September is PCOS Awareness Month, and I am 1 in 10

September is PCOS awareness month! You all have seen me write about PCOS before: Long story short, a dear bloggy friend of mine told me I needed to be checked for it after she heard about some of my ailments, I finally got checked, and I was a classic case. PCOS stands for Polycystic Ovarian Syndrome, it affects 1 in 10 women worldwide, and is the most common endocrine disorder in women. Although PCOS has ovaries in its namesake, PCOS is largely a hormonal issue, and as all you all know, hormones are microscopic things that make a huge deal in how your body runs and functions.

I had heard about PCOS in passing, but never heard enough about it to consider it would be a large reason for the many health challenges I was encountering. Since high school, I’ve lost handfuls of hair every time I shower, and sure enough, visited a doctor about it twice. It was chalked up to stress and I was on my way. (I still lose a lot of hair, but have now just accepted it as I still have plenty, thankfully.) I also visited the doctor at least twice a year with complaints of impossible weight loss, and several times, I was told to just work harder, no doubt the doctor assuming that my tales of healthy eating and exercise were just lies (and twice, I was prescribed prescription weight loss pills, which I did not choose to take). I also had telltale signs of insulin resistance; feeling panicky and shaky if I didn’t regularly eat, having severe headaches when I didn’t eat enough carby stuff, and sometimes got panic attacks that felt like surges of electricity running through my body. The menstrual side effects were mostly masked for me as I had been on birth control for many years to control difficult cycles (also a large indicator of PCOS). What makes me angry about all of these signs is that they had all been presented to doctors over the years who never thought to piece them together, because as my endocrinologist finally pointed out, I’m a classic case and likely have been for years.  Click here to go read more of the symptoms. I’m lucky that I haven’t experienced all of these, but there are also some weird PCOS symptoms that are not included on this list that I’ve experienced like mental fogginess, “carb coma”, chin acne only (a hormonal spot), and super sensitive skin. (What makes this syndrome even trickier to diagnose? Many people have completely different symptoms — for example, while 50% of women with PCOS are obese, some are not overweight at all. Some women with PCOS also don’t even have cystic ovaries, yet their hormones match the profile of being PCOS-consistent. Confusing, right?!)

How did my PCOS get discovered, then? In 2012, I had had enough with the BS of trying to lose weight. I’d been blogging on the DCD for three years, and had started a 3x weekly morning boot camp. I was busting my ass in hopes of dropping some weight for one of my bucket list trips to Thailand. Instead, I gained weight. About six months prior, I had stopped taking my birth control and allergy medication in hopes that maybe some of my earlier weight gain was from medication. Without the assistance of hormones (birth control is a common treatment for PCOS), my symptoms intensified, and I demanded my general care doctor do an ultrasound of my ovaries. Sure enough, the scan and blood work revealed several small cysts, in addition to high androgen levels, both tell tale signs of PCOS. Since my diagnosis about a year and a half ago, I’ve lost 22 pounds, largely thanks to the great care I’m receiving from my endocrinologist, who placed me on 1,000 mg of Metformin, a Diabetes drug that can help control insulin and imbalanced hormones. He also does regular blood work, and we did some adjusting to my thyroid, which likes to go back and forth between normal and too low. In the past two months, all of my liver and thyroid levels have become balanced, which means my skin has cleared up, I have more energy, and I’m slowly but surely losing weight when I make very dedicated efforts. This was impossible before my diagnosis and treatment, and while I will have to have my blood work monitored every 3-5 months to adjust medications, for the first time in awhile, I have hope when it comes to losing weight. There is no cure for PCOS, but with weight loss and medication, many of the symptoms can be reduced.

So why am I writing about all of these very personal things on a very public blog? Because we all have a right to know what’s going on with our body. If this is the most common endocrine disorder in women, and I had all the symptoms for over TEN YEARS and was never told about it until a fellow ‘cyster’ suggested I get checked, I want more people to know about it. Sure, PCOS is a “tame” problem to have, in comparison to other medical concerns. But PCOS can be the launching pad for many other debilitating illnesses: ovarian cancer, uterine cancer, cervical cancer, diabetes, heart disease, and severe anxiety and depression. If just one woman goes to the doctor because she has any of the following symptoms, this blog has done its job. When you have an invisible illness, which means one that can’t usually be physically seen, like PCOS, Crohn’s disease (which my best friend suffers from, or Lupus (another dear friend of mine suffers from this), uneducated people sometimes minimize its effects. I’ve even had people remark that I should stop using PCOS as an excuse for not losing weight. This is not only inaccurate, it’s insensitive and hurtful when you’re experiencing the very real complications of said “fake illness”. I can lose weight with PCOS, just as I can live a healthy and happy life. However, the key to this is treatment, and that treatment couldn’t have been discovered had it not been for one friend courageously telling me to go get checked. Like any other medical symptom, if you genuinely feel that something isn’t right, you need to look into it, and if nobody listens, keep going until you find someone willing to fully investigate what’s going on. You are worth the hassle. You are worth the time. You are worth the knowledge — because you might be 1 in 10.

I wear teal for me.

I wear teal for me.