September is PCOS Awareness Month, an initiative that aims to raise awareness of Polycystic Ovarian Syndrome, a condition affecting 6% to 12% (as many as 5 million) of US women of reproductive age and up to 20% of worldwide women of reproductive age. Its prevalence appears to be relatively uniform around the world. If you’re trying to get pregnant in the near future and you have been diagnosed with PCOS (or you just suspect it), this is what you should know.
What is Polycystic Ovarian Syndrome?
PCOS is complicated - even the name leaves people confused. Having Polycystic Ovarian Syndrome doesn’t necessarily mean that you have cysts on your ovaries as the name suggests. PCOS was first described in 1935 when two US gynecologists associated the presence of multiple small ovarian cysts with anovulation. But we’ve learned a few things about PCOS since then.
Those small cysts are not really cysts, but actually are the small so called antral follicles that should be present in all young reproductive age women. The difference is that patients with polycystic-looking ovaries just have many more of those follicles (more below). Most women with PCOS do have polycystic-appearing ovaries, but some may not, which is why PCOS should not be diagnosed or ruled out based on the ultrasound alone.
How is PCOS diagnosed?
PCOS is a hormonal condition characterized by few symptoms. The diagnostic criteria are clearly defined by an international consensus and are the following:
anovulation (irregular periods without ovulation) and/or
excess of androgen hormones when all other causes of excess can be ruled out, which can be diagnosed clinically by excess facial and/or body hair, acne, male-pattern balding, or with the elevated androgen levels in the blood, and/or
If you meet two out of three criteria, you are usually diagnosed with PCOS. of note, androgens are the group of sex hormones that give men ‘male’ characteristics. It’s normal for women to have some of these male hormones (we need them to produce estrogen!), but an excess in women can cause some of the symptoms of PCOS outlined above. It is worth mentioning that when we talk about elevated levels of androgens in women, the levels are still below the male levels!
PCOS symptoms and associated health issues
The main symptom of PCOS is irregular or missed periods which are typical of cycles without ovulation (the so called anovulatory cycles). Other symptoms can include:
Excessive unwanted body and facial hair
Hair loss or thinning, mainly following male pattern baldness (at the front)
Skin tags and dark or thick patches of skin primarily in the neck, armpit and groin areas (acanthosis nigricans)
Studies have shown significant links between PCOS and other health issues that women with PCOS are likely to experience - though for some of these conditions it has not been clearly established yet if these issues cause PCOS or are caused by PCOS:
Anxiety and Depression
Pre-diabetes or diabetes
High blood pressure
How to move forward with a PCOS diagnosis
Unfortunately, there are no known complete cures for PCOS, however, medication and treatment plans can help to ease symptoms, prevent other closely related health issues, and help women regain quality of life. Management is closely related to a woman's goals at a given point in life.
Getting the right diagnosis and information on PCOS is also complicated and can often be a long and challenging road. It is highly advisable to talk to a specialist, confirm if you indeed have PCOS, and determine which of the four types of PCOS you have. The management plan may be different and should be discussed with the provider.
In general, PCOS can be broken down into four different phenotypes of PCOS based on how the diagnosis of PCOS was made:
Phenotype A (also known as "full PCOS" or "classic PCOS") includes biochemical or clinical hyperandrogenism, oligoovulation, and polycystic ovarian morphology
Phenotype B (also known as "classic PCOS") includes hyperandrogenism and oligo anovulation
Phenotype C (also known as "ovulatory PCOS") includes hyperandrogenism and polycystic ovarian morphology
Phenotype D (also known as "non-hyperandrogenic PCOS") includes oligo anovulation and polycystic ovarian morphology
About half of women with PCOS have insulin resistance, with elevated insulin levels. . If your insulin is high, then high insulin is driving the high androgens. Treatment includes changing up your exercise routine and diet (cutting carbohydrates) and possibly taking supplements such as magnesium and inositol. Metformin is often prescribed.
About 60% of women with PCOS are obese, and it is unclear if obesity is cause or result of PCOS. For obvious reasons, obesity can worsen insulin resistance,drive insulin levels higher, increase the severity of ovulatory and menstrual dysfunction. It is also associated with worse pregnancy outcomes, and later in life, is associated with an increasing prevalence of metabolic syndrome, glucose intolerance (pre-diabetes), cardiovascular risk factors, and sleep apnea. This is important information to know and keep in mind, because there are measures you can take and try to prevent all these!
How to get pregnant with PCOS
When we ran our study at the beginning of 2022, 20% of our overall study participants said to have been diagnosed with PCOS; 40% of them ultimately got pregnant.
On the other hand, almost 52% of our study participants who struggled with fertility mentioned PCOS as the primary cause of it. While PCOS is not a permanent sentence of infertility, it often causes irregular or anovulatory (without ovulation) cycles which makes it harder for women to track ovulation and maximize their chances of conceiving. Indeed, 65% of our study participants who successfully conceived knew when they ovulated.
A PCOS diagnosis can make conception feel impossible, especially if you’re actively trying for a baby or plan to start trying soon. It’s important to first grant yourself grace and do your best with patience as you take some of the following steps toward managing your symptoms and then conceiving with PCOS. And remember, most women with PCOS will go on to get pregnant!
Even more, if you don't want to get pregnant, contraception use is usually recommended (because you can get pregnant!).
How to improve your PCOS life?
Symptoms can be managed by making some lifestyle adjustments.
Add exercises to your routine, keep your BMI under control and reserve space for meditation
Implement a well balanced diet with plenty of fibers, whole grains, fatty acids and anti-inflammatory foods
Track your cycles closely with Fertility Awareness Methods or with fertility tracking devices
Some Medications can be prescribed to promote egg quality and rebalance hormonal levels.
Fertility procedures, sometimes very simple
Always talk to your doctor to identify the solution that works best for you and your body.
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If you’re navigating a PCOS diagnosis, remember: you're not alone and you can make changes to improve your symptoms and quality of life. There are more resources than ever before and countless new trials and studies continue to help bring further clarity to a complex condition.
Lusine Aghajanova, M.D. Ph.D., is a Fertility specialist, Obstetrician and Gynecologist (OB-GYN), Stanford School of Medicine.