September is PCOS Awareness Month, so I want to take the opportunity to do a little PCOS PSA.  (Although, I’ve never approached a post in this way before, so feel free to let me know if it’s useful.)

PCOS stands for “polycystic ovary syndrome” or “polycystic ovarian syndrome.”  It is: a common health problem caused by an imbalance of reproductive hormones. The hormonal imbalance creates problems in the ovaries. With PCOS, the egg may not develop as it should or it may not be released during ovulation as it should be.(www.womenshealth.gov)

PCOS impacts 1 in 10 women and is the leading cause of infertility.

Understanding and awareness of PCOS has increased dramatically in recent years, and the PCOS Challenge, an international nonprofit, has done a great job educating women about the disease and advocating for support and research.

This is important because I think historically doctors had a very specific idea of how a PCOS patient would present.  In fact, when I was first told I might have PCOS, I distinctly remember one doctor/friend (luckily a non-ob/gyn), telling me that I couldn’t have PCOS because I wasn’t overweight and didn’t have a beard.

There are several things upsetting about this comment, not the least of which is that I am actually incredibly sensitive about my level of facial hair!  More importantly, it paints a very narrow picture of PCOS, when in actuality the syndrome can manifest quite differently from woman to woman.  The name itself is even somewhat misleading because not every woman with PCOS will have polycystic ovaries.  Instead, there are a number of PCOS symptoms any one of which may or may not be expressed in a PCOS patient.  This is why many women with PCOS are improperly diagnosed or undiagnosed (according to PCOS Challenge).  

The first time a doctor suggested I might have PCOS was in 2012 when I didn’t get my period for 6 months after going off birth control.  I don’t even think she ran blood tests, she just said PCOS was something we “may want to investigate” if my cycle didn’t return.  Of course, this passing remark sent me down the internet rabbit hole.  Dr. Google convinced me I did indeed have PCOS, and a plethora of online gurus promised to cure me if I would only cut EVERYTHING out of my diet, exercise daily, and learn to be more mindful.  (Please note my heavy cynicism here…)

That said, paranoid about insulin resistance (commonly associated with PCOS) and the risk of diabetes, I did start jogging more often and became slightly more conscious about my diet.  Smart moves regardless of whether I had PCOS.  And related or not, my periods did return to a regular – if slightly extended – cycle.  I didn’t think any more about it until I went through my first infertility work up. 

During an ultrasound, my care team noted the characteristic “string of pearls” around my ovaries indicating that multiple follicles were developing at the same time (another common characteristic of PCOS).  But while I had polycystic appearing ovaries, my hormone levels were within range, so I did not meet the strict clinical criteria for a definitive diagnosis.  I was also not obviously insulin resistant.  My blood sugar was normal, albeit on the upper end of the normal range. 

Still I was given metformin (a drug that helps control blood sugar), told to limit my carbs, and try to lose 5% of my body weight.  It was one of many times when diagnostics revealed nothing conclusive, but I was treated anyway… just in case… just because we all wanted to feel like we were doing something. 

As it turned out, PCOS was not the villain in my fertility story. While PCOS is known to be related to infertility, its link to miscarriage is still medically debatable.  However, it may still have a role to play in my long-term health.  Here are some scary facts (source):

• Women with PCOS constitute the largest group of women at risk for developing cardiovascular disease and type 2 diabetes.
• Some studies have shown women with PCOS to be at three times higher risk for endometrial cancer and may also be at increased risk for ovarian and breast cancer.
• Some studies have shown due to symptoms of anxiety and depression, suicide attempts are up to seven times more common in women with PCOS than other women.

If you think you may have PCOS, please talk to your doctor.

If you are looking for supportive resources, here are a few I’ve found.  This is certainly not exhaustive.

• PCOS Challenge a non-profit advocacy and patient support organization
• “PCOS for Dummies” (link) good for the basics
• “PCOS Diet for the Newly Diagnosed” (link) I have enjoyed many of recipes in this book, so much so that it survived my “tidying up” purge
• “8 Steps to Reverse Your PCOS” (link) I liked how this book was structured, and the detail it went into around tests and results, but it definitely takes a naturopathic and integrated medicine approach which you should be aware of before reading

There is a booming online community of women with PCOS. If you have this diagnosis, please know that you are not alone. It can feel frightening and demoralizing to learn you have a chronic health condition that must be managed. But there are people and resources that can help, and we each have strength more than we know. And after all, RBG said, “So often in life, things that you regard as an impediment turn out to be great, good fortune.”