Before you start reading: If you've just been diagnosed with polycystic ovary syndrome (PCOS), you might be feeling surprised, confused, overwhelmed with various information, and catastrophic scenarios. The good news is, you don't need to become an expert on every detail of PCOS. You just need to have a sense of which areas of your health and body functioning PCOS can affect. The next step is to seek out professionals who can help you manage the area you currently perceive as problematic. For women with PCOS, a key factor is a healthy lifestyle and achieving/maintaining a healthy weight. So, the second good news is that you can work on improving your life with PCOS yourself. For many patients, this diagnosis pushes them towards better self-care. And another thing: this diagnosis isn't going anywhere, you'll learn to live with it every day. Therefore, it's not necessary to find out, understand, and absorb everything all at once..
What it is: PCOS is a somewhat mysterious condition that has been intensively researched in recent years. We don't know exactly what causes it. The wide range of symptoms means that there's no "typical woman with PCOS." According to the WHO, it's the most common hormonal disorder in women of reproductive age, and up to 70% of patients will never learn about their diagnosis. While this condition cannot be cured, its symptoms and impacts can be alleviated to ensure a higher quality of life for patients.
Ovaries in healthy women: Ovaries are very special organs as they belong to two organ systems: the reproductive and hormonal systems. From a reproductive standpoint, their task is to produce eggs and subsequently ensure their maturation and release. Hormonally, estrogen is produced in the ovaries (it prepares the uterine lining for the potential arrival of an embryo) as well as progesterone, which prepares the uterine environment and is necessary for maintaining pregnancy in the 1st trimester (later, progesterone is produced by the placenta). Both functions of the ovary are closely interconnected. The ovary, as a hormone-producing organ, does not function independently but is part of the hypothalamus-pituitary-ovary hormonal pathway. Furthermore, its functions are also influenced by factors like insulin, a hormone produced by the pancreas. This is just to illustrate the complexity of hormonal pathways in our bodies, which interact with each other.
Ovaries in women with PCOS: From a reproductive standpoint, PCOS can lead to situations where the egg in the ovary does not release. The extent of this symptom can vary over time, with women experiencing alternating ovulatory and anovulatory cycles, or there may be menstrual disruptions for several months. From a hormonal perspective, women with PCOS may have higher levels of male sex hormones in their blood, simplifying it, let's call it testosterone. Testosterone is produced in women's ovaries (and also in the adrenal glands, for completeness). However, under normal circumstances, it is subsequently converted into estrogen, the female sex hormone. Due to a dysfunction involving multiple hormones in women with PCOS, this conversion in women occurs to a lesser extent, leading to increased testosterone levels (generally androgens) in the blood of women, and in some of these women, observable changes associated with higher androgen levels will subsequently develop.
What a woman may notice: What a woman with PCOS may notice are significant irregularities in the menstrual cycle. Another sign of PCOS is manifestations of hyperandrogenism, i.e., an excess of male sex hormones, such as excessive hair growth in areas typical of men, hair loss (commonly described as "male pattern" in English, imagine hair loss on the crown, typical for men), and fat deposition in the abdominal area (while for women, fat deposition is more typical in the hips and buttocks).
What a doctor will find: In women with PCOS, a typical polycystic appearance may be visible when ovaries are imaged via ultrasound. The ovary is enlarged and filled with dark cavities. When examining the hormonal profile of women with PCOS, a doctor may find elevated levels of male sex hormones (and a variety of other hormonal changes).
WHY IS THERE SO MUCH FUSS ABOUT IT? We often write that something may be present in women with PCOS, the doctor may find this or that. The reason for this is that women with PCOS may not have all visible and detectable manifestations through imaging techniques/laboratory tests.
When a woman typically seeks a doctor:
Irregularity and unpredictability of the menstrual cycle
Difficulty getting pregnant
Physical deviations associated with excess male sex hormones
Which specialist to visit: So far, we don't have a specialist directly for PCOS, so individual manifestations fall into various medical fields. Typically, we address our menstrual cycle and infertility issues first with the attending gynecologist. For physical deviations, you can consult a general practitioner, who will likely recommend an endocrinologist after examining your hormonal profile. If you're unsure, your general practitioner should always serve as a guide to other specialists.
How a PCOS diagnosis is made:
Over time, the requirements for what symptoms a woman must have to receive this diagnosis have evolved. Currently, there is agreement on the so-called Rotterdam criteria, which are as follows:
I have PCOS if I have at least 2 of the following symptoms:
A1) Elevated levels of androgens in the blood
A2) External manifestations of hyperandrogenism (excessive hair growth, etc.)*
B) Irregular menstrual cycle, oligo/anovulation, amenorrhea
C) Polycystic appearance of the ovaries on sonographic imaging
*For external manifestations of hyperandrogenism, the finding must align with the laboratory finding of elevated levels of androgens in the blood. If symptom A1 and A2 are present, they count as 1.
