Polycystic ovarian syndrome

PCOS, affects 5-10% of women of reproductive age.

However, there’s a big problem plaguing the PCOS community: PCOS is both overdiagnosed and underdiagnosed.

A couple years ago the criteria for diagnosing PCOS was expanded, and since then, the prevalence of PCOS has about doubled. On the other hand, women with a true PCOS diagnosis have reported a significant delay in receiving their diagnosis, placing them at greater risk of long-term health consequences.

Clearly when it comes to PCOS, misdiagnosis is a huge issue that needs to be addressed.

So if you’re dealing with inability to lose weight, uncontrollable acne, irregular cycles, and much more, how do you know if you actually have PCOS?

Symptoms of PCOS

Before we get into some other possibilities, let’s do a quick review of the most common PCOS symptoms. Classic PCOS symptoms include:

• Irregular or absent periods
• Difficulty getting pregnant
• Excessive hair growth on the body
• Thinning and loss of hair on the head
• Weight gain – despite your best efforts
• Oily skin and acne

Not all women with PCOS will have a “classic” constellation of symptoms, and this is where the underdiagnosis issue emerges.

For example, many women with PCOS are actually quite lean, with no signs other than irregular cycles. In other instances, many women with PCOS have regularly timed cycles, however upon closer inspection have really high testosterone levels on lab work.

You get the idea – everyone’s PCOS will look different, and therefore it’s often missed. As a general rule of thumb, if you’re experiencing any of the above symptoms, see your naturopathic or medical doctor.

What Else Could it Be?

On the other hand, because PCOS does look so different in each woman, AND the criteria for diagnosis is so wide, it’s easy to affix the diagnosis of PCOS to women with these symptoms — even though they might not actually have PCOS at all.

Remember, PCOS is a diagnosis of exclusion. That means any and all other possibilities must be ruled out first.

Unfortunately, many women slip through the cracks leading to a simultaneous overdiagnosis of PCOS.

So if it’s not PCOS, what else could it be? Here are some other possibilities to consider:

Aftermath of the Pill.

When we get off birth control, it takes our body time to relearn how to properly produce and cycle our reproductive hormones. This can lead to PCOS-like symptoms including irregular or absent periods, weight changes, and acne anywhere from 3 months to 1 year after coming off the pill. If you just got off the pill, wait at least 3 months before getting testing done to ensure you’re receiving an accurate diagnosis.

Premature Ovarian Insufficiency.

This is when your ovaries lose their function before the age of 40. It causes irregular/absent periods and infertility, making it look a lot like PCOS. Other symptoms to watch out for include night sweats and hot flashes. POI can be ruled out by looking at your pituitary hormone FSH on Day 3 of your period.

Hypothalamic Amenorrhea.

Amenorrhea translates to “no period”. In this condition, there seems to be communication errors between the brain and the ovaries. It can occur due to low weight, chronic stress, and in some cases is unexplained. The big symptom with PCOS is – you guessed it – no period. Looking at pituitary hormones such as FSH, LH, prolactin, as well as estrogen, can help diagnose this condition.

Congenital Adrenal Hyperplasia.

Better known as CAH, this is a genetically inherited disorder that can look a lot like PCOS. Androgen excess symptoms such as acne, increased body hair growth, thinning head hair, irregular cycles, and infertility are often present. You can eliminate this condition by running a simple blood test, 17OH progesterone, in the morning.

Cushing’s Disease.

Cushing’s Disease occurs when your body is producing abnormally high levels of cortisol (your stress hormone). Symptoms can look similar to PCOS and include weight gain, acne, increased hair growth, irregular cycles, and fatigue.

Hypothyroidism.

Yes, hypothyroidism can mimic PCOS, and interestingly it frequently occurs together with PCOS. Hypothyroidism can cause irregular or absent periods, weight gain, and metabolic dysfunction also seen in PCOS.

Hyperprolactinemia.

Hyperprolactinemia is when your body is producing abnormally high levels of prolactin. Prolactin is your milk stimulating hormone usually only produced while pregnant and breastfeeding. Symptoms that look similar to PCOS include irregular or absent periods, acne, excessive body hair growth, reduced libido, and painful sex.

You JUST got your period for the first time.

Another thing to consider is that if you just got your period for the first time and your cycles are abnormal, this does not mean you have PCOS. It’s normal to have PCOS-like symptoms in the first couple years of your period. Give your body some time to fine tune its process of producing and cycling hormones each month. If you come out of puberty and you’re still experiencing symptoms, then it’s definitely worth taking a closer look.

Androgen Producing Tumours.

Your adrenal glands can sometimes develop tumors that produce hormones. With androgen-producing tumours you get all the symptoms of androgen excess (which I’m sure you know by now). Not to fear though, these types of tumours are VERY rare and only occur in 2 out of every million people.

Ovarian Hyperthecosis.

To keep it simple, this disorder develops when ovarian cells are not developing properly. It leads to massive androgen excess- think acne, excessive body hair growth, loss of head hair, and central weight gain, making it look a lot like PCOS.

Other Considerations: Onset & Age

One thing I always ask my patients is WHEN did you start experiencing these symptoms for the first time?

Establishing a timeline is so important when it comes to obtaining a true PCOS diagnosis. Although there are always exceptions to the rule in medicine, I typically find when PCOS-like symptoms come on abruptly, it’s not PCOS.

Women with true PCOS often report experiencing these symptoms for years, and follow a slow, steady pattern of symptoms instead.

Next Steps

So you’re experiencing symptoms of PCOS and want to make sure you’re receiving the right diagnosis. What do you do?

The biggest piece of advice I can offer is to go visit your primary health care provider and voice your concerns!

Ensure you complte a thorough workup that not only investigates PCOS, but also the many other conditions that look like PCOS listed above.

Here are some things I like to look at in my patients with a suspected PCOS diagnosis:

• A general health assessment including fasting insulin, glucose, lipids (AKA fats think cholesterol), thyroid health, and general markers of inflammation.
• A thorough look at hormone levels at specific times during the menstrual cycle. This includes estrogen, progesterone, androgens (such as free testosterone, DHT, DHEAS, androstenedione), cortisol, as well as pituitary hormones such as FSH, LH, and prolactin.
• In certain cases other types of testing such as urine or saliva testing can also provide valuable insight.
• Last but not least, if you think you have PCOS, it’s really important to have an ultrasound to rule out other possibilities.

The Bottom Line

You deserve to be diagnosed accurately. Receiving the wrong diagnosis has real consequences. It delays effective treatment, it decreases your quality of life, and it puts you at risk for long term health concerns. Women with PCOS shouldn’t have to deal with this misdiagnosis issue any longer.

When it comes to your health, it’s important to be your own advocate AND have a doctor that will advocate for you. If you’re experiencing PCOS-like symptoms and don’t know where to begin, I’m here for you.

For some final words of wisdom, trust your intuition. Nobody knows your body better than you, if something feels off, it usually is.

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