What is PCOS? 7 Things you need to know

Understanding PCOS symptoms, diagnosis & risks

September is PCOS Awareness Month, learn more about PCOS Awareness Association.

What is PCOS?

PCOS, or polycystic ovary syndrome, is a chronic hormonal disorder that can affect many aspects of someone’s health. It often goes undiagnosed, even though it can have many effects on someone’s life.  It’s also very often misunderstood both by physicians and by patients, which can lead to significant physical and emotional challenges for those who are affected by PCOS. 

PCOS is one of the most common endocrine disorders in women worldwide. It usually starts in adolescence and can fluctuate over someone’s lifetime. It can vary in terms of prevalence in the population, but anywhere between 4 – 18% of people with ovaries may experience PCOS. At its very core, it’s a hormonal imbalance that disrupts the cyclical function of the ovaries. 

PCOS treatment options are discussed in this article Polycystic Ovarian Syndrome or PCOS Treatment.

These are 7 key points you need to know about PCOS:

1. PCOS: Symptoms
2. PCOS: Making the diagnosis
3. Why the name “polycystic ovary syndrome”?
4. What causes PCOS?
5. Lean PCOS
6. FAQ about PCOS
7. I think I have PCOS, now what?

What is PCOS: Symptoms

PCOS presents differently in every person, meaning not all women who have PCOS will have all of the symptoms.  The symptoms can also fluctuate over the course of someone’s life. Probably the most common symptom is irregular or even absent menstrual periods. An irregular cycle is going to be a cycle that’s less than 21 days or more than 35 days in length. When we’re talking about cycles, we’re talking about the first day of full flow of the period to the next first day of full flow of the period. 

It’s important to know that cycle patterns can fluctuate throughout someone’s life. Why is this important? Well, if ovulation does not occur the ovaries do not produce progesterone and the lining of the uterus can become thicker, and it will grow and grow and occasionally become unstable. When it’s unstable, it can start to break up and shed irregularly, which can result in sometimes heavy and or prolonged bleeding or irregular spotting which is why we often see patients with PCOS have irregular cycles. Many have very heavy periods or prolonged periods, where they’re having bleeding for 7 – 14 days or have ongoing vaginal spotting as well. 

Another symptom can be the presence of acne or excessive hair growth. Hair growth is very much related to a patient’s ethnicity and family history. The hair growth seen in PCOS is usually black and very coarse. You can also notice that there is a male pattern of hair growth.  You can see excessive hair on the upper lips, chin, neck, and sideburns as well as the chest and the abdomen. 

It is normal to have some hair in these areas but in PCOS the hair is thicker and more dense. Excess hair growth can be a sensitive subject for some women. A question to ask is, “Do you have more hair growth on your chin, upper arms, upper legs, and sideburns, than other women in your family?” This attempts to normalize it based on somebody’s family history and ethnicity because we know that there is a huge amount of normal variation. 

PCOS sometimes will also present with increased weight, especially around the abdomen.  That being said, up to 30% of women who have PCOS maintain a normal weight before and after the diagnosis so it’s not universal.  

What is PCOS: Making the diagnosis 

In 2003, there was a consensus workshop sponsored by the European Society of Human Reproduction and Endocrinology and the American Society of Reproductive Medicine in Rotterdam. Out of this meeting came this criteria for the diagnosis of PCOS.

There are 3 criteria in total and you need to meet 2 of 3 criteria for the diagnosis of PCOS to be true. It is very important to know that this is a clinical diagnosis; that means it’s not something that we would diagnose just by looking at an ultrasound or just blood work. It really requires looking at the whole person and taking a complete history. 