Oligo-ovulation: fewer than 8 ovulatory cycles in 12 months
Anovulation: cycles without ovulation
Amenorrhea: Absence of menstrual bleeding
From these criteria, we can have a woman with PCOS who has a normal level of male sex hormones, has an irregular cycle, and has a polycystic appearance of the ovaries. Another woman with PCOS may have elevated levels of androgens in the blood or external manifestations of hyperandrogenism, her ovaries on imaging may show a typical polycystic appearance, but this woman menstruates regularly, ovulates in her cycles, and can conceive without difficulty. We can also have a woman who exhibits all diagnostic criteria and a woman who has elevated levels of androgens in the blood along with an irregular cycle, but her ovaries appear normal on imaging.
Why do you have PCOS? We don't know exactly. Genes have already been described that are presumed to be associated with the development of PCOS, so the role of heredity is being studied. It is also likely that hormonal pollution in the environment, especially in drinking water, plays a role.
Overweight/obesity and PCOS: Most women with PCOS have a BMI in the overweight/obesity range. In these women, PCOS often develops in conjunction with weight gain and associated insulin resistance. For these women, it is absolutely crucial to achieve weight loss and subsequently maintain it (which alone, without further interventions, can lead to the restoration of proper ovarian function and suppression of PCOS symptoms).
You have PCOS. What now? And here it is, no universal guide. It depends on what troubles you at the moment, whether you are trying to conceive, whether you are overweight or obese, which exacerbates the situation with PCOS, and it's always appropriate to address this situation through lifestyle changes and possibly medication. Perhaps you are troubled by appearance associated with elevated levels of androgens.
PCOS throughout a woman's life
Puberty: You probably don't know about your diagnosis here yet. It's almost impossible to diagnose PCOS during puberty according to diagnostic criteria. Why is that? What is later considered clear diagnostic criteria is actually a common phenomenon a few years after the onset of menstruation in girls. Menstrual cycles are initially irregular and stabilize over several years. The hormonal storms of puberty, including increased levels of androgens in pubertal girls, can also cause the ovaries of young girls to appear polycystic on ultrasound without anything being wrong. There is even a recommendation that the diagnosis of PCOS should not rely on confirmation via ultrasound until 8 years after the onset of menstruation. Here we see why even girls with chronically irregular cycles do not receive a diagnosis of PCOS at a gynecological examination. Very irregular cycles are often "normalized" using hormonal contraception, which also masks any manifestations of hyperandrogenism.
From puberty to menopause: Many women in this group are planning to start a family. Those who have been using hormonal contraception until now (often for years since puberty) are waiting for their menstrual cycle to resume, which may either not occur or occur temporarily. Then there are women who didn't use hormonal contraception, had a very irregular cycle with gaps, but until considering having children, it wasn't actually a problem. The period of planning one's own reproduction is most often the period when a woman learns about her diagnosis so she can subsequently choose a solution acceptable to her (adjustment of physical activity and diet, efforts to adjust the body's hormonal and menstrual cycle status using herbal preparations, methods of assisted reproduction). If a woman knows her diagnosis and is not trying to conceive, solutions may also include lifestyle adjustments, hormonal yoga exercises, possibly the use of combined hormonal contraception (not only for contraceptive purposes but also to ensure regular bleeding) or short-term regular use of progestogens (which ensure bleeding but do not act as contraceptives). Furthermore, PCOS alters blood properties, increasing the likelihood of heart and vascular diseases. Obese women have an increased risk of type 2 diabetes, and pregnant PCOS patients have a higher risk of gestational diabetes.
Why it's good to menstruate: If the menstrual cycle functions properly, the uterine lining is shed regularly, which, under the influence of estrogen in the following cycle, regrows, and the situation repeats. If the cycle doesn't function properly, the uterine lining may grow without being shed. This condition is called endometrial hyperplasia and can rarely develop into endometrial carcinoma.
PCOS and fertility: Fertility in women with PCOS is affected on multiple levels. Besides cycles without ovulation, reduced egg quality and inadequate corpus luteum function are described. Spontaneous pregnancy is possible in ovulating women with PCOS. In women with anovulation, assisted reproduction techniques can be utilized. It remains true here that the chances of conception, carrying to term, and delivering a healthy baby decrease with age.
Postmenopausal PCOS: Postmenopausal women no longer exhibit typical PCOS symptoms because the ovaries cease to be hormonally and reproductively active. However, the higher risk of heart and vascular diseases persists, so they should focus on regular check-ups and influencing other risk factors (smoking, alcohol, diet, exercise, weight).
In conclusion: It will take some time before you accept your diagnosis. Fortunately, besides information, it's now possible to find groups that bring together patients where women can find support and inspiration. May you succeed in discovering what helps your body live well, even with PCOS.
Sources (though not exhaustive):
PCOS in adolescent girls: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9918268/
Diagnosis:
WHO
Mayo clinic
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