I was diagnosed with polycystic ovarian syndrome (PCOS) years ago and all I understood from that diagnosis was that I probably would have trouble getting pregnant one day.

I lived the majority of my 20s believe that “statement.” It wasn’t until my late 20s that I learned the truth about PCOS and how it actually impacts fertility, hormones, and life in general.

First, let’s start with what PCOS actually is:

PCOS is “a group of symptoms related to anovluation (lack of ovulation) and a high level of androgens or male hormones.” (Briden, Lara, Period Repair Manual. 2017.) PCOS is commonly known for causing irregular periods, excessive facial and body hair, acne, hair loss, weight gain and infertility. PCOS can also be associated with risk of diabetes and heart disease which makes this much bigger than a “period problem.”

How is PCOS diagnosed?

If your experience is like mine, then you were diagnosed with PCOS by ultrasound, which is completely inaccurate. PCOS cannot be diagnosed by an ultrasound. When we get ultrasounds, little “cysts” are visible on the ovaries, but those are actually ovarian follicles. These small follicles are normal and fluctuate each month depending on where you are in your cycle. These cysts, or follicles, grow, burst and reabsorb each cycle.

The “typical” sequence looks like this: the ovaries can have up to 12 (for an adult) or 25 (for a teenager) developing follicles leading up to ovulation. One of those follicles then becomes dominant and “overpowers” the others for the remainder of the cycle.

For someone with PCOS, a dominant follicle does not form and the rest of the follicles continue to grow larger. The woman then ends up with many small undeveloped follicles which are the “cysts” that the ultrasound detects. As Dr. Briden describes it, “Polycystic comes from poly (meaning multiple) and cystic (meaning follicles). It means multiple follicles.”

Multiple follicles can occur because the woman did not ovulate (anovulation). Without ovulation, a higher number of follicles “remained” on the ovaries rather than having one dominant follicle “overpower” the others. This occurrence is not consistent, either. Our bodies change and each cycle could look differently. The body makes new follicles each month, so if you don’t ovulate one month, it doesn’t mean that you won’t ovulate the following month. If you look at your ovaries on an ultrasound at different parts of the month, then they would look different based on the maturation of the follicles.

So, since PCOS cannot be diagnosed by ultrasound, that means we must look at other factors. The most widely-known and straight-forward criteria comes from the Androgen Excess and PCOS Society. According tp the society, a woman qualifies for PCOS when she meets all three of the following:

ovarian dysfunction and/or polycystic ovaries
clinical and/or biochemical hyperandrogenism
exclusion of other conditions that would cause hyperandrogenism

This mean that you must have:

irregular periods or polycystic ovaries on an ultrasound
high androgens on a blood test or symptoms of high androgens
other reason for high androgens have been ruled out

The next thing you might be asking yourself is “How do I know if I have high levels of androgens?” Well, you could look at symptoms such hirsutism (excessive hair growth on your face and body), acne (especially around the chin), or hairloss/hair thinning. To be more specific on diagnosing, you need to look at blood results. The best blood test for androgen excess is free testosterone, but looking at total testosterone, androstenedione, and DHEAS are also helpful.

Each time I get my blood drawn, which is approximately every 3 months, I ask for the above mentioned markers to be tested. Although I had a diagnosis of PCOS for years, I have become asymptomatic due to lifestyle and nutrition changes I’ve made (including coming off of hormonal birth control). I like to keep an eye out for my androgen levels to be sure that I don’t fall back into a high PCOS status.

If you’ve been diagnosed with PCOS and question the validity of that diagnosis, ask your doctor for the mentioned blood work. To learn how to treat PCOS, stay tuned for my upcoming blog.

In this video, I explain PCOS, how to get diagnosed with it and whether or not it’s truly a lifelong diagnosis.