5 Tips for Navigating a PCOS Diagnosis
PCOS can be tricky to diagnose
PCOS, polycystic ovarian syndrome, is both commonly misdiagnosed and it's also common for a diagnosis to be missed. This makes PCOS a frustrating reality to navigate from the very beginning.
Polycystic ovarian syndrome is a group of symptoms including weight gain, male-pattern baldness, acne, irregular absent menstrual cycles and excess body and facial hair. The criteria by which PCOS is typically diagnosed, the Rotterdam Criteria, has been in place since 2003 and here it is:
Two or more of the following have to first be met to make the diagnosis:
Oligo-ovulation or anovulation (irregular or missing periods) and specifically less than 10 cycles per year or cycles over 35 days or under 21 days in length
Hyperandrogenism diagnosed by physical symptoms or biochemical evidence in lab testing
Polycystic ovaries visible on ultrasound and specifically over 12 follicles with a size of 2-9 mm or ovarian volume > 10 mL
Additionally, other possible conditions must be ruled out including: thyroid disorders, hypothalamic amenorrhea, hyperprolactinemia, Cushing's syndrome, non-classical congenital adrenal hyperplasia and more.
This is where the waters begin to get murky: excluding other conditions
For example, thyroid disease and hypothyroidism can present with cysts of a different type in the ovaries, insulin resistance, weight gain and irregular menstrual cycles. High prolactin levels can present with hair loss and anovulation. Hypothalamic amenorrhea can, as the name describes, primarily present with irregular menstrual cycles. And then there’s non-classic congenital adrenal hyperplasia, which can present with amenorrhea and excess androgens.
As you might imagine, both adolescence and perimenopause make a PCOS diagnosis particularly challenging. The first of the Rotterdam Criteria should carry a big asterisk by it. Menstrual irregularities are the norm, and the ovaries may appear otherwise polycystic for many people during this phase of life.
The list of confounding factors goes on! If you are currently taking hormonal contraceptives and you’re uncertain whether your physical signs of hyperandrogenism, excess facial and excess body hair, are “normal” or not, you might be out of luck!
PCOS is a complex condition and getting a clear diagnosis can be dizzying.
Here are 5 tips to help when navigating PCOS uncertainty
Advocate for key lab testing
If you’re diagnosed solely based on your physical symptoms, advocate for lab testing from your doctor. Yes, this will help move towards an accurate diagnosis, and more importantly, it helps to steer the direction of how to best support you, whether it’s PCOS or not. I certainly recommend advocating for the following testing and reviewing with a functional approach.
In addition to testing outlined in the Rotterdam Criteria, I recommend the following tests:
HbA1c, fasting glucose and fasting insulin are also helpful to assess insulin resistance. This contributes to many PCOS diagnoses as there’s a perpetuating vicious cycle between insulin resistance and hyperandrogenemia. Aside from PCOS, early intervention of insulin resistance is critical to avoid diabetes and metabolic syndrome.
Vitamin D (25-hydroxy vitamin D) is not a diagnostic criteria for PCOS but assessing your levels could be a critical data point. There’s a correlation between PCOS symptoms and vitamin D deficiency and correcting with sunlight and/or supplementation is an important piece of the puzzle.
Thyroid testing serves to pinpoint or rule out possible thyroid disorders since hypothyroidism both mimics PCOS and worsens PCOS.
Question hormonal birth control
Hormonal birth control may make sense for some people with specific circumstances; however, because the use of hormonal birth control neglects the root cause of PCOS symptoms, it’s not a solution. Rather, it’s the metaphorical equivalent of locking PCOS in a closet. In fact, PCOS typically worsens while it’s ignored if root-cause factors are not addressed. If hormonal birth control is recommended by your doctor, ensure you are informed on why it’s recommended for you specifically, the side effects and risks, and any possible alternative options.
Don’t force weight loss
Weight gain is a key symptom for about half of people with PCOS. While it can contribute to exacerbating PCOS, it’s neither the root cause nor a feature of every person with PCOS. Simply eating less and/or exercising more is not only typically ineffective due to PCOS’s complex endocrine, metabolic, psychological and possible autoimmune nature, these strategies may make matters worse. First things first, find out if you’re producing excess androgens and/or excess insulin. This information provides key insight to sustainable weight loss.
Support your mental health
Make your mental health a priority! There is a significant correlation between depression and/or anxiety and PCOS. Mood disturbance may be attributed to changes in cortisol, excess androgens on top of the stress of having physical symptoms themselves. Nutrition and lifestyle changes can be therapeutic for mental health, as well as acupuncture and professional counseling.
Seek nutrition and lifestyle counseling
PCOS responds well to changes in your diet and lifestyle, as do insulin resistance, hyperandrogenism and irregular menstrual cycles. While you may not yet have a satisfying PCOS or definitely-not-PCOS diagnosis, you’re likely very well aware of the symptoms giving you trouble. A nutritionist who takes a root-cause approach and who can personally tailor your recommendations can help address your concerns. In particular, if you’re pursuing a diagnosis because your ultimate goal is pregnancy, I highly recommend seeking nutrition and lifestyle counseling sooner rather than later. Contact me for a free consultation if you're interested in diving in deeper.
