Polycystic ovary syndrome is considered to be the most frequent endocrinological condition in women in reproductive age and, consequently, the cause of infertility. The disease is multivariate but most recent research provides us with more information about it, and the machines we use in diagnosis (ultrasound scanners, for instance) are becoming more precise, and help us see more. Today we come to you with a story about how diverse and complicated PCOS is.
8 min. reading time • Text: lek. Karolina Rasoul-Pelińska
Illustration: Jarek Danilenko
Polycystic ovary syndrome (PCOS) incites emotions and controversies both in patients and doctors. On the latter’s end it’s because each year we’re given new guidelines or extra tips, hence the differences in dealing with the syndrome from one specialist to another. On the patient’s side the emotions are prompted by ovulatory dysfunctions and, what follows, problems with menstruation or, to make matters worse, getting pregnant. On the other hand, PCOS often influences a woman’s looks: hair in places where it shouldn’t be or acne. PCOS is greatly overdiagnosed (i.e. women are diagnosed with the syndrome when they actually don’t suffer from it). “You have polycystic ovaries”, women hear during an ultrasound scan, very often — prematurely. Usually, the issue is not as unambiguous because PCOM (polycystic ovary morphology) is not synonymous to PCOS.
The syndrome was first described in 1935 by Stein and Leventhal, from whom the syndrome took its initial name. The chief symptoms are the aforementioned menstruation problems, signs of excess of male sex hormones (androgen excess), seborrhoeic dermatitis, or excess hair growth (hirsutism). Often, obesity comes into the picture. In the past, all patients with PCOS were put into one box and treated in the same way. Thankfully, science made some serious strides and now we know about the existence of three main phenotypes which are treated differently, but we’ll get to them later. The problem with PCOS is that it afflicts women not only in reproductive age. Postmenopause women are more susceptible to type 2 diabetes, cardiovascular diseases, endometrial hyperplasia, or endometrial cancer.
There are many theories: some claim that it’s happening already in prenatal development, others — in puberty. One thing we know for certain — it’s long before first symptoms. The syndrome stems from genetic, as well as environmental factors. It’s tied to, among other things, uterine congenital anomalies, low birthweight, and insulin resistance. In daughters whose mothers suffered from PCOS, there is a higher risk of being afflicted with the syndrome, although the search for the gene responsible continues. Recently, much attention is devoted to the environmental factors, such as the substances used in the production of plastic, mostly bisphenol A, which is to be found in food and cosmetics packaging, bottles, pipes etc., and advanced glycation-end products (AGE). The latest are by-products of digestion and if there aren’t too many of them, the organism is able to eliminate them itself. However, if they build up in excess, they accumulate in tissues and may cause various inflammations leading to diseases of civilisation, i.e. cardiovascular or osteoarticular diseases, and diabetes. How to avoid AGEs? You’ve probably heard it all before: eat as little processed food as possible and refrain from frying things. Additionally, AGEs are present in tobacco smoke. The aforementioned substances are significant factors related to the progress of our civilisation. Craving for more? Click the links below.
Depending on the guidelines we adopt, PCOS occurs in 10-15% of women, but in some sources the number goes up to 25%. The discrepancy results from the criteria on which we rely when diagnosing the syndrome. Unfortunately, as is often the case in the medical business, nothing is black and white, and the boundaries are quite fuzzy.
The fundamental criteria in diagnosing PCOS are the Rotterdam criteria from 2003, proposed by ESHRE (European Society of Human Reproductive Medicine) and ASRM (American Society for Reproductive Medicine). The diagnosis requires a patient to present two out of three symptoms: oligo-ovulation (rare ovulations) or anovulation (lack thereof), clinical symptoms of hyperandrogenism or hyperandrogenemia, or polycystic ovaries visible in an ultrasound scan (at least 12 follicles and the ovarian volume ≥ 10 mL). In 2018, a fresh dose of knowledge was provided by the International PCOS Network. The number of “required” follicles visible in an ultrasound scan has risen to at least 20 and an extra criterion was added — there must be no dominant follicle. The situation is a bit more complicated for younger patients — similarly as in the case of a number of diseases, the treatment differs here as well. In the first year after the first menstruation, up to 85% of cycles are anovulatory (for comparison: in the third year it’s 59%). Naturally, the greater the irregularity, the greater the likelihood of dysfunctions in reproductive age. Yet, it’s still just a likelihood.
The factors that may herald PCOS in young women are: early menstruation or maturing, low birthweight, and obesity. On suspicion of PCOS in obese girls the first recommendation should always be to lose weight — reducing weight by 5% already improves the general condition of the patient. It’s important, though, to remember that each organism needs time to “adjust” to the new conditions, in this case — menstruation. In the 2018 guidelines this time was extended to 8 years. This means that only after 8 years since our first period should we diagnose PCOS. We should monitor the patient for at least 2 years prior to diagnosis, of course.
Apart from examining the ovaries during an ultrasound scan, it’s necessary to carry out hormone tests. In this case, we either measure the levels of free testosterone (not bound to any proteins) or we determine FAI (free androgen index) by dividing the total testosterone level by the SHBG (sex hormone binding globulin). Testosterone levels A-okay? Let’s move on then — we measure the remaining androgenes. We measure a bunch of other sex hormones and often also glucose or cholesterol levels etc. Alright! You’re still with me? I’m sorry if I’ve bored you to death but I only wanted to show you that the entire process is complicated and one appointment is not enough to diagnose PCOS. This is why I urge you to be patient and don’t be angry with your doctors if they give you countless referrals for tests without filling you in on the details.
I promised you that I’ll get back to the phenotypes (groups with particular features) connected to PCOS. The most common is classic PCOS, i.e. an obese patient with insulin resistance and hyperandrogenism. Unfortunately, abdominal obesity is related not only to fat accumulation in the subcutaneous tissue but also in the muscles and liver (known as visceral adipose tissue) which bears further consequences. It afflicts not “only” your menstruation cycle but also impacts the functioning of the entire organism: from lipid disorders, through insulin resistance, to cardiovascular diseases and postmenopause endometrial cancer. Patients with classic PCOS must lose weight (a reducing diet, physical exercises, sometimes pharmacological treatment — metformin) which will surely be good for their overall health. Unfortunately, easier said than done, as for such patients, due to hormonal abnormalities, losing weight is considerably more difficult than for the rest of us.
The second phenotype is the hyperandrogenic PCOS and is characterised by, as the name suggests, hyperandrogenism, i.e. the excess of male sex hormones and the accompanying symptoms (they may not appear concurrently) which may include: skin problems (mainly seborrhoeic dermatitis, acne), excessive hair growth, or pattern hair loss (rarely). It’s important to remember that the increase of male sex hormones may accompany many adrenal dysfunctions or tumors, which is why your doctor should first exclude those options. The treatment is usually a combined pill. The issue is much more complicated than it may seem but I’m not here to overwhelm you with the details — your doctor will take good care of you.
The last phenotype is the reproductive one, meaning: essentially everything’s fine, except the fact that you can’t get pregnant. Testosterone levels are normal, you present no symptoms, you’re slim, no acne, but your menstruation cycles are irregular. The aim of the treatment in this case is to restore ovulation, thus the drugs prescribed by gynaecologists will directly influence your hypothalamic-pituitary-ovarian axis. Pharmacological treatment is quite complicated and requires constant supervision, and sometimes surgery.
So as you can see, PCOS may be diagnosed in overweight girls with excessive hair growth, as well as in slim women with beautiful skin. Obviously, it’s a huge oversimplification but I wanted to draw your attention to the fact that the syndrome is extremely complex and diverse. Remember that there are no clear-cut boundaries in patients — we always talk about a dominant phenotype. Taking the abundance of symptoms into account, the most significant thing is a personalised therapy, as we won’t be treating patient 1 in the same way as patient 2 because their individual problems may vary substantially. So what is the main cause of PCOS? The thing is that we haven’t fully understood PCOS yet and are still just treating its symptoms. Which is why it’s crucial to pick a doctor whom you trust to take care of all your problems, and whose recommendations you’ll listen to. The worst thing you can do is continually change doctors and not give them a chance to fully diagnose you. Far be it from me to make you stick to the first one you go to but remember that the entire diagnostic-therapeutic process will begin anew with each doctor. And yes, any gynaecologist can treat PCOS, but there are also reproductive endocrinologists. So if you’ve been bouncing off from door to door to no avail, you can always choose a double specialist ;)
1. International evidence-based guideline for the assessment and management of Polycystic Ovary Syndrome [LINK]
2. The polycystic ovary syndrome: a position statement from the Polish Society of Endocrinology, the Polish Society of Gynaecologists and Obstetricians, and the Polish Society of Gynaecological Endocrinology [LINK]
3. Sharma, C., Kaur, A., Thind, S. S., Singh, B., & Raina, S. (2015). Advanced glycation End-products (AGEs): an emerging concern for processed food industries. Journal of food science and technology, 52(12), s. 7561–7576.
4. Takeuchi, T., Tsutsumi, O., Ikezuki, Y., Takai, Y., & Taketani, Y. (2004). Positive relationship between androgen and the endocrine disruptor, bisphenol A, in normal women and women with ovarian dysfunction. Endocrine journal, 51(2), 165–169.
Karolina works at a clinic specialising in gynaecological oncology and is on duty at the labour ward. Additionally, she’s an active member of Klub Młodych Ginekologów Onkologów (The Club of Young Gynaecologists Oncologists). In her PhD, she studies metastases in endometrial cancer. She chose gynaecology because she wanted to take care of women who often take care of themselves only after they’re done with everything else. She works 11 months a year so that she can jump on a plane and venture into the jungle. She’s our expert on intimate health.
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