powered by:
uhn foundation
9 minute read
pcos can develop anytime after puberty, but typically doesn't get diagnosed until someone is in their 20s or 30s.
getty images
stay up to date on this topic
polycystic ovary syndrome, more commonly known as pcos, is a chronic hormonal or metabolic condition that affects roughly 1.4 million canadian women of reproductive age. that said, these numbers are an estimate only, as many cases of pcos go undiagnosed.
the onset of pcos can happen anytime following a person’s first menstrual period, but diagnosis often doesn’t occur until a woman reaches her 20s or even 30s.
what are the symptoms of pcos?
while social media may have people believe that there are four types of pcos, the medical community has yet to confirm these types. typically, there are two phenotypes of pcos that people can develop based on the primary symptoms they present with: hormonal or metabolic. these are divided into two categories because of how pcos presents.
the main symptoms that typically present with both types include irregular or missed periods, heavy or longer periods and, in some cases, ovarian cysts. however, other symptoms can develop depending on the type.
the metabolic presentation is the most common kind and is associated with symptoms such as:
- weight gain, especially around the midsection, and obesity or overweight
- significant difficulty losing weight
- insulin resistance
- dark and thick velvety patches of skin in the neck, armpits and groin
- high bad cholesterol and low good cholesterol
advertisement
if someone is more affected by hormone-driven pcos, it means that their levels of androgens and testosterone are often elevated. because of this, they can experience hormonal symptoms as well, including:
- acne
- excess facial and body hair
- thinning scalp hair
- difficulty getting pregnant due to a lack of ovulation
some people may experience symptoms of both hormonal and metabolic pcos, and while the name suggests that cysts are a key part of the condition, that’s not necessarily true.
“the name is a bit deceiving because the actual syndrome doesn’t always mean that you have cysts,” said julie mai, founder and ceo of july health, a digital health clinic focused on early diagnosis and management of hormonal causes of female infertility, noting that because of the two phenotypes, “it looks different in everyone.”
the stereotypes associated with pcos also make it challenging for people to discern between different phenotypes of pcos because the symptoms are entirely unique to the individual and how it’s impacting their body.
“it shows up in all shapes and sizes and presentations. there is, according to the world health organization, up to 70 per cent of global pcos cases go undiagnosed, and a theory for that is because of stereotypes,” mai continued. “there’s a stereotype that pcos is like an overweight, bearded lady presentation, quote unquote, as what i’ve seen on the internet. but again, people of all sizes can have pcos.”
advertisement
what causes pcos?
the medical community has yet to discover a direct cause of pcos, and the researchers aren’t getting any closer to an answer.
“i’m not sure if there will ever be an answer, or maybe not in our lifetime,” said mai. “but there are several theories.”
one of those theories is genetic predisposition. there are 19 possible genetic variants that could increase a person’s risk of developing pcos, some of which include issues with:
- androgen synthesis and action
- the action of the follicle-stimulating hormone receptor and luteinizing hormone/choriogonadotropin receptor
- insulin signalling
among those, there are several other rare variants and signalling issues that could play a role, but the jury is still out on which ones warrant the most focus. the theories of potential causes don’t stop there, though.
“there’s a whole conversation about endocrine disruptors, so potential microplastics or chemicals and just our everyday items that are potentially impacting our hormones and causing pcos symptoms,” said mai.
another more recent study out of india looked into childhood trauma as a potential contributor to pcos development later in life and found a relationship between childhood trauma and higher presentations of pcos.
advertisement
the study is in its early stages of understanding the why behind the connection, but it could be due to how trauma alters brain-body communication and signalling.
“my theory would be, just purely based on physiology, there’s a part of the brain that’s responsible for communicating and signalling hormones and your period. we call this the hypothalamic pituitary axis, and if you’re experiencing stress or trauma or you’re under-eating, then that part of the brain can tell the body, you know, it’s not safe for us to reproduce right now, so i’m going to maybe push back that period,” said mai. “that would be my theory is there is a relationship with the brain and your body keeping you protected.”
what are the health risks associated with pcos?
pcos-related health risks are two-fold because, in some cases, having certain conditions can amplify or make pcos worse, and having pcos can increase the risk of developing comorbidities.
“if you have type 2 diabetes, if you have high blood pressure, cholesterol, the more metabolic syndromes, then there’s a higher chance that it would impact your hormones and then you would get pcos,” said mai.
however, the hormonal side of things is “a bit more complicated.
advertisement
“i have a theory that there is still a lifestyle component, like if you’re under-eating for quite some time, or people who have a history of eating disorders, pcos can also still show up.”
newer research that mai believes isn’t going as fast as it could also has found some overlap between pcos and certain mental health conditions, such as:
- anxiety
- depression
- adhd
- neurodiversity
“there seems to be a relationship between the hormones and mental health that is just not getting enough attention,” she said.
people who don’t have any pre-existing conditions that could drive the onset of pcos also have a higher risk of developing certain health conditions alongside the syndrome, including:
- type 2 diabetes
- high blood pressure
- obstructive sleep apnea (osa)
- obesity or overweight
- higher cardiovascular disease risk
- higher risk of endometrial hyperplasia, a precancerous thickening that can lead to endometrial cancer
- metabolic dysfunction-associated steatotic liver disease (formerly non-2022年世界杯预选赛阿根廷 liver disease)
- depression
- anxiety
infertility is often regarded as a huge issue for people living with pcos. however, it is not the leading cause of infertility that many people say it is.
advertisement
“if pcos is going unmanaged and you’re getting irregular periods or not ovulating, then of course that would impact your fertility success,” said mai. “but if pcos is managed, it is very possible for someone with pcos to get pregnant, so it’s not directly causing infertility forever. that’s a common myth.”
how is pcos diagnosed?
to diagnose pcos, physicians use the rotterdam criteria, which assesses a person’s symptoms based on three categories:
- irregular or no periods (fewer than nine periods a year)
- cysts on the ovaries
- experiencing symptoms of high testosterone or androgens, either clinically or biochemically
to be diagnosed, a person must meet two of the three criteria. to test for cysts, ultrasounds are done, and a blood test can show elevated male hormones.
that said, while this is the process, the reality of diagnosis is often different.
“just as a provider, i’m finding historical blood work from some of my patients to be inconsistent,” said mai. “but pcos is considered a relatively newer condition, like within the last decade, a few decades versus a century.”
mai is well-versed in the diagnostic challenges women face, drawing on her experience with patients as well as research on the topic.
advertisement
“that is a very universal complaint that i’m hearing from women struggling with these symptoms,” she said regarding the late diagnosis of pcos. “women are feeling more dismissed. they had to wait an average of two years before they were able to get a diagnosis.”
even with the criteria assessments and tests available for pcos, as mentioned above, women continue to wait, on average, two years for a proper diagnosis because “there seems to be inconsistent education on how pcos is diagnosed.”
treating pcos
there is no one treatment for pcos, and while mai is “looking forward to seeing what pharmaceutical innovations will come for pcos,” current interventions revolve around medications, lifestyle and some supplements geared toward managing symptoms.
they all depend on what your blood work and symptoms tell your physicians.
“a physician may put you on a medication called metformin, which is known as a diabetes medication, but there’s lot of evidence to show it help with regulating ovulation, especially for people with pcos who are trying to get pregnant,” said mai.
metformin is commonly used for pcos and can help ease the effects of insulin resistance as well. for more hormonal symptoms driven by high androgens, a drug call spirolactone is often used. newer evidence is also making a case for glp-1s in the treatment of pcos, specifically metabolic symptoms.
advertisement
birth control pills are another possible option and are best for people who get irregular periods.
“if you are not getting a bleed or uterine line shed for several months, the risk of endometrial cancer is much higher and abnormal cell growth,” said mai. “so, it’s still important for that lining to shed, and a progesterone or hormonal birth control can do that. or people who have really heavy cycles, the birth control can help lighten that a little bit so you’re not getting super tired and anemic.”
when it comes to lifestyle, low-glycemic and anti-inflammatory nutrition plans are often effective at combating blood-sugar-related issues in pcos. certain supplements are also touted as helpful, but according to mai, “this is a messy world when we get to supplements.”
“inositol is the most researched pcos supplement and it’s typically used for supporting with insulin resistance, higher androgens, as well as irregular periods,” she said. “people with pcos and vitamin d deficiency present together, so a vitamin d supplement can be really helpful.”
omega-3 supplements, specifically, as opposed to a fish oil supplement that has a few different fish oils in it, are also beneficial.
while some evidence supports other supplements or natural products, such as spearmint tea for high testosterone, magnesium or berberine, “the latter have strong evidence and then the others are mixed reporting.”
advertisement
finding pcos resources
pcos can be challenging to deal with in many ways. from weight gain to having difficulty losing weight, excess hair, no periods or heavy periods, the way it presents, regardless of whether it’s different from person to person, is hard to cope with.
that said, it is highly manageable once you have a clear diagnosis. but with diagnostic issues and women feeling unheard, it can seem impossible.
advocating for oneself often involves ignoring the typical “come back if you want to get pregnant” advice that many women stereotypically hear and accessing resources.
“a lot of people, or an increasing amount of people, are not interested in getting pregnant these days, and you still deserve care,” said mai. “you should not have to wait until then in order to start managing your pcos. it can start now.”
you can work with registered dietitians to start nutrition interventions and access online resources such as pcos together, which offers a pcos toolbox that supports diagnostic pathways, mental health and lifestyle advice.
“i’ve also noticed a few more ai-powered apps that can help you prepare for an appointment with a provider and know what to ask,” said mai. “so, i think turning to these resources to know how to ask the right things or be able to advocate a little more.”
advertisement
“you can start managing pcos symptoms immediately,” she continued. “all of that can start right when you get diagnosed.”
share story
