Have you been wondering if you could possibly have PCOS? With an increase in PCOS awareness and education, more and more folks are recognizing symptoms like irregular periods, acne, hirsutism, and hair loss, asking their doctor to be screened for PCOS.
It can be frustrating if you think you may have PCOS and your concerns are dismissed. On today’s episode of the podcast, Sam is discussing how PCOS is diagnosed so that you can have more information and a better understanding of the diagnostic process if you do pursue a diagnosis with your doctor.
Disclaimer: Sam is not a medical doctor and diagnosing PCOS is outside of her scope of practice. This information is not medical advice. It is intended to be used as education to facilitate discussions between you and your healthcare provider.
Symptoms of PCOS
Symptoms of PCOS Include:
- Irregular or missing periods
- Acne, especially cystic acne along the jaw line
- Hirsutism (excessive hair growth)
- Hair thinning or hair loss (called alopecia)
- Infertility
- Polycystic ovaries on an ultrasound
PCOS is a Diagnosis of Exclusion
Sam begins the episode with a reminder that PCOS is a diagnosis of exclusion, meaning that other medical conditions with symptoms that overlap with PCOS usually need to be ruled out first prior to being diagnosed with PCOS.
Just because you have a missing period or unwanted hair growth doesn’t automatically mean that you have PCOS. Other conditions should be ruled out first.
Common conditions that have symptoms that overlap with PCOS include:
- Thyroid issues
- Hyperprolactinemia (high prolactin levels)
- Congenital adrenal hyperplasia
- Cushing’s syndrome
- Hypothalamic amenorrhea
If you already have a PCOS diagnosis, don’t freak out that these other conditions weren’t properly ruled out. Your doctor may have screened you for them or checked your labs (like a prolactin level or your thyroid labs) without you even realizing it.
However, if you did receive a diagnosis of PCOS and you’re feeling like things aren’t quite adding up then it’s worth asking your doctor about these other conditions.
Diagnosing PCOS: The 3 Pieces of Criteria
Sam then goes on to share the three different pieces of diagnostic criteria and the specifics of each one.
This information is based on the Rotterdam Criteria for Diagnosing PCOS, and was updated in the 2023 International Evidence-Based Guidelines for the Assessment and Managing PCOS.
According to the guidelines, you must meet at least 2 of the 3 pieces of criteria:
- Irregular cycles and ovulatory dysfunction
- Elevated androgens
- Polycystic ovaries
Each of these pieces of criteria have some specifics that you should know about and Sam breaks them down in the episode:
PCOS Diagnostic Criteria 1: Irregular Menstrual Cycles and Ovulatory Dysfunction
Here is what the evidence-based guidelines have defined as irregular cycles. Please note a cycle starts on day 1 of your bleed:
- Irregular menstrual cycles are normal in the first year someone starts their period as part of their transition into puberty
- A cycle that lasts for >90 days
- Within the first 1-3 years after starting your period, a cycle is <21 days or >45 day
- Cycles <21 days or >35 days or < 8 cycles per year
It is also important to note that technically, ovulatory dysfunction can occur even if you’re having a regular cycle. Your doctor may order a serum progesterone level to confirm whether you’re ovulating normally.
PCOS Diagnostic Criteria 2: Elevated Androgens
Androgens are male sex hormones that can occur in higher amounts with PCOS. Since androgens can be kind of tricky to test with labs, they can be diagnosed with either labs or physical symptoms.
Diagnosing Elevated Androgens with Labs
According to the newest PCOS guidelines, free testosterone and total testosterone can be checked first to diagnose PCOS. Your doctor may also estimate your free testosterone by the calculated free androgen index. Please note that testosterone labs are the most accurate in the morning on the first day of your cycle.
If testosterone levels are not elevated, your doctor could also order androstenedione and dehydroepiandrosterone sulfate (DHEAS) labs, however they have poorer specificity and DHEAS decreases with age anyway.
Androgen labs are most useful when someone has no physical signs of elevated androgens.
Diagnosing Elevated Androgens with Physical Symptoms
The primary physical symptom that can be used to diagnose elevated androgens is hirsutism, or excessive hair growth.
This hair growth commonly occurs on the face, chest, and back. Hirsutism is determined by a modified Ferrimen-Gallwey score of 4-6. Ethnicity and whether you have used any hair removal treatments should also be taken into account.
PCOS Diagnostic Criteria 3: Polycystic Ovaries
This final piece of diagnostic criteria for PCOS is checking the ovaries to see if they’re polycystic. This can be evaluated in one of two ways.
The first is by using the type of ultrasound that looks inside of you (a transvaginal ultrasound), the following would meet this diagnostic criteria in adults:
- Follicles per ovary, ovarian volume, and follicle numbers per cross-section are all factors that are looked at on an ultrasound.
- The number of follicles per ovary is the most effect marker to take a look at
- At least 20 follicles in one ovary meets this criteria
- An ovarian volume > 10 mL per follicle or the follicle number per section >10 in at least one ovary may also be used.
An ultrasound is not recommended in adolescents because there’s no criteria to define polycystic ovaries until adulthood.
Also, the type of “cysts” that fall under this category are NOT the same type of cysts that burst, cause pain, or need to be surgically removed (like dermoid cysts or hemorrhagic cysts).
The second is by looking at a serum anti-mullerian hormone (AMH) lab.
Diagnosing “Lean” PCOS
Sam strongly dislikes the term “lean” PCOS as it is not only stigmatizing but also misleading. As you can see in the criteria above, weight is not part of diagnosing PCOS.
Misdiagnosing PCOS
Sam ends the episode by discussing the two common medical conditions where she has seen her clients be misdiagnosed with PCOS: Cushing’s syndrome or hypothalamic amenorrhea (HA).
She especially discusses how the diagnosis of HA can be missed because labs can sometimes be normal and preoccupation with nutrition and exercise is often praised in the healthcare community without evaluating whether it might be putting too much stress on the body.
In Summary: Diagnosing PCOS
Hopefully this episode clears up some of the confusion around whether or not you have PCOS. As you can see by the criteria, you can be diagnosed without labs or possibly without an ultrasound depending on which pieces of criteria you meet.
