Polycystic Ovarian Syndrome, or PCOS, has gained traction in the wellness space in the last 5 years as there has been more and more focus on “balancing your hormones." PCOS is a condition that impacts many people but it can be tricky to get a diagnosis. We often see clients who are unsure if they have PCOS or another hormonal issue going on. In her book This is Your Brain on Birth Control, Sarah Sarah E. Hill says that “Taking control of our reproductive health is taking control of our lives.” (Hill, 2023). The question is…How can we take control of something we do not fully understand?
I am so glad you asked! There are several ways to gain more understanding about PCOS and start exploring whether or not it may be something you are experiencing. For those who menstruate, using an app or paper tracking tools can illuminate irregularities in your cycle from symptoms to length. My favorite apps are Natural Cycles and Stardust (not sponsored, but Natural Cycles corporate if for some reason you’re reading this 👀). Another means of regaining control over reproductive health is doing research. Consulting your healthcare professional, reading reputable sources online, and chatting with friends may all be the means of conducting your research. Controlled and anecdotal research both have value in informed consensual health choices. When it comes to your body, the goal is always to feel as if you are in the driver’s seat. Eating disorders and PCOS may make a person feel as if their own body and mind have become foreign, so gaining knowledge can really be powerful.
So, what exactly is PCOS?
PCOS stands for Polycystic Ovarian Syndrome. A “syndrome,” by definition, is an umbrella term for a cluster of symptoms. The irony of PCOS is that you can have non-cystic ovaries and meet the other criteria for a recognized type of PCOS.
In 2003, a Rotterdam consensus workshop group stated, “polycystic ovarian syndrome (PCOS) is defined by the presence of two of three of the following criteria: oligo‐anovulation, hyperandrogenism and polycystic ovaries (≥ 12 follicles measuring 2‐9 mm in diameter and/or an ovarian volume > 10 mL in at least one ovary).” (Smet, M. E., & McLennan, A., 2018).
To recap what you just read, you must check 2 of the 3 following boxes for a PCOS diagnosis: high blood androgen (typically testosterone) levels, ovaries with more than one (poly) cyst, and irregular menstrual cycles (oligo meaning few). In 2012, updated PCOS criteria from the National Institute of Health panel workshop further broke down the syndrome into four “phenotypes” (Durkin, 2018). These four phenotypes are called “Phenotype A, Phenotype B, Phenotype C, and Phenotype D.” The variations between these phenotypes include the presence of polycystic ovaries, hyperandrogenism, and ovulatory dysfunction (Smet, M. E., & McLennan, A., 2018). For more information on the specifics of each phenotype, check out the graphic below.
Figure 1 (Mancini, A., Bruno, C., Vergani, E., d'Abate, C., Giacchi, E., & Silvestrini, A., 2021).
Outside of the diagnostic criteria, people with PCOS may notice other pesky symptoms. Acne, unwanted hair growth, scalp hair loss, skin tags, painful menstruation cramps, and mood swings-just to name a few. Through lifestyle changes and supplement/medication management (if needed), PCOS patients (aka “Cysters”) can feel confident in their health again – no restriction or fad diet required!
As you can see in this figure, PCOS is often associated with other metabolic conditions like insulin resistance and increased diabetes risk. You can see, though, that this is not true of everyone with PCOS which speaks to the need for testing and individualized care.
The challenges of getting diagnosed
Many people are unaware that they are suffering from PCOS-related symptoms (WHO, 2023) in the midst of their stressful, 9-5 lives. According to the World Health Organization, “Up to 70% of affected women remain undiagnosed worldwide” (WHO, 2023). In my latest blog I elaborated on hormonal changes that cisgender females may experience in their mid-20s. Polycystic ovarian syndrome falls outside your typical hormonal changes during that time but the onset years are fairly similar. According to the Mayo Clinic, many teenagers and young adults in their twenties notice the onset of PCOS during their “reproductive years” (Mayo Clinic, n.d.). It can be tough for folks to get a PCOS diagnosis. One study showed that it can take over 2 years and multiple doctor visits. (Durkin, 2018). PCOS impacts each person differently with various physical, metabolic, and emotional symptoms which makes it hard to diagnose even if someone has access to medical care.
If you’re still reading, thank you for staying with me through all the research jargon! Like I said, information can be power so I hope this was a helpful learning tool. In my next blog post, I will dive deep into the relationship between PCOS & EDs.
Stay tuned for Part 2!
References:
Durkin, M. (2018). Demystifying the diagnosis of PCOS. American College of Physicians. https://immattersacp.org/archives/2018/11/demystifying-the-diagnosis-of-pcos.htm
Hill, S. E. (2023). This is your brain on birth control: How the pill changes everything. Avery.
Mancini, A., Bruno, C., Vergani, E., d'Abate, C., Giacchi, E., & Silvestrini, A. (2021). Oxidative Stress and Low-Grade Inflammation in Polycystic Ovary Syndrome: Controversies and New Insights. International journal of molecular sciences, 22(4), 1667. https://doi.org/10.3390/ijms22041667
Mayo Clinic. (n.d.). Polycystic ovary syndrome (PCOS). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/pcos/symptoms-causes/syc-20353439
Smet, M. E., & McLennan, A. (2018). Rotterdam criteria, the end. Australasian journal of ultrasound in medicine, 21(2), 59–60. https://doi.org/10.1002/ajum.12096
World Health Organization. (2023). “Polycystic ovary syndrome”. https://www.who.int/news-room/fact-sheets/detail/polycystic-ovary-syndrome#:~:text=Up%20to%2070%25%20of%20affected,a%20leading%20cause%20of%20infertility
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