September is PCOS (Polycystic Ovarian Syndrome) Awareness Month.
I heard someone say recently that they feel like there is an “awareness” day, week, or month for everything these days, and it feels like we’re in this vortex of over-saturation of “awareness.”
This made me cringe.
I mean, I get it. But here’s the thing: There is still a significant awareness deficit of many things. We can’t expect people to understand what we’re going through if we keep quiet and don’t speak up. It leaves us feeling isolated, alone, and left behind while other ailments receive attention from the medical community.
PCOS is highly misunderstood, even by doctors, and that’s an understatement. Prime example: When I first began developing symptoms of PCOS 10 years ago, the first doctor I saw told me that I couldn’t possibly have it because I wasn’t overweight enough and dismissed my request for further testing.
Guess what? I did have it. The weight gain just came later. And finding a new doctor (the same one I see today) was the best decision I’ve ever made. PCOS is often one of the most commonly misdiagnosed endocrine disorders that impact women, and it goes beyond infertility.
Related: Infertility: A Decade of Waiting, Miracles, Loss, And Hope
Beyond the blatant misunderstanding of what PCOS is and who it impacts, this is why PCOS awareness is so important:
1 in 10 women struggles with PCOS. This number fluctuates between 1-8 and 1-10, but neither is favorable.
PCOS comes with at least 32 possible symptoms that vary in intensity.
Fill a room with women who have PCOS, and you’ll find different combinations of symptoms – no two are the same.
There is no cure for PCOS – there are only options for managing symptoms, and what works for one woman may not for the next.
As soon as a woman with PCOS finds a way to manage existing symptoms, new symptoms flare up, forcing us to shift everything about our treatments, diets, supplements, vitamins, etc.
Women with PCOS have a higher risk of developing heart disease, diabetes, and certain types of cancer.
There is research suggesting that PCOS should be classified as an autoimmune disease. Furthermore, there is medical proof that certain autoimmune diseases are often linked to PCOS.
PCOS has hurt me in a lot of ways. It has robbed me of my ability to conceive, given me 18 of the 32 possible symptoms, caused immense abdominal pain when I least expected it, impacted my weight management and overall health, caused a massive rift in how I see myself as a woman and has left a permanent scar on my heart and soul.
PCOS awareness is critical because many women battle daily in varying ways. We have no cure. Statistics are not in our favor. We have tried everything suggested to manage our symptoms.
We’ve been preyed upon by countless companies who claim they can help us get pregnant. We’ve been through the wringer. We’re misunderstood. We often feel isolated and alone.
Related: When your heart says yes, but your body says no.
And yet, we have the best community of supporters. Meet any woman with PCOS who will hug you while she says “me, too” through her tears. Post it on Instagram, and they will flock to you so you know you’re not alone.
PCOS has taken so much from me but has given me the most incredible friends and community a girl could ask for. PCOS awareness has connected me to many women I wouldn’t know otherwise.
As tricky as this syndrome is, it does not define who I am. I’m sometimes broken and grieve my infertility and miscarriage, but I’m more than that.
I have PCOS, but PCOS does not have me.
I am still standing.
Jessi and her husband Glenn have spent their 11-year marriage navigating infertility. Between her PCOS and his male-factor infertility, they have struggled immensely to grow their family since the beginning. They share one daughter conceived from fertility treatment (born 2010) and had one surprise miracle pregnancy after five+ years of TTC that ended in a devastating miscarriage (2017). Jessi writes about conquering infertility, embracing motherhood, recovering from a miscarriage, and her faith on her blog Life Abundant, on Facebook, and on Instagram.
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