pregnant (yet) and you have less than three periods a year, then the advice is to take medications occasionally to induce bleeding. This way, you prevent your endometrium from becoming too thick, which increases the risk of endometrial cancer. 

If you suffer from excessive hair growth in places where you’d rather not have it, it is possible to get a laser hair removal treatment. The best result is achieved with laser treatment in combination with hormonal drugs. Our advice is to always go and see an expert, like a dermatologist, if you want a laser treatment. 

Are you infertile with pcos?

No, that doesn’t have to be the case. People with an irregular cycle ovulate less often and therefore they often do have reduced fertility. It can take a little bit longer before you are pregnant and sometimes you need some help in the form of taking hormone tablets or injections. 

Long term effects of pcos

It is important that people with PCOS have regular check-ups with their doctors. Especially if a woman would like to become pregnant because, for example, there is an increased risk of gestational sugar or high blood pressure during pregnancy.

In the long term, people with PCOS have an increased risk of diabetes (four times as often) and high blood pressure (three times as often). It is not clear whether women with PCOS are also more likely to develop cardiovascular diseases (cerebral hemorrhages, heart attacks). If you don't do anything to regulate your menstruation for a long time, i.e. years, with the pill, for example, the risk of endometrial cancer is about six times higher than if you don't have PCOS. However, endometrium cancer is a rare form of cancer and is also associated with smoking and obesity. It is therefore important to keep a close eye on this and to be on time.

In practical terms, this means that it is important to check weight, cholesterol, glucose, and blood pressure regularly, say every year, with your GP and to keep a close eye on this. Stress management, sleep quality, and psychological well-being should also be part of this annual check-up. In this way, the long-term risks can be limited. 

If you have less or no periods, it can be a sign of PCOS. But that doesn't always have to be the case. Your irregular periods can also have other causes.

Do you need more information or contact with fellow sufferers? You can find more information about PCOS online, for example via pcos-uk.org.uk

Do you have irregular periods? Learn more about what this means here.