With a career in prenatal genetics, I understand many medical conditions related to infertility and pregnancy loss—so I was shocked to find myself diagnosed with polycystic ovarian syndrome (PCOS) at 27 years old. The common hormone condition helped explain many of the frustrating symptoms I had experienced over the years: irregular menstrual cycles, adult acne, rapid weight gain that felt impossible to work back off. It wasn’t until I tried, and failed, to get pregnant that I received an official diagnosis. While I was relieved to find that my version of PCOS is considered mild (and my body responded well to treatment that allowed me to get pregnant and birth two children), I’m amazed that a medical condition affecting 1 in 10 women of childbearing age is still relatively unknown.
At age 27, I sat in the exam room at my OB-GYN, waiting to speak about the next steps I should take to get pregnant. It had been over a year of intentional, timed intercourse, and I should have received a positive pregnancy test by now. I’d recently had an intrauterine ultrasound and bloodwork that included a deluge of tests looking at my hormone levels to see if there was any biological reason.
I’m amazed that a medical condition affecting 1 in 10 women of childbearing age is still relatively unknown.
My doctor did not mince words: “Based on your results, you almost certainly have polycystic ovarian syndrome.”
She explained that while my irregular cycles ended with a period every 26-45 days, I likely wasn’t ovulating with a viable egg. This meant that all the months of timed intercourse couldn’t have led to a pregnancy, since the egg was never making it out of my ovary. For me, and most women with PCOS, treating my infertility would focus on inducing ovulation.
I went on to learn that there’s no single test to determine whether someone has PCOS. Rather, there’s a collection of symptoms a woman may experience and the official diagnosis comes down to which set of parameters a doctor uses. Making things even more complicated, PCOS manifests on a spectrum, with some women experiencing only mild symptoms while others’ are more severe. The most common signs of PCOS are irregular periods, increases in certain hormones (androgens), and cysts on the ovaries. Other symptoms that may contribute to a diagnosis can include weight gain, excessive facial hair (hirsutism), acne, hair thinning, and dark skin patches (acanthosis nigricans). Up to 70 percent of those with PCOS also have insulin resistance and are more susceptible to developing type 2 diabetes.
Currently, we don’t know what causes PCOS. At its core, PCOS is an endocrine issue, involving a number of hormones. There are theories about the chemical pathways that produce PCOS symptoms. Namely, the hormones progesterone, gonadotropin-releasing hormone (GnRH), and luteinizing hormone (LH) usually work together before ovulation during the follicular phase of the menstrual cycle. In a normal cycle, progesterone levels relay an increase in GnRH, which signals the release of both LH and follicle stimulating hormone (FSH). With PCOS, it’s theorized that a triggering event (likely related to progesterone) causes a premature spike in GnRH, and the eggs in the ovaries don’t have time to develop enough to be released. Instead they remain within the ovary as cysts. While there is a potential genetic link, in addition to environmental factors in utero, the specific events that lead to these hormone dysfunctions are unknown.
At its core, PCOS is an endocrine issue, involving a number of hormones.
At my appointment, my doctor went over my results. My testosterone was high, as was my estrogen. Sometimes, high levels of testosterone found in women with PCOS are converted to estrogen. Because PCOS prevents ovulation, my anti-mullerian hormone (AMH), a common indicator of remaining eggs, was also increased. I didn’t have an issue with insulin regulation, per my normal A1C results. My doctor also showed me the images of my ovaries, and on the screen I saw multiple small fluid-filled sacs—the condition’s namesake cysts.
At the time, I was a bit stunned. While I certainly knew something was wrong, my anxiety around getting pregnant had been downplayed at previous visits, likely a consequence of still being in my 20s. Now I was looking at an endocrine disorder and an uncertain fertility future.
To start treatment, I got in touch with a reproductive endocrinologist, who suggested a medication—Letrozole (sometimes called Fermara). This would block some of the excess estrogen I was producing and allow my body to ovulate on its own. Estrogen starts low and increases over the first half of a normal cycle until ovulation. Consistently high estrogen levels, which are common with PCOS, prevent the brain from getting the signal that estrogen has peaked and FSH should be released (this is a similar mechanism to how hormonal birth control prevents ovulation). A few cycles of Letrozole and a dosage increase later, I ovulated and became pregnant with my now four-year-old daughter.
Treatment of PCOS is symptom-specific and depends on whether you are trying to get pregnant. In addition to Letrozole, other medications used to stimulate ovulation include Clomid and Metformin.
Perhaps this is one of the reasons we don’t talk about PCOS—our doctors don’t broach the possibility until we start trying to have babies.
For those not seeking pregnancy, hormonal birth control can help regulate cycles and mitigate symptoms like acne. Changes to lifestyle, such as increasing exercise and reducing carbohydrates, can help reduce insulin resistance and may help regulate hormone levels. It’s important to note that while many women with PCOS have higher BMIs, there are plenty of women that are not overweight at all. One of the more frustrating aspects of PCOS is how differently it can present itself. Because the symptoms spread across multiple medical specialties, it can often go misdiagnosed for years.
Perhaps this is one of the reasons we don’t talk about PCOS—our doctors don’t broach the possibility until we start trying to have babies. More likely, though, many of us struggling with infertility are doing so in silence. When my husband and I were trying to grow our family, I felt like my body was broken. I didn’t want to air out my physical issues, because they were so directly tied to my emotions. I didn’t want to cry in front of my friends, and I felt like I would be “burdening” them with my own emotional baggage. I also feared fielding the “How’s it going now?” question indefinitely.
Little did I know, there were women in my life on very similar journeys. As I started sharing my PCOS diagnosis, I found more and more women with PCOS in my own circle of friends. Beyond conceiving, we were able to commiserate on all the aspects of our health that PCOS affects, like the acne breakouts that shake our confidence or the endless doctors’ appointments where we’re constantly told to “lose some weight.”
Although I’ll likely never be rid of PCOS, I can use my experiences to help educate and connect with others. By talking about PCOS, we’re finding each other and starting to advocate for ourselves.
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