Hi everyone! I’m back with the next chapter of this series: demystifying PCOS.
The characteristics of polycystic ovary syndrome (PCOS) that make it a diagnosis I love to help my patients manage are also what make it so frustrating to experience: myths and misconceptions abound, there are many different aspects to consider, and it can look so different from woman to woman. These factors also contribute to the unfortunate reality that it sometimes takes women multiple years and physicians before they finally get their PCOS diagnosis, with frustration and anxiety increasing along the way.
To help every reader feel more informed about PCOS, this post is just the beginning of a series of deep dive articles into everything about PCOS!
Let’s start with a quick overview of diagnosis. Drs. Irving Stein and Michael Leventhal first described PCOS in 1935, but the first modern set of diagnostic criteria, now known as the National Institutes of Health (NIH) criteria, were defined in 1990 and involved irregular or absent ovulation with symptoms or elevated blood levels of the androgen hormones. Fast forwarding to 2003, an international conference established the Rotterdam criteria, which requires at least two out of three criteria – the original NIH criteria and/or “polycystic-appearing” ovaries on ultrasound.
Though women with PCOS are predisposed to developing certain types of ovarian cysts, having a cyst is not part of the diagnosis. Neither are FSH or LH levels or ratios, or AMH levels (we’ll get to these hormone related topics in another post). Other explanations, like thyroid disease and more, must also be ruled out before we can finalize a PCOS diagnosis.
In clinical use, we typically use Rotterdam criteria because it casts the widest net, but PCOS can present with a variety of associated symptoms. I love the PCOSQ (PCOS-related quality of life) questionnaire because it highlights the most common domains of concern that we should address for all women with PCOS - 1) excessive hair growth (known as hirsutism), 2) irregular bleeding, 3) infertility, 4) weight management, and 5) mental and emotional health - with the understanding that the relative importance of these concerns will likely shift over a woman’s life. Each of these domains opens the door to discussing a part of how PCOS works. Let’s take them each in turn.
Hirsutism is a sign of elevated androgens, a topic I promise we will circle back to in future posts! The most well-known androgen is testosterone, and though we often think of these as “guy hormones,” we all have them, just typically at lower levels. When androgens become elevated, they can cause excess hair growth on the face and/or body and hair growth in places women don’t always have hair (chin, sideburns, tummy, lower back, between the breasts and so on), as well as acne and even male-pattern baldness. So, we talk about these symptoms and check androgen levels to ensure they’re not high enough to suggest an alternative diagnosis.
Irregular bleeding is at the heart of PCOS. It happens because the signal from the brain to the ovary to push an egg to mature (inside of a fluid-filled sac, called a follicle) gets lost in translation. An absent hormonal pattern of regular ovulation can cause other potential problems: 1) no period (potentially allowing pre-cancerous and cancerous cells to build up in the endometrial lining), 2) unpredictable periods, 3) extremely heavy periods, and so on. Watch my video on the menstrual cycle to learn more!
When we do an ultrasound, we will often see that the number of follicles present is far more than might be average for that woman’s age, or that the ovaries are larger than usual. These are the criteria that define a “polycystic” ovary…again, nothing to do with a cyst! (It’s a bad name, we know). So, here we talk about how to track periods, what’s normal, how to protect the uterus from cancer and options for regulating bleeding.
This absent or highly unpredictable ovulation results in infertility, but know that this is one of the most treatable parts of PCOS, especially if you’re in your mid-30s or younger! What breaks my heart is two big communication gaps I have seen time and time again – a girl being told at a young age that she’ll never get pregnant because of PCOS (seriously, people are out there telling young women this, and it is totally false!), or me having to tell a couple who’s been trying for pregnancy that likely they never had a chance that whole time because of absent ovulation. So, here we talk about “ovulation induction,” how we get an egg to actually grow. Rest assured, this does not require IVF or highly expensive treatment to start!
PCOS can also be associated with a risk for cardiometabolic disease, primarily through insulin resistance. Insulin is the hormone that deals with the sugar we get in our diet – so when we become resistant to its action, we can quickly gain weight (especially tummy weight!), develop pre-diabetes and eventually type 2 diabetes, heart disease and more. So, an important discussion of long-term lifestyle comes into play here, along with checking sugar levels. I have unfortunately diagnosed full-on diabetes in multiple 20-somethings with PCOS, so in many ways, this part of the conversation is the most critical to long-term health.
Mental and Emotional Health
Finally, a number of great papers over the past few years have highlighted that the risk of anxiety and depression is 2-5 times higher in women with PCOS. Mental and emotional health is such an important part of the discussion. If you have PCOS and have felt down about the diagnosis, know that it is a totally normal feeling and there are many ways to address this side of things. Please reach out and get your support network in place!
Diagnosing PCOS at the Right Time
If we think about it, irregular cycles, acne and ovaries full of eggs sound familiar…like puberty, right? As such, there has been a lot of discussion around how to diagnose PCOS in adolescents. In some cases, teens with serious symptoms are told they are just experiencing adolescence, so there’s a missed opportunity to identify a possible PCOS diagnosis. On the other hand, we don’t want to mislabel a young woman too early. So how do I balance this?
When I’m working with a teenager, we run through a few facts. Periods that stay irregular for 2+ years after the first period are quite likely to stay irregular. Girls with persistently irregular cycles at age 16 are at least 2-fold more likely to have irregular cycles at 26. So, we focus on tracking cycles, managing symptoms, and identifying any early signs of insulin resistance or unhealthy lifestyles. We address normal concerns about irregular bleeding, acne and hair management, and mood. I tell them we will finalize the diagnosis at or around 8 years after the first period, and I provide reassurance that at this early age, much can be done to prevent the side effects of PCOS.
Sometimes we’ll also take a look at the ovaries with an abdominal ultrasound (the kind we do in pregnancy). The message here is all about reducing fertility stress and… you guessed it, reproductive empowerment! Once you know what is likely going on, we can work as a team to make changes. The young body is extremely resilient and amenable to changes if we put the work in!
PCOS in South Asian Communities
I want to end this first piece on PCOS by sharing why this topic is of particular importance to South Asian women. PCOS is highly prevalent in our community and in studies in South Asia and one I did right here in the US, nearly half of South Asian American women presenting for fertility care are coming in because of PCOS! This high prevalence overlaps with the generally poor cardiometabolic genes we have, and a culture that often does not prioritize physical health and stigmatizes discussion around reproductive health and regular gynecologic care. Our discussion of a healthy lifestyle will certainly delve into more of these cultural aspects, but we want you to know that you are not alone in this, and we will keep unraveling the complexities of PCOS together!
I really hope by now you’re feeling much more confident about understanding the ways in which PCOS can show up, and what considerations we need to discuss. We will definitely share more about the pearls to maintaining a healthy weight, the role of birth control, metformin, supplements and other complementary approaches in future posts. Tell us which parts are most troublesome to you, and we’ll tackle them all in order!
A few words about PCOS from Dr. Rashmi Kudesia:
Dr. Kudesia is Board-Certified in Reproductive Endocrinology and Infertility, practicing at CCRM Fertility Houston in Texas. She is also an Assistant Clinical Professor at Houston Methodist Hospital, and has been named a "Super Doctors Rising Star” for the past three years. Dr. Kudesia is a Fellow of the American College of Obstetricians and Gynecologists, and holds leadership roles within the American Society for Reproductive Medicine, Society for Reproductive Endocrinology and Infertility, Androgen Excess & Polycystic Ovary Syndrome Society, and American Medical Association.