10 Things I Wish I Knew When I Was Diagnosed with PCOS

It’s no secret that PCOS is a mystery to many of us when we are diagnosed. We receive little education and information on what it entails for our bodies, and are often left feeling in the dark. Here’s a list of ten things I wish my doctor shared with me when I was diagnosed.

1. PCOS is a complex endocrine disorder. The endocrine system calls the shots in basically our entire body, so PCOS impacts the entire body and is not just a reproductive condition.

According to the NIH, “PCOS is a multiorgan disease affecting most endocrine organs”. And since the endocrine system regulates all biological processes in the body, down to the brain and nervous system and metabolic function, PCOS symptoms can be experienced in just about any part of the body. So, if all you’ve heard about it is that it makes you hold onto weight and makes it difficult to get pregnant, take this as your notice to feel justified in symptoms you’re experiencing.

2. Having PCOS doesn’t meant you’re not going to be able to get pregnant

A little louder for the people in the back, no matter what your goals are! If your goals are to avoid getting pregnant, do NOT ditch the contraception (I mean, for a lot of reasons, but seriously, don’t take a PCOS diagnosis as your clearance for unprotected sex if you are trying to avoid pregnancy). And, if your goals are to get pregnant, do not feel hopeless. Even though PCOS is one of the most common causes of infertility it women, it is actually one of the most treatable. We’ve all been subject to the fear mongering and obsession that ‘people with PCOS can’t get pregnant’. It’s simply not true – so if that’s causing you stress, release it now.

3. Birth control pills and other common medications for PCOS are not going to fix everything

Arguably the most common treatment for PCOS is a combination hormonal birth control pill. This is because very often with PCOS, individuals experience unpredictable, irregular, prolonged, or absent menstruation. Additionally there is often an elevated presence of testosterone. Combination hormonal birth control pills can assist with decreasing the amount of testosterone circulating in the body, and help with reduction of symptoms like acne or hirsutism, and can help to regulate the cycle. And, it helps ensure we’re shedding endometrial lining on a regular basis, which is key to preventing endometrial cancer.

But what I wish I knew when I went on the pill at 18 was that the pill isn’t a cure for PCOS, and was never designed to be one. Everything else I experienced was still there. I still had underlying inflammation. I still had issues losing and maintaining weight. Anxiety: alive and roaring. Sleep disruption: Every. