PCOS: what it is, how to manage your symptoms & more need-to-knows

First things first, what is PCOS?

Polycystic Ovary Syndrome or PCOS is a complex hormonal condition that interferes with ovulation and the menstrual cycle (1). It affects between 6 and 19% of women and unknown numbers of transgender, non-binary and gender non-conforming people  (2, 3). Despite its frequency and our understanding of the condition steadily rising, PCOS is still poorly understood and rarely makes the spotlight. Let’s change that. Let’s speak up. Let’s talk about PCOS.

What’s in a name?

Give us a second here to rant about the name PCOS, we promise it will be brief and important. The name PCOS stems from the fact that some PCOS sufferers have ovaries that contain numerous small fluid-filled follicles, or cysts (4). Polycystic = many cysts. However, not everyone with PCOS has cysts and likewise, not everyone with cysts has PCOS (5). So, as you can imagine, we have some serious beef with the name PCOS and the confusion it creates (6). Because well, it's misleading. Polycystic ovaries are not an essential part of the condition. Additionally, it implies that cysts are the problem when the real problem is dysfunctional hormones, which can lead to cysts (7). So, while no, the name PCOS isn’t likely to change anytime soon, this is a good thing to be aware of. No confusion here! 

 What PCOS is really: dysfunctional hormones

Let’s get into the nitty gritty for a moment. Normally throughout the menstrual cycle, the brain communicates with the ovaries to produce the reproductive hormones required to get the body ready for a potential pregnancy. In PCOS, however, this process goes slightly haywire, and the brain sends out abnormal signals. Stay with us here. One of these hormones, luteinizing hormone (LH), starts getting secreted at a faster rate, leading to the ovary being stimulated to make androgens (male hormones) over estrogens (remember that the ovaries are hormone-making machines). This results in hormonal abnormalities that can interfere with normal ovulation by affecting egg development or preventing the release of an egg. 

What are the symptoms?

PCOS symptoms occur across a spectrum of severity. Some people might experience a range of symptoms while around half experience no symptoms at all (8). Now before we jump right into them, let’s be mindful that a lot of these can be, well…common. Take, for example, acne, irregular cycles, mood changes, haven’t we all been there? It can be tempting to try to self-diagnose PCOS based on one symptom, but it is important to remember that PCOS is a condition that involves a group of symptoms and that if you are concerned about the possibility of PCOS, that you speak with your doctor (9). No, if you have some facial hair, you likely don’t need to rush to the doctor. Some possible symptoms include:

  • Irregular periods
  • Weight gain
  • Acne
  • Excessive body hair
  • Mood changes
  • Dark patches of skin
  • Thinning hair (on head)

 The true impacts of PCOS

The reality of living with PCOS, as echoed across patient stories, is so much more than just a list of symptoms or simplified clinical definitions. PCOS can extend into many other facets of the body and can severely impact one’s quality of life (10) from:

  • Sleep difficulties
  • Mental health concerns
  • Increases in weight
  • Negative body image
  • Eating disorders
  • Difficulties with sex
  • Problems conceiving
  • A greater risk of cardiovascular disease, type 2 diabetes, pregnancy complications and endometrial cancer

 What causes PCOS?

Great question and one we would love to know the answer to. Unfortunately, the cause of PCOS is not yet known (I know, we are mad about it too). What we understand is that PCOS is multifaceted and complex, it doesn’t occur from one single cause but rather is believed to arise from a complex interplay of genetics and environmental factors (11). As research efforts continue, we will be on the edge of our seats.

Myth busting

Myth: Obesity causes PCOS

Fact: Obesity does not cause PCOS! Studies show that while around 60% of people with PCOS are obese, the overall prevalence of PCOS across different BMI groups is actually similar (12). Meaning that while it is common, it is not an essential feature of PCOS (13)

How is it diagnosed?

Now you may be wondering how this complex and often vague condition is diagnosed. Well often, it is not a smooth process, with the majority having to see at least three doctors in order to reach a diagnosis and many feeling inadequately informed about the condition (14). It is not uncommon for it to go on undiagnosed or to only get discovered when someone is trying to get pregnant. To diagnose PCOS, we use something known as the Rotterdam criteria (15). You need to have at least 2 of these features to be diagnosed.

  • Irregular periods – meaning your ovaries do not regularly release eggs (ovulation)
  • Excess androgen – high levels of male hormones in the body
  • Polycystic ovaries – of a specific size on one or both ovaries as detected by ultrasound

Tuning in with your body

The importance of listening to your body may seem obvious, but it is extremely important. Your menstrual cycle is considered a vital sign (just like heart rate, temperature and so on) and helps to signal how your body and hormones are functioning (16). It is important that everyone regularly checks in with their body (how you doin’?) and it can be incredibly helpful to track your cycle (and any symptoms). If you feel that something isn’t right, do not be deterred from seeking help for fear of not being believed or being told that it is “just in your head”. What you are experiencing is real and you know your body better than anyone. If a provider isn’t listening to you, go somewhere else!

Management Tips

Unfortunately, there is no cure for PCOS. However, it isn’t all bad news. Management options exist that can help reduce symptoms and improve your quality of life.

Healthy eating and regular exercise are recommended as the first line of treatment for everyone with PCOS. Studies have shown that losing even a small amount of weight (2-5%) can help de-amplify some of the impacts of PCOS and help restore ovulation (17).

Additionally, if you have signs of insulin resistance (a common presentation in PCOS), your doctor may consider putting you on certain insulin-sensitising medications. These changes are crucial, both in the short term and in the long term, as they reduce the chance of metabolic diseases that pose a higher risk in some people with PCOS.

Myth busting:

Myth: You can’t get pregnant if you have PCOS

Truth: While some people might have difficulties conceiving naturally and may require medication to help promote ovulation, many people have no difficulties at all. In fact, studies have shown that women with and without PCOS have similar numbers of children (18).

And more management tips…

If you are not trying to get pregnant and depending on your symptoms, your doctor may consider putting you on birth control pills. Birth control pills are a great form of management for PCOS. No, they don’t just mask your symptoms, they actually help to reduce levels of androgen, especially testosterone (19). If the pill isn’t an option, cyclic progesterone can be used to induce regular withdrawal bleeds. If you do plan to get pregnant, discuss this with your doctor who may prescribe medications to help induce ovulation. Let’s not forget that there are many other symptoms and impacts of PCOS. Managing these requires a lot of self-compassion, self-care and often support from several different health professionals. Nevertheless, flourishing with PCOS is possible, we promise.

Final word

If you suspect PCOS, consider keeping track of your symptoms and seeking help. Remember you don’t have to just put up with it, help and support are available.

Zoe Sever is Unfabled's Clinical Lead. Zoe brings a wealth of knowledge from her broad spanning background, having started her career in Nursing and transitioning to Sexology and Research. She holds a Master’s in Sexual and Reproductive Health and is currently pursuing a PhD in Women’s and Reproductive Health at Oxford University. On a mission to empower individuals with cycles to better understand their bodies, Zoe is helping us to banish shame, stigma and demystify reproductive health.

 

Resources:

Information:

https://www.acog.org/womens-health/faqs/polycystic-ovary-syndrome-pcos

https://owh-wh-d9-dev.s3.amazonaws.com/s3fs-public/documents/fact-sheet-pcos.pdf

Personal stories:

https://helloclue.com/articles/cycle-a-z/getting-diagnosed-with-pcos-personal-experiences-and-advice

https://www.youtube.com/watch?v=-ZEZ0reBvl0

Podcast:

The PCOS Girls Podcast

Apps:

AskPCOS App

References:

  1. Witchel SF, Oberfield SE, Peña AS. Polycystic Ovary Syndrome: Pathophysiology, Presentation, and Treatment With Emphasis on Adolescent Girls. Journal of the Endocrine Society. 2019;3(8):1545-73.
  2. March WA, Moore VM, Willson KJ, Phillips DI, Norman RJ, Davies MJ. The prevalence of polycystic ovary syndrome in a community sample assessed under contrasting diagnostic criteria. Hum Reprod. 2010;25(2):544-51.
  3. Yildiz BO, Bozdag G, Yapici Z, Esinler I, Yarali H. Prevalence, phenotype and cardiometabolic risk of polycystic ovary syndrome under different diagnostic criteria. Hum Reprod. 2012;27(10):3067-73.
  4. Azziz R. Polycystic ovary syndrome: what's in a name? J Clin Endocrinol Metab. 2014;99(4):1142-5.
  5. Johnstone EB, Rosen MP, Neril R, Trevithick D, Sternfeld B, Murphy R, et al. The polycystic ovary post-rotterdam: a common, age-dependent finding in ovulatory women without metabolic significance. J Clin Endocrinol Metab. 2010;95(11):4965-72.
  6. Chiu WL, Kuczynska-Burggraf M, Gibson-Helm M, Teede HJ, Vincent A, Boyle JA. What Can You Find about Polycystic Ovary Syndrome (PCOS) Online? Assessing Online Information on PCOS: Quality, Content, and User-Friendliness. Semin Reprod Med. 2018;36(1):50-8.
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  8. El Hayek S, Bitar L, Hamdar LH, Mirza FG, Daoud G. Poly Cystic Ovarian Syndrome: An Updated Overview. Front Physiol. 2016;7:124.
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  10. Tabassum F, Jyoti C, Sinha HH, Dhar K, Akhtar MS. Impact of polycystic ovary syndrome on quality of life of women in correlation to age, basal metabolic index, education and marriage. PLoS One. 2021;16(3):e0247486.
  11. Sadeghi HM, Adeli I, Calina D, Docea AO, Mousavi T, Daniali M, et al. Polycystic Ovary Syndrome: A Comprehensive Review of Pathogenesis, Management, and Drug Repurposing. Int J Mol Sci. 2022;23(2).
  12. Lim SS, Davies MJ, Norman RJ, Moran LJ. Overweight, obesity and central obesity in women with polycystic ovary syndrome: a systematic review and meta-analysis. Human Reproduction Update. 2012;18(6):618-37.
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  14. 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;102(2):604-12.
  15. Escobar-Morreale HF. Polycystic ovary syndrome: definition, aetiology, diagnosis and treatment. Nature Reviews Endocrinology. 2018;14(5):270-84.
  16. Care ACoAH. ACOG Committee Opinion No. 349, November 2006: Menstruation in girls and adolescents: using the menstrual cycle as a vital sign. Obstet Gynecol. 2006;108(5):1323-8.
  17. Kataoka J, Tassone EC, Misso M, Joham AE, Stener-Victorin E, Teede H, et al. Weight Management Interventions in Women with and without PCOS: A Systematic Review. Nutrients. 2017;9(9).
  18. Holton S, Papanikolaou V, Hammarberg K, Rowe H, Kirkman M, Jordan L, et al. Fertility management experiences of women with polycystic ovary syndrome in Australia. Eur J Contracept Reprod Health Care. 2018;23(4):282-7.
  19. Zimmerman Y, Eijkemans MJ, Coelingh Bennink HJ, Blankenstein MA, Fauser BC. The effect of combined oral contraception on testosterone levels in healthy women: a systematic review and meta-analysis. Hum Reprod Update. 2014;20(1):76-105.

 

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