Top Ten Things I Wish Everyone Knew about PCOS

A typical polcystic ovary on the right, with a whole bunch of growing follicles! (Follicles are the fluid-filled sacs inside of which eggs develop). (Photo Credit: Bayer Research Magazine)

Gosh, it’s been a minute since I blogged. I’ve been a bit busy collaborating with other folks (talking about egg donation, fertility in your 20s & 30s, and quality of life with PCOS), but TODAY is PCOS Advocacy Day, so I had to come back to my own blog to try put this together to delve into PCOS, or polycystic ovary syndrome. So, without further ado, the “Top Ten Things I Wish Everyone Knew about PCOS”:

1. The diagnosis: There are multiple different criteria to diagnose PCOS. The most broad is the Rotterdam criteria, in which you have at least 2 out of 3 things (irregular or absent ovulation, symptoms or labwork to show high androgen levels, and polycystic-appearing ovaries). The older NIH criteria requires the first two, and is a stricter phenotype (more the “typical” PCOS patient, and fewer women meet those criteria). Nowadays, we usually use Rotterdam criteria for clinical management because at least some components of the syndrome apply to all women, but it is really helpful to know what criteria were used to give you the diagnosis! Sometimes people get this diagnosis because they had an ovarian cyst, or an elevated LH/FSH ratio, but these are not part of the criteria!
2. You could ovulate on your own! I’ve heard from many women that when they were given the diagnosis, they were told they’d never get pregnant (makes my blood boil!). Indeed, the one study on the matter did show that teens with PCOS have higher fertility stress. However, it is important to know that women with PCOS can ovulate spontaneously, and so if you’re not looking for pregnancy, you still need to use contraception. Because, if you might ovulate on your own…
3. You could get pregnant on your own also! If you are TTC, an honest lifestyle evaluation will help you assess whether a modest weight loss might help your cycle become regular again (yes, this can happen!). More long-term data is needed, but treatment with inositols may help your cycle self-regulate also. I don’t recommend women to just wait for things to improve, but if you are young and can spend a few months improving your health (weight, sugar control, diet and exercise habits) before pregnancy, that will definitely improve your fertility and pregnancy experience, by decreasing risk for diabetes, excessive weight gain, Cesarean section, etc.!
4. But, there are good fertility treatments. For most women, the first line should now be a trial of letrozole — an oral medication that induces ovulation and is the best choice for women with PCOS. I would strongly recommend consulting a fertility specialist to talk through the full fertility workup, and how to pursue a monitored letrozole cycle (confirming the medication worked, i.e. — a follicle developed, as seen on ultrasound!) with timed intercourse or intrauterine insemination.
5. Is there a cure? Well no doubt this recent article is making a lot of women think so! But as I address here, that’s probably an optimistic conclusion to reach right now. I am hopeful a cure will be discovered in our lifetime, but for now, the long-term management of PCOS symptoms is the most important approach to treatment. A healthy lifestyle (diet, exercise, maybe ancillary treatments I discuss below) can help reduce those symptoms, in conjunction with medical treatment. I know how frustrating it is, because…
6. PCOS affects quality of life. As I discuss in this podcast with PCOS Diva Amy Medling (whom I love!), a validated quality of life questionnaire (the PCOSQ) helps remind me that comprehensive PCOS management includes (at least) discussion of five domains: weight, infertility, irregular periods, hirsutism and mood. Which of these is most pressing to you will likely change over time, and your doctor needs to be open to discussing any or all of them!
7. What if I hate birth control pills?? Although OCPs are the most common method of managing the hormonal dysregulation in PCOS, some women feel really horrible. There are a few key alternative treatments, including holistic lifestyle management (see Amy’s website for an example!), supplements (inositols being primary), and acupuncture. I’ve helped patients come off of mood-altering medications and OCPs and into a more natural approach via a collaborative approach using these tools. It can work!
8. Maintaining good health cannot be underestimated! Gosh, it is so hard to overhaul your diet, get regular exercise, and find time for regularly taking supplements or going to acupuncture. It can be daunting for many women with PCOS, and I totally sympathize. But, though I take care of many young women, it’s truly important to remember that all of these changes are investments in YOU. Not just because of the PCOS, but because it’s good for your heart, and your bones, and your gut, and truly, your overall health.
9. The metabolic risks are real. Though not every women with PCOS gets cardiometabolic disease, the risks are elevated, even if you’re thin. The body can develop a resistance to insulin, the hormone that deals with the sugar we ingest in our diet, making it easier to gain weight & harder to lose weight. Over time, this can cause diabetes (in pregnancy and then type II), heart disease and so on. I have shocked many a 20-something with a new pre-diabetes or diabetes diagnosis, so the time to take action is NOW! If your child or loved one has PCOS, help them establish a healthy lifestyle as early as possible…it will help you too! But I think it’s especially powerful because…
10. If you take good care of yourself, you likely won’t have long-term repercussions. As I reviewed in this article, the data suggests that by the time we hit menopause, the risk of actual cardiovascular morbidity or mortality is more predicated on having gotten diabetes or heart disease along the way than the PCOS diagnosis itself. My message is:

“If you can take good care of your health, and either avoid or keep diagnoses like diabetes, hypertension or heart disease well-controlled, by the time you hit the post-menopausal years, your PCOS will be irrelevant! How great will it feel to finally kick that diagnosis to the curb?!?” — Rashmi Kudesia, MD

So. I hope that is a helpful top 10 list! Anything you would add? And again, happy PCOS Advocacy Day!