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1 in 10: Let’s put PCOS in the spotlight

There are many parts of the traditional healthcare system that puzzle me, particularly as they relate to women’s health. Why isn’t there proactive screening for Primary Ovarian Insufficiency (POI) and Polycystic Ovary Syndrome (PCOS), which not only impact your chances of conceiving naturally, but your overall health? If you happen to have infertility coverage, why is that you have to prove you've been trying to conceive for about a year, no matter your age, family history, or hormones, before you can activate that coverage? What does that mean for same sex couples?

While I can’t get into all of these today, I do want to dive into one issue: PCOS. September is PCOS Awareness Month, and the Modern Fertility team never passes up an opportunity to help women access clinically sound, reproductive health information. So we’re hosting an online, nationwide PCOS meet-up with Dr. Sharon Briggs from Modern Fertility on Tuesday, September 17th. This is your chance to learn about the condition, find out when (and how) to talk to your doctor, and get your questions answered

Women ask me all the time about PCOS, so if you’re wondering, you are not alone. And if PCOS is so unknown, you might assume that it doesn’t affect many women, right? But it impacts 1 in 10 women. 1 in 10! Why don’t we hear more about it?

Let’s put this in perspective. About 1 in 12 women get migraines, 1 in 11 have ADHD, 1 in 10 are left-handed, and 1 in 12 have asthma. So why is PCOS such a question mark, when it impacts roughly the same number of women—if not more?

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PCOS is a condition where women have a hormonal imbalance (often significantly higher levels of Testosterone or Anti-Mullerian Hormone (AMH)) that leads to irregular ovulation and menstrual cycles. Symptoms of PCOS can include irregular or absent periods, cyst-like growths on the ovaries (hence the name), excess hair growth on your face, chest, back and arms, unusual weight gain, and infertility. In fact, PCOS is one of the leading causes of infertility because it’s nearly impossible to predict the timing of ovulation, if ovulation happens at all. That said, it is definitely treatable. Doctors often use hormone testing (AMH and Testosterone) to get a more full picture of PCOS.

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 have been passionate about healthcare since as early as I can remember, so I was shocked that PCOS had never been mentioned to me. My periods have always been irregular and I have some symptoms of increased androgens, but I don’t have all of the symptoms outlined in the industry-standard Rotterdam criteria, which relies on symptoms to diagnose PCOS. The first physician that diagnosed me with PCOS used a transvaginal ultrasound as part of my fertility hormone testing. After seeing ovarian cysts, 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. To be clear: people with PCOS can conceive naturally, though it may be significantly more difficult, and fertility treatments are highly personal decisions.

I was devastated. Despite focusing on the nuances of women’s health for decades, I felt like this was a personal failure––how did I miss it? But after a lot of research and conversations with many more physicians, I was able to learn and accept that there was nothing “wrong” with me—I just needed to plan ahead and map certain considerations into my broader reproductive health view. Many women don’t find out that they have PCOS until they are actively trying to conceive, struggle, and then set out to get their fertility hormones tested. In fact, research estimates that about 70% of women with PCOS are either misdiagnosed or undiagnosed. We deserve this information, and we deserve it much earlier in life—full stop.

Here are some facts about PCOS, which I learned along the way:

  • 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 doesn’t resolve them. If you are on hormonal birth control, you may go off of it and not know you have PCOS until you are trying to conceive without the right expectations.
  • When women don't ovulate or don’t get their periods for prolonged time frames, their high estrogen remains unbalanced by progesterone, which only goes up after ovulation. This can cause changes in the uterine lining that, if untreated, risk turning into uterine cancer. This is a great reason to see a doctor if your periods are very unpredictable or infrequent.
  • There are different phenotypes of PCOS. While about 54% of women with PCOS meet all three of the symptoms in the Rotterdam criteria, the remaining 46% present with a mosaic of symptoms. This means that PCOS doesn’t look the same in all women, which may contribute to delays in diagnosis, management, and treatment.
  • Women with PCOS are over six times as likely to have type 2 diabetes. Many doctors recommend that women who are diagnosed with PCOS get tested (and, if necessary, treated) for insulin resistance, which may help alleviate some of the symptoms of PCOS.

PCOS is far too common, and women’s health is far too important, for us to tolerate ambiguity on this scale. The online PCOS meet-up that we are hosting on September 17th is designed to get you all the info you need if you have PCOS, think you might have a hormonal imbalance, or just want to learn more. Dr. Sharon Briggs from Modern Fertility will be walk us through what we need to know about PCOS, how we can talk to our doctors about it, and answer questions big and small (nothing is TMI). Join us. We’d love to make this biggest online meet-up about hormones to date.

1 in 10 women. Let’s give PCOS the spotlight it deserves.

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