MYADVO ADVOCACY GUIDE
PCOS 101
Last updated on August 29th, 2024
Words by the MyAdvo Team, Medically reviewed by:
Dr. Alicia Robbins
MD, MSCP
Dr. Navya Mysore
MDCM, CCFP​
Olivia Wagner
MS, RDN, LDN, IFNCP,
CLT, MB-EAT
What is PCOS?
Polycystic ovary syndrome or PCOS is a common hormonal disorder that affects 5–10% of women* and people with female reproductive organs worldwide. It is not a disease but a syndrome, which is essentially a grouping of symptoms.
What causes PCOS?
Much is still unknown about the exact causes of PCOS, however, connections have been made around the prevalence of the
following factors:
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High levels of androgens: PCOS is associated with excess levels of sex hormones called androgens (testosterone is one example), which can throw reproductive hormones off balance and prevent ovulation. Ovulation is when the ovaries release eggs. This imbalance can cause a wide range of potential symptoms, including irregular or missed periods, facial hair growth known medically as hirsutism, acne, obesity, and infertility. All of which we’ll explore more deeply throughout this guide.
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Ovarian cysts: The term polycystic is a bit of a misnomer. While small fluid-filled sacs may develop on the ovaries and can be detected via ultrasound, they’re not actually cysts — they’re immature follicles, meaning they’re not ready for ovulation. What’s more, they’re not always present in people with PCOS.
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Insulin resistance: Highly prevalent, it shows up in 50% of people with PCOS and is linked to increased risk for other metabolic and endocrine disorders including type 2 diabetes.​
50%
PEOPLE WITH PCOS EXPERIENCE INSULIN RESISTANCE
Who's affected by PCOS?
There is evidence that PCOS can affect women of all ages — from childhood through menopause and beyond. But more research is needed.
1 in 10
WOMEN OF REPRODUCTIVE AGE HAVE PCOS
PCOS affects women primarily during their reproductive years.
Onset can occur during puberty, but due to overlapping symptoms between beginning menstruation and PCOS — such as irregular or missed periods and acne — it can often be difficult to get diagnosed at that time.
As a result, many women don’t find out about their PCOS until they stop hormonal birth control and start trying to get pregnant, and unfortunately, start experiencing fertility issues.​
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DID YOU KNOW?
Hormonal Birth Control
Often prescribed as a PCOS treatment, it
does not address the root causes of PCOS,
so it isn’t technically a treatment. However,
it can help some people alleviate certain
PCOS-related symptoms.
​​​​​​​​​​​​​​​Is PCOS genetic?
​Yes and no, but also partly. Studies show there’s a genetic link with PCOS via the X chromosome meaning it’s more likely to be passed down from mother to daughter.
However, PCOS is what’s called multifactorial, which means that while the hereditary component plays a role, lifestyle, environment, and stress are primary drivers for developing PCOS.
This includes families that may have a predisposition to being overweight or diabetic, which can increase the risk of being insulin resistant and therefore put someone at greater risk of having PCOS. As with many things regarding PCOS, more research is needed to fully understand the potential genetic and environmental factors with the greatest impact.​​​​​​​​​​​​​​​​​
1721
The year Italian physician Antonio
Vallisneri first described PCOS
symptoms
(MyAdvo wonders why we’re not further
along with research, but we digress.)
​​​​​​​​​​​​​​​What about differences by race?
​As we’ve touched on, people with PCOS have a higher risk of insulin resistance and are at greater risk of developing metabolic syndrome and type 2 diabetes — health concerns that impact Black and Hispanic women with greater frequency than white women.
One recent 2017 study looked to determine differences with regard to these risk factors among women of different races who have PCOS. The study found that Hispanic women tend to have more severe PCOS symptoms than non-Hispanic white women. While non-Hispanic Black women are on the milder end of the symptom-severity spectrum.
Beyond this initial analysis, more research is needed into the prevalence of PCOS and symptom severity among women of different races and ethnicities
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Recognize medical gaslighting: If your healthcare provider downplays or dismisses your symptoms without proper investigation, this is gaslighting. Other examples include:
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​​​​You doubt your own experience after an appointment.
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You feel your concerns are repeatedly ignored.
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You feel like your symptoms are in your head.
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You start to blame them on stress without further evaluation.
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REMINDER
Your symptoms are valid, and it’s your right to seek better care that includes testing or a referral to someone who can investigate further.
TRUST YOUR MIND-BODY CONNECTION
When managing PCOS, it’s important to stay open to what your body is telling you. Each person’s experience with PCOS is unique, but listening to your body’s signals will help you confirm if something feels off. You are the expert on your own body.
MYADVO TIPS
What are symptoms of PCOS?
Signs and symptoms can vary greatly, which is why it can be difficult for people to get diagnosed.
Here are some of the most commonly experienced symptoms: ​
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Irregular periods: This can include everything from missed or unpredictable periods, having no period at all, and/or experiencing prolonged or heavy bleeding.
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Excess hair growth: Hirsutism can be challenging as it can occur in places considered not socially acceptable for women, such as on the face and body, back, stomach, and chest.
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Adult acne: Or excess oil on the skin, which is caused by the increase in androgens. Breakouts may appear on areas such as the face, chest, and back and can be difficult to treat.
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Weight gain: PCOS can make it difficult to maintain a healthy weight. Most women with PCOS are overweight.
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Thinning hair: People may experience hair thinning and hair loss on the scalp.
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Dark patches: Known as acanthosis nigricans, these may form particularly in places where the skin creases such as the neck, groin area, and under the breasts.
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Skin tags: These small flaps of skin may appear under the arms or near the neck area.
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Chronic fatigue: People can have difficulty establishing a sleep rhythm and even after a good sleep can experience brain fog or a lasting “wired but tired” feeling.
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Mood swings: Including extreme or rapid mood changes, PMS symptoms, feelings of low motivation, and higher risk for depression and anxiety.
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70%
OF WOMEN WITH PCOS GROW
UNWANTED HAIR ON THEIR FACE
AND BODY
80%
OF WOMEN WITH PCOS ARE
OVERWEIGHT
Types of PCOS: Clinical and informal categorizations
As of now, medical experts don’t universally agree upon the types of PCOS, but we’ve pulled together common groupings
based loosely on symptoms and hormone levels compared to causes.​​​​​
CLINICAL
Type A: Full Blown PCOS
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High levels of androgens
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Problems with ovulation/ irregular periods
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Small “cysts” (follicles) on ovaries
Type B: Non-PCO PCOS
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High levels of androgens
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Problems with ovulation/ irregular periods
Type C: Ovulatory PCOS
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High levels of androgens
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Small “cysts” (follicles) on ovaries
Type D: Non-hyperandrogenic PCOS
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Problems with ovulation/ irregular periods
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Small “cysts” (follicles) on ovaries
INFORMAL*
Insulin-resistant PCOS (akin to Type A)
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Most common type
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High levels of insulin/ blood sugar
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Weight gain/ trouble losing weight
Adrenal PCOS (akin to Type B)
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Elevated DHEA-S, DHEA androgens
Inflammatory (or hidden-cause) PCOS
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Chronic inflammation often due to food
sensitivity, leaky gut, environmental toxins,
thyroid disease, and autoimmune disorders -
Inflammation can be driven by blood glucose
dysregulation and poor insulin sensitivity as well as GI infection
Pill-induced (or post-pill PCOS)
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Normal periods before taking the pill
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Often temporary. Reevaluate after ~6-12 mos
*As a reminder, these are informal categorizations generally supported by functional medicine due to the overlapping influence of lifestyle and environmental factors.​
MYADVO TIPS
Start tracking your symptoms: It’s one of the most effective ways to stand firm in your experience. Track everything from when acne shows up to when you feel fatigued or when mood swings become severe. If you menstruate, tracking your cycle alongside symptoms can help paint a bigger picture.
Start tracking your symptoms: Describe your symptoms clearly by explaining how the symptoms feel, where you feel them, when they happen and for how long. Emphasize how these symptoms are impacting your life.
For example, try framing your statement like this:
“I’ve noticed X, which is making me experience Y. This is affecting my life in Z way.”
How PCOS can impact you
CLINICAL
METABOLIC DISORDERS
When you don’t ovulate, you don’t release eggs
to be fertilized. This is why PCOS makes it more difficult (though not impossible) to get pregnant. It’s the leading cause of infertility in women. However, most cases of PCOS infertility can be treated with a combination of diet and lifestyle changes and ovulation-inducing medications.
Insulin-resistant PCOS increases the risk of developing other health conditions including type 2
diabetes, high blood pressure, high cholesterol, and
heart disease.
DEPRESSION, ANXIETY AND LOW SELF-IMAGE
PCOS can create hormonal imbalances that trigger
depression and anxiety. Secondarily, the shame and
stigma that comes with common PCOS symptoms,
such as facial hair growth and weight gain, can
take a toll on mental health, too, and should not be
overlooked.
ENDOMETRIAL CANCER (OF THE UTERINE LINING)
40%
OF INFERTILITY IN WOMEN IS
CONTRIBUTED TO PCOS
Lack of ovulation, which is when the uterine lining
sheds and you menstruate, can cause the lining to
build up over time. This thickening increases the
risk of women with PCOS developing endometrial
cancer, making PCOS a leading risk factor
MYADVO TIPS
Start tracking your symptoms: It’s one of the most effective ways to stand firm in your experience. Track everything from when acne shows up to when you feel fatigued or when mood swings become severe. If you menstruate, tracking your cycle alongside symptoms can help paint a bigger picture.
Start tracking your symptoms: Describe your symptoms clearly by explaining how the symptoms feel, where you feel them, when they happen and for how long. Emphasize how these symptoms are impacting your life.
For example, try framing your statement like this:
“I’ve noticed X, which is making me experience Y. This is affecting my life in Z way.”
Getting Diagnosed
It’s important to keep in mind that it can take a long time to get an official PCOS diagnosis. Due to a combination of the wide-ranging symptoms and treatment options, lack of in-depth research, plus providers with varying degrees of familiarity and experience treating patients with PCOS.
An international survey of ~1,400 women with PCOS found that nearly 2 in 3 were unhappy with how long it took to get diagnosed with PCOS.
3+ providers
NEARLY HALF OF THE WOMEN SURVEYED SAW MORE THAN A FEW
PROVIDERS ON THEIR WAY TO A DIAGNOSIS
MYADVO TIPS
Start tracking your symptoms: It’s one of the most effective ways to stand firm in your experience. Track everything from when acne shows up to when you feel fatigued or when mood swings become severe. If you menstruate, tracking your cycle alongside symptoms can help paint a bigger picture.
Start tracking your symptoms: Describe your symptoms clearly by explaining how the symptoms feel, where you feel them, when they happen and for how long. Emphasize how these symptoms are impacting your life.
For example, try framing your statement like this:
“I’ve noticed X, which is making me experience Y. This is affecting my life in Z way.”
The Rotterdam Criteria
There’s no single test your doctor can do to diagnose you with PCOS. Based on what’s known as the Rotterdam Criteria, providers typically diagnose PCOS based on the presence of 2 out of 3 main factors:
• Irregular periods
• High androgens
• Ovarian cysts
Providers may confirm your diagnosis with a physical or pelvic exam. Additional testing may include a pelvic ultrasound to confirm if you have cysts on the ovaries and blood tests to check androgen and insulin levels.
IRREGULAR
PERIODS
HIGH
ANDROGENS
OVARIAN
CYSTS
How do you treat PCOS?
While much may still be unknown about PCOS, taking a whole-body approach to address your unique needs and symptoms can go a long way toward meeting your health goals. Diet and lifestyle adjustments are often a primary treatment option for all types of PCOS. There are a variety of medications that may be recommended by your physician relative to your unique
PCOS experience and severity. Depending on where you are in your fertility journey and what your goals are, the birth control pill may also be prescribed to quell symptoms of PCOS.
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Lifestyle changes
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- DIet. Prioritizing blood sugar balance is key, such as with regular mealtimes, healthy portion sizes, and a focus on protein and fiber intake. Stick to whole-food carbs from foods like produce, beans, and whole grains.
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Exercise. Walking is a great option for people under a lot of stress. You can also try moderate- (vs high-) intensity workouts if you’re not seeing results. Adding resistance and weight training to your routine can help, too.
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Sleep. Supporting a healthy circadian rhythm and improving your sleep patterns can have an impact on blood glucose response, stress hormones, and healthy sex hormone signaling.
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Supplements While it’s vital to work with a trained specialist to find the right protocol for your unique needs, the following supplements are often supportive of PCOS: ALA, berberine, chromium, cinnamon, fish oil, green tea extract, inositol, NAC, licorice, nettle, saw palmetto, magnesium, spearmint, white peony, vitamin D, sulforaphane, and vitex.
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Pharmaceuticals are available to treat a range of PCOS symptoms, such as for hair removal, type 2 diabetes, and fertility issues. These should only be used under the supervision of a trained professional, and may include drospirenone-containing birth control pills, metformin, and GLP-1s, among others.
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Laparoscopic ovarian drilling (LOD) is a procedure used to increase ovulation and treat infertility in women with PCOS by making tiny holes in the ovaries. It is not without risks, however, and should only be considered in select cases. Newer, more minimally invasive treatment options are also gaining in popularity, but have yet to see widespread acceptance.​​​​​​​
MEDICATION
SURGERY
Stay open, keep tracking, and ask for help: PCOS is complex. There’s no one-size-fits-all solution, so maintaining an open mind and being willing to adjust your treatment plan is key.
Regular testing combined with tracking how your symptoms change as you make lifestyle adjustments will help you refine your approach and find what works best.
​In our modern world, everything from our fast-paced lifestyles to more sedentary jobs and increasingly processed food, makes it normal to feel off — but you’re not alone, and you can ask for help. You got this.
MYADVO TIPS
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What causes PCOS?There is no black and white answer. However, correlations have been made with people having PCOS and high levels of androgens, the presence of ovarian cysts, and/or insulin resistance.
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Is PCOS genetic?There is a genetic link between mothers and daughters who have PCOS, but lifestyle, environment, and stress levels are thought to be the primary drivers for developing the condition.
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How do I know if I have PCOS?Based on what’s known as the Rotterdam Criteria, providers typically diagnose PCOS based on the presence of 2 out of 3 main factors: irregular periods, high levels of androgens or sex hormones, and ovarian cysts.
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What’s the difference between PCOS and polycystic ovaries?PCOS (polycystic ovary syndrome) is a hormonal condition that causes symptoms like irregular periods, excess hair growth, and fertility issues. PCO (polycystic ovaries) refers to the presence of multiple cysts in the ovaries seen on an ultrasound. However, the presence of cysts doesn’t necessarily indicate a hormonal imbalance or that the person will experience symptoms.
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Is there an age of onset for PCOS?PCOS affects women primarily during their reproductive years. Symptoms may start presenting themselves during puberty. However, evidence suggests that PCOS can affect women of all ages.
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What are the most common symptoms?Irregular periods, excess hair growth or hirsutism, adult acne, weight gain, thinning hair, dark patches on the skin, skin tags, chronic fatigue, and mood swings.
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What are the 4 main phenotypes of PCOS?Type A: Full Blown PCOS; Type B: Non-PCO PCOS; Type C: Ovulatory PCOS; Type D:Non-hyperandrogenic PCOS.
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What health issues is PCOS most commonly misdiagnosed as?Common misdiagnoses of PCOS include thyroid issues, primary ovarian insufficiency (POI), hyperprolactinemia, hypothalamic issues, congenital adrenal hyperplasia (CAH), and cushing’s syndrome. Since there isn’t a single lab test available to diagnose PCOS, it’s important for your provider to be familiar with the Rotterdam Criteria, so they can look at your health holistically and rule out other conditions through blood tests and imaging
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How else can PCOS impact me?Insulin-resistant PCOS can increase the risk of developing other metabolic disorders. Depression and anxiety can also be caused by hormonal imbalances and/or due to the stigma associated with certain symptoms. These are just a few potential impacts.
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What about PCOS and infertility?While PCOS is the leading cause of infertility in women, most cases can be treated with a combination of diet and lifestyle changes plus ovulation-inducing medications
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What type of provider should I see for PCOS?You’ll likely rely on a variety of providers depending on your unique PCOS experience. Initial providers may include your PCP, gynecologist, or functional medicine practitioner. Additional specialists may include: endocrinologist, fertility specialist/reproductive endocrinologist, nutritionist, dermatologist, and therapist or psychologist.
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What are the most common treatment options?Diet and lifestyle modifications, including exercise and building a regular sleep schedule, are primary treatment options for most people with PCOS. Depending on your unique presentation, medications may also be prescribed. It’s important to work with a trained professional to address your body’s unique needs.
Frequently Asked Questions
Why MyAdvo Cares
At MyAdvo, we are committed to empowering individuals with PCOS to become active participants in their healthcare journey. Our PCOS 101 Guide is a valuable resource that provides you with a comprehensive understanding of PCOS, its symptoms, and available treatment options. We believe that knowledge is power, and by arming yourself with the right information, you can confidently engage in discussions with your healthcare providers, advocate for appropriate testing and treatments, and make informed decisions that align with your unique needs and preferences. MyAdvo is here to support you in navigating the complexities of PCOS and empower you to take control of your health
References
1. Khan MJ, Ullah A, Basit S. Genetic Basis of Polycystic Ovary Syndrome (PCOS): Current Perspectives. Appl Clin Genet. 2019;12:249-260
https://doi.org/10.2147/TACG.S200341
2. CC BY-NC-ND 4.0 · Geburtshilfe Frauenheilkd 2020; 80(02): 161-171
DOI: 10.1055/a-1081-2036 https://www.thieme-connect.de/products/ejournals/html/10.1055/a-1081-2036
3. Welt CK, Carmina E. Clinical review: Lifecycle of polycystic ovary syndrome (PCOS): from in utero to menopause. J Clin Endocrinol Metab. 2013 Dec;98(12):4629-
38. doi: 10.1210/jc.2013-2375. Epub 2013 Sep 24. PMID: 24064685; PMCID: PMC3849665. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3849665/
4. Speca S, Napolitano C, Tagliaferri G. The pathogenetic enigma of polycystic ovary syndrome. J Ultrasound. 2007 Dec;10(4):153-60. doi: 10.1016/j.
jus.2007.09.006. Epub 2007 Oct 22. PMID: 23396998; PMCID: PMC3553224. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3553224/
5. Engmann L, Jin S, Sun F, Legro RS, Polotsky AJ, Hansen KR, Coutifaris C, Diamond MP, Eisenberg E, Zhang H, Santoro N; Reproductive Medicine Network.
Racial and ethnic differences in the polycystic ovary syndrome metabolic phenotype. Am J Obstet Gynecol. 2017 May;216(5):493.e1-493.e13. doi: 10.1016/j.
ajog.2017.01.003. Epub 2017 Jan 16. PMID: 28104402; PMCID: PMC5420474. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5420474/
6. https://www.webmd.com/women/what-is-pcos; https://www.pollie.co/blog/pcos-types
7. Khan MJ, Ullah A, Basit S. Genetic Basis of Polycystic Ovary Syndrome (PCOS): Current Perspectives. Appl Clin Genet. 2019;12:249-260
https://doi.org/10.2147/TACG.S200341
8. Gibson-Helm M, Teede H, Dunaif A, Dokras A. Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary
Syndrome. J Clin Endocrinol Metab. 2017 Feb 1;102(2):604-612. doi: 10.1210/jc.2016-2963. PMID: 27906550; PMCID: PMC6283441. https://pubmed.ncbi.
nlm.nih.gov/27906550/
9. https://avivaromm.com/pcos-natural-prescription/
10. https://www.healthline.com/health/polycystic-ovary-disease#medical-treatments
11. Mercorio A, Della Corte L, De Angelis MC, Buonfantino C, Ronsini C, Bifulco G, Giampaolino P. Ovarian Drilling: Back to the Future. Medicina (Kaunas). 2022
Jul 27;58(8):1002. doi: 10.3390/medicina58081002. PMID: 36013469; PMCID: PMC9416052. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9416052/
12. https://www.medicinenet.com/is_there_a_difference_between_pco_and_pcos/article.htm
13. https://www.pollie.co/blog/six-misdiagnoses-for-pcos#:~:text=Approximately%201%20in%2010%20menstruating,you%20can%20rule%20them%20out
Additional sources referenced:
https://www.womenshealth.gov/a-z-topics/polycystic-ovary-syndrome
https://www.healthline.com/health/polycystic-ovary-disease
https://www.who.int/news-room/fact-sheets/detail/polycystic-ovary-syndrome
Barry JA, Kuczmierczyk AR, Hardiman PJ. Anxiety and depression in polycystic ovary syndrome: a systematic review and meta-analysis. Hum Reprod. 2011
Sep;26(9):2442-51. doi: 10.1093/humrep/der197. Epub 2011 Jul 1. PMID: 21725075. https://pubmed.ncbi.nlm.nih.gov/21725075