1. Irregular cycles: cycles that are more than 35 days apart, or having less than eight menstrual cycles in a year.
2. Excess androgens: either symptoms of this or high levels seen on blood work.  Androgens are a family of hormones that includes testosterone. We typically think of androgens as hormones that bring on signs or symptoms typically associated with male features. That could be things like acne or hirsutism, which is excess hair growth in male-pattern areas.  Again, you can have symptoms of it or blood work evidence of these excess androgens. Both of these would meet this criteria for the diagnosis of PCOS.  
3. Polycystic-appearing ovaries on ultrasound: Polycystic ovaries have more than 20 follicles in a single ovary or a volume that is bigger than 10ccs. There is a specific appearance of the follicles in the ovaries called, “the string of pearls”. It’s very important to note that these polycystic-appearing ovaries on ultrasound can be present in about 25% of healthy women with regular cycles who do not have PCOS. It’s also very important to understand that the ability to see an ovary on ultrasound and the experience of the person doing the ultrasound and interpreting the ultrasound also has an impact on determining whether the ovaries appear polycystic or not. 

Why are we seeing these polycystic looking ovaries? What are they? In a healthy fertile female (learn more about understanding the menstrual cycle), a single follicle will mature and undergo ovulation from a pool of these antral follicles, or “baby follicles” or “baby eggs” that are present in the ovary since the birth of that person.

In PCOS, what happens is that the follicles will grow up until a certain point and then they stop so you don’t get that dominant follicle that grows and becomes the big one that gets ovulated. They remain in this line where they stop growing and they can look like a string of pearls on ultrasound – it’s this follicular arrest that we’re seeing when we’re looking at polycystic- appearing ovaries on ultrasound.  

AMH is not part of the diagnosis, so checking an Anti-Mullerian Hormone (AMH) level is not part of the diagnostic criteria right now. That being said, in the next iteration or newer iterations of diagnostic criteria, AMH will likely get included. This is because we do know that women who have PCOS generally have very high AMH levels.

Another important aspect to the diagnosis is to recognize that it’s also a diagnosis of exclusion. This means that there are other conditions that can mimic PCOS. There could be things associated with elevated prolactin, thyroid dysfunction, or another condition called non-classical congenital adrenal hyperplasia or cushing syndrome. Meaning that all of these things need to be ruled out before we can say that the irregular cycles are associated with PCOS.    

The name “polycystic ovarian syndrome”

This has got to be one of my biggest pet peeves when it comes to the world of fertility, especially PCOS because I really dislike the name and I think it’s really misleading, which can lead to a lot of stress and anxiety and causes a lot of grief for our patients. 

These so-called “cysts on the ovaries” are not really cysts and the way that we think about them is, these are baby eggs or baby follicles. And so when we’re looking at an ultrasound, follicles may look the same as a cyst in the sense that you see fluid filled “sacs” on ultrasound, but it’s a really important distinction to make. Often when we think about cysts and ovarian cysts, we think about doing surgery to remove the cysts as a way to fix things. Or we think about the risk of cancer and them potentially being ovarian cancer. 

I get that question a lot, patients ask me, “Can I surgically remove these cysts  to fix my polycystic ovaries?”  Its a very logical question! The key point is that these are not cysts – these are  baby eggs. These are these little primordial follicles or antral follicles and we don’t want to remove them because if we do that, we’re going to actually significantly impact your egg reserve or your egg number. We see these follicles in a normal menstrual cycle; they will start growing and they will start cycling. 

Please keep in mind, PCOS is not the same as ovarian cysts.

What causes PCOS?

Why do some women have this condition and what’s actually going on? At a physiological or molecular level, the answer is nobody really knows. Similar to the answer to a lot of questions when it comes to fertility.

There is a lot of controversy. Many papers have been published on the topic but the pathway of PCOS is not very well understood. We know that genetics plays a huge role because it is seen in family history. Although we haven’t been able to identify a particular gene associated with PCOS, there are some theories about some exposures in utero that might predispose women to PCOS, but that too hasn’t been clearly understood. There have been some theories about endocrine disruptors associated with the pathophysiology of PCOS.  Endocrine disruptors are defined as chemicals that can interfere with the endocrine system by mimicking hormones, such as estrogen. 

