September is PCOS Awareness Month, and while each year there are social media campaigns and efforts to increase awareness for this common hormonal disorder, it still often goes undiagnosed. PCOS stands for polycystic ovarian syndrome, and even its name is a misnomer, only adding to the confusion surrounding this widely misunderstood disorder. Approximately one in ten women have PCOS but it’s estimated that up to 50% of women with the disorder go undiagnosed.
How is PCOS diagnosed?
The diagnosis of PCOS is not black and white. You cannot do a single blood or imaging test to conclude that someone has PCOS. Instead, it’s diagnosed based on a collection of signs and symptoms related to hormonal changes in the body. The textbook diagnosis of PCOS is a combination of signs and symptoms associated with elevated androgens (male hormones) like acne, hirsutism (extra hair growth), high testosterone levels, irregular menses, and PCOS-appearing ovaries. Three different ‘standard definitions’ exist, but the most commonly referenced diagnostic tool is the Rotterdam criteria from 2003. Experts from around the world came together to review the evidence and decided that in order to diagnose someone with PCOS, the patient had to have two out of three of the following criteria:
- Oligoovulation or anovulation – meaning irregular or no ovulation, respectively, both of which can present with irregular menses.
- Excess androgen activity – meaning high male hormone levels, which can be seen with blood tests or clinically with acne and hirsutism (extra hair growth).
- Polycystic-appearing ovaries on ultrasound – meaning ovaries with lots of follicles (fluid-filled structures that contain eggs).
That being said, PCOS is a spectrum, and there are many women who have PCOS who do not fit the typical textbook patient profile, which includes insulin resistance, irregular menses, extra hair growth, acne, and being overweight. Unfortunately, many women go undiagnosed because they have some but not all of the symptoms.
Why PCOS is a misnomer
Polycystic ovarian syndrome includes the word ‘cyst,’ which has a negative connotation for most people. Patients often get very nervous when they hear this diagnosis and imagine their ovaries filled with huge, dangerous cysts and worry about the consequences. But cyst in ‘PCOS’ is referencing the many follicles that are in the ovaries in women with this hormonal condition. The word ‘cyst’ just means a fluid-filled structure in the body, and follicles are the normal, fluid-filled structures in ovaries that contain eggs. We can see follicles on ultrasound, and women with PCOS often have more antral (visible) follicles on ultrasound than women without PCOS. A transvaginal ultrasound can be used to do an antral follicle count (a count of the number of resting follicles on the ovaries). A typical antral follicle count is 10-15 follicles total, including the follicles on both ovaries. Someone with PCOS will usually have a higher than normal antral follicle count of 20-30+, so PCOS is really just poly-follicle syndrome or poly-egg syndrome.
I tell my patients they have ‘too much of a good thing’ – they have so many eggs fighting to ovulate that their hormones get confused and can’t decide which egg to release. This explains why they don’t ovulate regularly and therefore do not have regular menstrual cycles. Doctors should really consider re-naming PCOS or at least describe this condition and explain the name better to patients.
Why is PCOS often mis-diagnosed?
Many women have symptoms of PCOS for years but go undiagnosed by medical providers.
There are many reasons why women go undiagnosed, including lack of awareness and lack of knowledge.
There are two common scenarios I see in my practice when it comes to the misdiagnosis of PCOS:
- Atypical PCOS patients: PCOS can present itself in many ways, and many women are not the typical PCOS patient. The diagnosis of PCOS is a collection of signs and symptoms, and there is no single test to diagnose it easily. The condition may not be on the radar for the provider you are seeing, and you may need to ask, “Could my symptoms be PCOS?”
- Patients on hormonal birth control: Hormonal birth control can mask the signs of PCOS, and women do not realize they have it until they stop hormonal birth control to try to conceive.
A typical patient I see in my infertility clinic is someone who states, “I’ve had regular periods my whole life, but when I started trying for a baby, they got very unpredictable. I think I’m stressed.”
When we delve further, the patient had been on birth control pills for years (often started because of irregular menses = one symptom of PCOS). Birth control pills give women regular menstrual cycles that are not dependent on their ovaries ovulating (no ovulation = no pregnancy = birth control). BUT women get regular periods from the hormones in the birth control pills that build up a uterine lining and shed it every month, and when they stop the birth control pills, they stop having regular periods (or any periods). Women often blame birth control pills for causing irregular cycles and worry that taking them for years has harmed their ability to conceive. In reality, the birth control pills were masking a hormonal imbalance, most likely from PCOS. So, if you’re having irregular menstrual cycles, ask if it might be from PCOS. PCOS is often a lifelong condition, so some providers who see women in their 30s with irregular menses do not think of it as a cause. Ask!
What are the symptoms of PCOS?
Here are some common symptoms of PCOS:
- Irregular periods or no periods at all (amenorrhea)
- Excessive hair growth (hirsutism) – usually on the face, chin, chest, or back
- Difficulty getting pregnant (because of irregular ovulation or failure to ovulate)
- Gaining weight without changing exercise or diet habits or difficulty losing weight when trying a healthier lifestyle
- Thinning hair and hair loss from the head
- Oily skin or acne
PCOS is common and often goes unrecognized. Increasing awareness and education about this common hormonal condition can help more women get the care they need, as well as helping those who are struggling to conceive. If you have any of these symptoms or questions about your health, see a medical provider and ask questions. Be an advocate for yourself!
Other resources for more information on PCOS: