September is PCOS Awareness Month. That’s why, on September 17 at 4pm PT/7pm ET, we’re hosting a live, virtual PCOS roundtable with Dr. Jenn Conti, MD, MS, MSc and Dr. Temeka Zore, MD, FACOG. RSVP for the event.
There are many parts of the traditional healthcare system that puzzle me, particularly as they relate to the health of people with ovaries. Why isn’t there proactive screening for primary ovarian insufficiency (POI) and polycystic ovary syndrome (PCOS), which not only impact your chances of conceiving without fertility treatments, but also your overall health? If you happen to have infertility coverage, why is it that you have to prove you've been trying to conceive for up to a year, no matter family history, fertility plans, or hormones, before you can activate that coverage? What does that mean for same-sex couples?
We can’t cover everything in a single blog post, but there is one issue I want to dive into today: PCOS. It’s also PCOS Awareness Month, so let’s jump in.
What exactly is PCOS?
Maybe you’re wondering what PCOS is — I didn’t know what it was until I was diagnosed with it just a few years ago. And given how relatively unknown PCOS is, you might assume it doesn’t affect many people… right? But 1 in 10 people with ovaries have had PCOS diagnosed or are impacted by the condition. 1 in 10!
Let’s put this in perspective. About 4 in 10 people with ovaries get recurrent yeast infections, 1 in 8 are diagnosed with breast cancer, and almost 1 in 10 are diagnosed with depression. Even though PCOS is almost (or equally) as common as these other conditions, it’s talked about a lot less. Many people don’t even find out that they have PCOS until after they’re actively trying to conceive, struggle, and meet with a fertility specialist.
Research estimates that about 70% of people with PCOS are either misdiagnosed or undiagnosed. Of those who do get diagnosed, one-third report waiting over two years and see more than three healthcare providers for that diagnosis. (Gaps in research likely play a role in the lack of awareness on all sides, and the fact that we don’t yet know the exact cause of PCOS.)
Common features and symptoms of PCOS
PCOS is a hormonal disorder marked by two or more of the following features: high levels of “male” sex hormones (like testosterone), a large number of immature ovarian follicles (the fluid-filled sacs that develop and release eggs), and anovulatory (a lack of ovulation) menstrual cycles.
While anti-Mullerian hormone (aka AMH) isn’t part of the official criteria (more on this later) used to diagnose PCOS, several studies show that people with PCOS, in addition to high levels of testosterone, have significantly higher levels of AMH than those without it. (You can read the studies here, here, here, and here.)
Symptoms of PCOS can include:
- Hirsutism, or excess hair growth (including chest, back, arm, armpit, and facial hair)
- Oily skin or acne
According to the American Academy of Family Physicians (AAFP), it’s common for people with PCOS to also have metabolic syndrome — defined by the Mayo Clinic as a “cluster of conditions that occur together,” leading to an increased risk of type 2 diabetes, heart disease, and stroke — and higher body-fat percentages.
PCOS is one of the leading causes of infertility. Irregular cycles (a hallmark of PCOS) make it nearly impossible to predict the timing of ovulation, if ovulation happens at all. That said, PCOS and its symptoms are treatable with birth control pills or medications like clomiphene (for ovulation) and metformin (for higher blood sugar levels). Changes in nutrition and exercise levels are also sometimes recommended. Doctors often use hormone blood tests (AMH and testosterone) and transvaginal ultrasounds to get the full picture of someone’s chances for PCOS before diagnosing or treating the disorder.
My PCOS diagnosis story
I first found out I had PCOS when I set out to get my own fertility hormones tested before starting Modern Fertility, and the experience was frustrating. I’ve been passionate about healthcare since as early as I can remember, so I was shocked that I’d never heard of PCOS — let alone that it might be affecting me. I’ve always had irregular periods and I have some symptoms of increased androgens (another name for “male” sex hormones), but I don’t have all of the symptoms outlined in the industry-standard Rotterdam criteria, which healthcare providers often use to diagnose PCOS.
The first physician who diagnosed me with PCOS used a transvaginal ultrasound as part of my fertility hormone testing. After seeing the “string of pearls” (how clusters of underdeveloped ovarian follicles often appear on an ultrasound) on my ovaries, the physician told me that I would never be able to get pregnant naturally, but I could come back to the clinic so they could help with treatments (like in-vitro fertilization, or IVF) when I was ready to start trying. To be clear: People with PCOS can conceive naturally, though it may be more difficult — and fertility treatments are always highly personal decisions.
I was devastated. Despite learning about the nuances of women’s health for years, I felt like this was a personal failure — how did I miss this? But after a lot of research and conversations with many more physicians, I was able to get past this and understand that there was nothing “wrong” with me — I just needed to plan ahead and map certain considerations into my broader reproductive health view.
Most of my anxiety around my PCOS diagnosis was simply because of how little I knew about it. Information about PCOS — and all other reproductive health conditions — is information we all deserve much earlier in life.
What I’ve learned from my own PCOS research
In my own research into all things PCOS, I learned a few important facts about the disorder:
- Birth control pills are often used to manage PCOS. This is because they keep the ovaries at a hormonal standstill and produce cyclical bleeding (meaning contraception and monthly confirmation that you’re not pregnant). It masks symptoms, but it doesn’t resolve them. (In some cases, if you haven’t been diagnosed with PCOS and are on hormonal birth for other reasons, you might not experience PCOS symptoms until you’re refamiliarizing yourself with your natural menstrual cycle.)
- Not ovulating or getting periods for prolonged time frames because of a condition like PCOS (without the use of hormonal birth control, which often includes a synthetic progesterone) can cause changes in the lining of the uterus that, if untreated, risk turning into endometrial cancer (or cancer of the uterine lining). This is a great reason to see a doctor if your periods are very unpredictable or infrequent.
- There are different phenotypes (observable traits) of PCOS. One 2019 study found that the majority of people with PCOS have all three of the symptoms in the Rotterdam criteria, but others present with various combinations of just two out of three. Similarly, while high body-fat percentage is common among those with PCOS, some people instead have the “lean” phenotype (and require different treatment). This means that PCOS doesn’t look the same in all people, which could contribute to delays in diagnosis, management, and treatment.
- People with PCOS are over six times more likely to have type 2 diabetes. Many doctors recommend that those who are diagnosed with PCOS get tested for type 2 diabetes — and, if necessary, treated for insulin resistance, which may alleviate some of the symptoms of PCOS.
PCOS is so common, and our health is far too important, for there to be such ambiguity about it. 1 in 10 people with ovaries have PCOS. Let’s give this disorder — and the people who live with it — the attention it deserves.