At a molecular level, we know that PCOS is related to insulin resistance, and that can be part of the reason that we see increased weight gain. PCOS can have a number of other health issues and associate conditions and other health implications because of this insulin resistance. We know that people who have PCOS are at higher risk of developing type two diabetes.  When I see a patient who has irregular cycles and I’m suspecting PCOS, I will often check a hemoglobin A1C level or check blood sugar levels so that we can see whether there are spikes there as well. 

PCOS is also associated with obesity. Not every patient with PCOS is going to be obese but we know that there’s a much higher risk; about 80% of patients with it are going to be overweight or obese. 

We also see higher rates of obstructive sleep apnea in patients with PCOS. Obstructive sleep apnea or OSA is a condition where there is more soft tissue in the upper airways. And when somebody lies down and they’re asleep all those tissues relax. It can actually compress the airway and cause brief spells where the breathing stops otherwise known as apnea.  This can be very disruptive to somebody’s sleep! It can be quite dangerous also for the strain on the heart. People with sleep apnea may not know that they’re doing this (because they are asleep) and may not know that they’re having these periods where they stop breathing. Sometimes if they’re sleeping next to somebody they might recognize that they are snoring or might even recognize they have periods where they are waking up and gasping for air as if they had stopped breathing or as if they were holding their breath. That’s why sometimes I’ll talk to patients about organizing a sleep study to check this out. PCOS can also have higher rates of heart disease associated along with obesity and the sleep apnea.

In our world, we see patients with PCOS-related infertility and we’re going to talk a lot about that in part two of this series. The major factor that leads to infertility is the irregular cycles.

Another big thing that we see in the world of gynecology, is higher rates of endometrial cancer in patients with irregular menstrual cycles. This is really important. The lining of the uterus is called the endometrium and when a person has a period or a regular menstrual cycle that’s about 28 days, the lining of the uterus sheds and is regenerated every 28 days. And so it’s constantly being “changed out”, if you will. When we’re thinking about the lining of the uterus for patients with PCOS, they will have longer periods of higher levels of estrogen exposure without progesterone. Because again, they have not ovulated, so they don’t get a corpus luteum that produces progesterone. The lining of the uterus gets exposed to more estrogen for longer periods of time so it grows, grows, grows, grows, grows without that progesterone, meaning it can start becoming irregular. Over time – we’re talking 10-20 years, it can become precancerous or even cancerous. And that’s why there are higher rates of endometrial cancer amongst women with irregular and/or very prolonged menstrual cycles.  

When a patient has PCOS and very irregular cycles and they are over the age of 35, I will often talk to them about potentially doing a biopsy of the lining of the uterus, just to make sure that the lining is nice and healthy. 

Speaking of the endometrium, make sure to check out EP11: The endometrium explained with Dr. Chan, where Dr. Chan, REI goes into detail about the role of the endometrium in fertility! 

You may also be interested in learning about how natural cycle IVF works, as this could be a future step in your fertility journey.

I think is important to understand how PCOS can impact the health of a potential pregnancy.  Women who have PCOS and conceive, whether they conceive naturally or whether they conceive with the use of assisted reproductive technology, there are some increased risks in pregnancy. Some of these risks include gestational diabetes, which is why it’s very important for women to be screened for gestational diabetes early in pregnancy. There are also increased rates of high blood pressure, and preeclampsia. Women with PCOS may also have a slightly elevated risk of miscarriage; and this is related to the hormonal imbalance. There could be increased risk of weight gain during pregnancy.  Ideally, we want to see about 25lb of weight gain throughout the pregnancy but the number will depend on your starting BMI. In addition, there is increased rates of intrauterine growth restriction and preterm delivery; and this may have to do with placenta issues associated with gestational diabetes and high blood pressure. There is also increased risk of needing a cesarean delivery, not so much linked to PCOS itself but because of the gestational diabetes and the risk of having a bigger baby.

Its important to remember that having PCOS doesn’t mean you’re automatically going to have all of these issues! It also doesn’t mean that you are considered a high risk pregnancy, but it’s important to be aware so that we can minimize any of the risks associated with polycystic ovarian syndrome with early monitoring and early intervention as needed.

What is Lean PCOS?

Lean PCOS refers to a subtype of PCOS where individuals have a normal or low BMI but still exhibit the hormonal imbalances and symptoms associated with PCOS. It’s important to highlight that the symptoms and signs are actually really similar for lean PCOS patients as for other PCOS patients. About 20% of patients with PCOS will have lean PCOS. 

Patients with lean PCOS are more likely to be misdiagnosed because many people associate PCOS as somebody with higher weight. 

Common lean PCOS signs and symptoms:

• Menstrual dysfunction (irregular menstrual cycles). 
• Hirsutism
• Hormonal profiles; elevated levels of androgens that we discussed earlier
• Insulin resistance and type two diabetes. It is thought that patients who are obese with PCOS may have more severe blood sugar disturbances than people with lean PCOS. There was a study that was published in 2009 by Majumdar et al. (https://pubmed.ncbi.nlm.nih.gov/19562068/) which showed that there is a greater prevalence of type two diabetes and impaired glucose tolerance in obese PCOS patients. 

That being said, I think that there’s not a lot of research out there in the world specifically about lean PCOS. It’s really important to point out that not everybody with PCOS is going to be overweight or obese and it’s also important to point out that, although we talk about weight a lot, when it comes to PCOS, patients with lean PCOS, we don’t tell them to lose weight.  That’s really important – we’re just aiming for a healthy BMI for all of our patients. 

Check out EP26: The impact of body mass index(BMI) on fertility and assisted reproduction treatments (ART) for a deep dive into this topic. 

FAQ about What is PCOS  

What happens to people once they enter menopause, if they have PCOS?

There’s not a lot of research on this actually but we do know that as you enter menopause, if you had regular or irregular cycles now you’re going to have no cycles because that is the definition of menopause. This has nothing to do with PCOS – that’s just what menopause is. 

Whether or not the same metabolic abnormalities that a person had in their reproductive years continue after menopause is not very clear. For example, if you had insulin resistance prior to menopause due to PCOS you will likely continue to have insulin resistance in menopause.  

How do I cure my PCOS? 

There is no “cure” for PCOS, and what I mean by that is there’s no “magic pill” that we can give you. However, there are many management options for PCOS depending on your goals. Check out PCOS Part II:we’re going to go into management and treatment of PCOS(link). 

Does PCOS ever go away? 

PCOS waxes and wanes throughout the whole reproductive cycle.  Its very common for women to say: “You know when I was 16 my periods were very irregular and I had all of these issues and then I was on the birth control pill for a while and then I came off the birth control pill, and my cycles were regular and perfect and everything was fine, and now I’m back to having the PCOS symptoms again”. So it definitely waxes and wanes. It doesn’t necessarily disappear for good, but we do know that if women are overweight or obese and they then lose some weight, then that can make the symptoms of PCOS less severe, although it doesn’t really go away completely. 

What’s the difference between PCOS versus PCOD?

PCOS = polycystic ovarian syndrome

PCOD = polycystic ovarian disease

These acronyms are all describing the same phenomenon. There is really no big difference in the medical literature. 

I think I have PCOS, now what? 

We’ve covered a lot about various aspects of PCOS and there is still a lot more to talk about. Read along for Part 2.

If you’re having any of the symptoms described above or have any concerns about PCOS, please see your physician. 

If you’re specifically concerned about reproduction and PCOS and your ability to conceive, please see a fertility specialist. There are many options available for people with PCOS.  

Learn about our team at Markham Fertility Centre.

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