What I Wish I Knew About PCOS Before My Diagnosis

Though the initial signs are often missed, you can find hope and feel better.

PCOS


When I was diagnosed with polycystic ovarian syndrome (PCOS), I had already been off birth control for 16 months without conceiving. Worse, the revelation that both ovaries were polycystic came not from my doctor, but from my ultrasound report, which I read on the app connected to my OBGYN’s office. It was only after I asked her about it directly that she confirmed: based on the polycystic ovaries, plus my irregular periods, lack of ovulation and acne, I had PCOS. She hadn’t told me, she said, because our course of action remained the same: I would begin fertility treatment. 

I’m not alone in my unsettling lack of diagnosis: Up to 75% of women with PCOS go undiagnosed “due to variability of patient presentation and lack of provider knowledge.” If this statistic seems outrageous, that’s because it is. We want to trust our doctors to recognize symptoms that we don’t. We want to trust them to give us answers. But ultimately, we are the experts on our bodies and no one cares more about our health than we do. That sometimes means taking charge and advocating for ourselves. 

Here’s what I wish I knew about PCOS at the start of my journey:

You’ve likely had the symptoms for years, maybe even decades

PCOS is the most common endocrine disorder among women of reproductive age and the leading cause of female infertility. Symptoms often begin around the time of your first period. A classic symptom of PCOS is irregular periods — fewer than nine per year, more than 35 days in between periods or abnormally heavy periods. Irregular periods may also indicate a lack of ovulation, leading to infertility. 

Women with PCOS often have excess androgen levels, causing excess body hair (hirsutism), acne and sometimes male pattern baldness. Weight gain and insulin resistance are two symptoms that frequently go hand in hand: one exacerbates the other. 

I never had regular periods. As a teenager, I was awed by friends who could predict their cycle to the day; it seemed like magic. I had to rely on the increasing severity of my PMS symptoms, though by the time I was diagnosed, I experienced them for up to two weeks leading up to my period. My periods also varied wildly in duration and heaviness. 

And the acne: as a teenager, I did two rounds of the acne medication Accutane, a drug so powerful it required monthly blood tests to monitor the liver. After that, I experienced times of clearness and times of severe breakouts, which were usually relegated to my cheeks and jawline. The times of clearness coincided with my use of birth control, though I didn’t realize that until much later. 

By the time I was diagnosed in 2017, I realized my skin and body had been trying to tell me about PCOS for 20 years. Don’t ignore your symptoms — and don’t let a doctor ignore them, either. Speak up, ask questions, and if you feel disregarded, change doctors. 

The root cause of PCOS is often insulin resistance — even if you’re not overweight

Though a majority of sources say the cause of PCOS is unknown, the Mayo Clinic lists insulin resistance as the first factor that might underlie the diagnosis. Insulin is the hormone that allows your body to use sugar as its main energy source. If your cells become insulin resistant, your blood sugar levels can rise, prompting the production of more insulin and trapping you in a nasty cycle. 

Insulin resistance might cause excess androgens, the hormone that can lead to acne, hirsutism and difficulty ovulating. Insulin resistance may also lead to diabetes and pre-diabetes, and is traditionally linked to obesity. But you can have insulin resistance — and therefore PCOS — even if you are lean. This is the kind of “variability in patient presentation” that can lead to a lack of diagnosis, as it did for me.

Other factors that might contribute to PCOS include low-grade inflammation, which can stimulate polycystic ovaries to produce androgens, and heredity.

The key to your diagnosis may be in your blood — so ask for blood work

By now, you may suspect that PCOS is behind a host of frustrating symptoms. But blood work can help confirm it — and give you a baseline from which to measure your progress. 

A hemoglobin A1C test measures your average blood sugar in the last 2-3 months. The higher the percentage, the more at-risk you are for diabetes and ensuing complications. A normal A1C level is below 5.7%. The pre-diabetes range is between 5.7 and 6.4%, and an A1C level of above 6.5% on two separate occasions confirms a diagnosis of diabetes. 

My A1C level was 5.5%, just below the pre-diabetes range. My OBGYN was not concerned, particularly because I was not overweight, but when I consulted functional medicine doctor Tom Sult, he said these results, coupled with my symptoms, did suggest early insulin resistance. 

Additionally, my DHEA-S, a steroid hormone produced mainly by the adrenal cortex, was abnormally high, as were free and total testosterone. My ratio of LH to FSH, hormones integral to ovulation, was also abnormal. 

According to the University of Virginia Health System’s Center for Research in Reproduction, “Women with PCOS often have high levels of LH secretion. High levels of LH contribute to the high levels of androgens (male hormones such as testosterone), and this along with low levels of FSH contributes to poor egg development and an inability to ovulate.”

If you suspect you have PCOS, ask your doctor to test your hemoglobin A1C and your LH/FSH ratio. Together, they are two important clues that can give you a place to start your healing process. 

PCOS is treatable — and medication is only one option

When I was told I had only a 2% chance of conceiving naturally and there was nothing I could do to treat PCOS itself, it was hard not to feel hopeless. But there is hope. 

If you are overweight, your doctor may advise you to lose 10% of your body weight; this alone, while challenging, may be enough to reverse many of the symptoms of PCOS, including infertility. If weight loss is not an appropriate option, there are several medications considered the first line of treatment. If you are not trying to conceive, birth control can regulate your cycle and correct the hormonal imbalance. If you are trying to conceive, Clomid or Letrozole might be prescribed to stimulate follicle production and induce ovulation. Metformin is often used to improve insulin resistance.

I tried Clomid, Letrozole and Metformin, and while they work for many people — and are absolutely worth trying — they did not ultimately work for me. What did work? A ketogenic diet. Lowering my carbohydrate intake to between 20-50 grams per day sharpened my insulin sensitivity. Within five months, my skin was clear, my periods were regular — and I conceived naturally. If your hemoglobin A1C indicates that you’re in the diabetic or pre-diabetic range, a ketogenic diet might be an important approach to explore. You could also try a modest reduction in carbohydrates or a low-glycemic index diet.

For a less dramatic dietary change, a study of eight normal weight women with PCOS showed that when they consumed half their daily calories in the morning, insulin levels lowered by 8% and testosterone levels by 50% in three months. So try having a larger breakfast and more modest lunch and dinner. 

PCOS can wreak havoc on the emotions. Reduce stress by taking an evening walk, practicing yoga, listening to a mindfulness app, or simply sitting quietly, paying attention to your breath. Do what relaxes you. (Reading in the bath is my go-to.) Studies show that aside from the obvious feel-good benefits, lowering stress also lowers inflammatory markers in the body — and inflammation may contribute to PCOS. 

Remember: Your body — your beautiful body that is trying its best — is a whole system, and we need to treat it that way in order to heal.

There are online resources and communities dedicated to helping you thrive with PCOS.

For more information, or to join communities who understand, I recommend the PCOS Awareness Association and PCOS Diva. PCOS Diva offers diet plans, podcasts, expert interviews and more, which were particularly useful in finding my footing after my diagnosis. 

If I could tell my earlier self, and you, one thing about living with PCOS, it’s this: You can feel better. There is hope.

In episode one of Chasing the Cure Hannah, a former student athlete, sought a conclusive diagnosis after gaining more than 90 pounds in the span of one year. She was advised to look into a PCOS diagnosis. Watch below:

HANNAH'S STORY WAS FIRST FEATURED ON EPISODE ONE OF CHASING THE CURE



Katie Gutierrez lives in San Antonio, Texas with her husband and daughter. Her writing has appeared in The Washington Post, Catapult, Lit Hub and more. Find her on Twitter @katie_gutz