In honor of PCOS Awareness Month, we have put together a short guide to understanding who PCOS affects, the scope of its knock-on effects, and how you can help amplify awareness of PCOS so that more people with this condition get the medical care they deserve. The CDC estimates that 1 in 10 women of reproductive age have PCOS: that means it is extremely likely that you, or someone you know, is living with PCOS. Given that this is both a reproductive and metabolic health condition with physical and psychological components, the importance of being diagnosed, if you have PCOS, and accessing easy, comprehensible resources cannot be understated.
Let’s dive into the ways we can all better our self-education and self-advocacy, while amplifying the voices of leaders in this space who strive to make PCOS easier to live with.
Who does PCOS affect?
The CDC estimates 6% to 12% of US women of reproductive age are living with PCOS, but the CDC warns that even though this is a reproductive condition, PCOS’ impact on one’s long-term health extends beyond this time period and into menopause, thanks to its knock-on effects (which we’ll touch on later).
PCOS does seem to have a genetic component, meaning that if you have a family member who has PCOS, you yourself are more likely to have it. Unfortunately, many women only discover or get diagnosed with PCOS after they try to get pregnant without success (since PCOS is strongly linked to infertility); however, PCOS is thought to begin early in puberty, often after your first period. It’s worth noting it can also develop in your 20s and 30s.
Ultimately, PCOS itself is a non-discriminating disease: it effects women of every ethnicity, race, and age, but because of medical gaslighting and deep-rooted problems with accessibility, racism, and sexism within the medical industry, BIPOC women are more likely to go undiagnosed with PCOS, in comparison to White women.
Why raising awareness of PCOS is important
PCOS can be extremely difficult to live with.
It is a unique condition in that its physical symptoms often exert major psychological and emotional distress onto those who suffer from it: in particular, hair loss, hormonal acne, hirsutism, and unexplained weight gain can all be symptoms that feel both at once very isolating, and also difficult to control. Many women report feeling out of touch and out of control of their bodies, making PCOS a daily struggle.
These physical symptoms can span both short and long-term, making women with PCOS at higher risk for anxiety and depression. Simultaneously, PCOS’ danger extends long-term, as it has been strongly associated with chronic illnesses such as obesity and diabetes, not to mention infertility, which may explain why women with PCOS are three-fold likely to experience mental health conditions, including OCD and eating disorders.
How to participate in PCOS awareness month
How you decide to participate in PCOS awareness month is entirely up to you.
Raising PCOS awareness is critical to promoting research funding, raising public consciousness, and increasing accessibility, and the methods by which we can reach those goals differ widely. Ultimately, though, whatever is most achievable and accessible for you, and whichever methods you are most comfortable with are the ones we recommend! With that being said, we’ve broken down all the ways you can participate in this important month into the following categories:
This umbrella essentially comes down to learning more about PCOS, its long-term health effects, and how to manage symptoms in a healthy and effective way. There is a decent amount of literature and articles on PCOS topics, which can be overwhelming and difficult to navigate at first, so we recommend starting out with the following articles:
- Understanding PCOS at a glance
- PCOS 101: Understanding Polycystic Ovarian Syndrome
- What Are the First Signs of PCOS?
- How To Test For PCOS (And What To Expect)
From there, it can be beneficial to understand research-backed ways PCOS symptoms can be minimized and managed. Nutrition, exercise, taking care of your mental health, and building healthy habits that feel right for you and your lifestyle are all key takeaways here, but read on for research results, practical steps, and advice from our Registered Dietitians!
- Managing PCOS
- Why Is Exercise Important? The Benefits of Physical Activity
- PCOS and Blood Sugar
- 5 At-Home Tips for Managing PCOS Pain
- Best Supplements for Managing PCOS
When it comes to your body and health, knowledge is power. The more you understand PCOS, the better equipped you’ll be to make decisions.
Finally, let’s talk about learning how to advocate for ourselves. Often, women and other feminine-presenting individuals are socialized to feel that standing up for oneself is ‘aggressive’ or that being outspoken about one’s needs is ‘hysterical.’ Obviously these myths are rooted in deeply sexist and patriarchal systems and beliefs, but since socialization is such a powerful thing, a lot of the time learning to be assertive and vocal about our needs is something that takes practice. So let’s take a look at some articles that may be beneficial to learning how to speak out in a medical context:
- Learning how to advocate for yourself
- Advocating For Yourself With PCOS
- What is Medical Gaslighting?
- The Role of Race in Understanding PCOS
- Allara’s Evidence Nutrition Library
Self-advocacy and education go hand in hand, which is why we highly encourage you to read the article we linked above, Advocating For Yourself With PCOS, if nothing else. This gives key insights into questions like how to know if you have PCOS, what to do if you don’t have the main symptoms, and questions to ask your doctor. We want to go one step beyond this now and discuss the diagnosis process, so you can advocate for yourself during this time to have the best chance of an accurate, informative diagnosis.
If you suspect you have PCOS, then it is our hope you have a doctor who can guide you through the process for getting tested for PCOS. If that is not the case, which it is for many women, then unfortunately you may have to have a good understanding of, and explicitly ask your doctor (or seek a second opinion) about, the following:
- The Rotterdam Criteria
- To be diagnosed with PCOS, you often need 2 of the following 3 Rotterdam criteria: you need to have not had a period for several months (or been extremely irregular), show physical signs of hyperandrogenism (such as hair on the face, check, and back, or acne, or hair loss on the scalp), and/or have 12 or more cysts on your ovaries measuring 2 mm to 9 mm in diameter. These are especially important to know so that, if your doctor dismisses your concerns, you can cite these industry-standard criteria as critical reasons to be tested.
- PCOS testing
- There are certain tests that you can request to be carried out if you suspect you have PCOS. Specifically, you may want to ask for a total and free testosterone test, LH and FSH tests (to check your thyroid), and a DHEAS test (moderately high levels of DHEAS are associated with hyperandrogenism).
- Internal ultrasound
- This can be insightful to understanding and identifying the source of pain (if you have PCOS pain), while it can also be helpful in deciding if you meet the Rotterdam criteria. Keep in mind, though, that many women with PCOS do not have cysts on their ovaries, and this does not exclude them from a diagnosis. Instead, an internal ultrasound is a key part of the bigger, holistic picture when it comes to understanding your health and defining a PCOS treatment plan that looks right for you.
All the above action points are examples of self-advocacy. Self advocacy can also look like searching for an endocrinologist, asking for a referral to a reproductive health specialist, signing up for an appointment with an Allara doctor, noting down your symptoms to share with your doctor at a later date, not taking ‘no’ for an answer, and sharing your experience with other women. Reading this article and empowering yourself through knowledge is another example of self-advocacy.
Finally, we want to reiterate that advocating for yourself can be difficult and uncomfortable. It should be the case that every doctor takes their patients’ concerns seriously; however, if it is the case that your doctor minimizes your concerns or brushes them under the rug, seriously consider requesting the above tests and ask what criteria you may meet. If you still feel unheard, then we strongly recommend you seek out a second opinion of a doctor who can advocate alongside you, as opposed to holding you back.
Amplify your voice, or the voice of leaders in the PCOS community. This can be as simple as following digital creators on Instagram, Facebook, TikTok, and other social media channels that provide useful insights for women with PCOS, liking and commenting on those posts, or sharing personal journeys from women living with PCOS.
Here are some awesome accounts to follow:
Amplifying your voice can also take the form of you sharing your PCOS story. Allara’s community is always a great place to share and connect with women who understand what you’re going through, while Reddit’s PCOS community is another great platform to share your experiences anonymously.
Check out Allara’s blog to read more personal journeys from Allara patients and advisors, and what advice they have for women who have recently been diagnosed with PCOS. To connect with more women who have PCOS, check out Allara’s private community. Sign up here for absolutely zero cost, here!
Allara Health provides personalized treatment for hormonal, metabolic & gynecological conditions that utilizes a holistic plan that merges nutrition, lifestyle, medication and supplementation, and ongoing, expert support to heal your body.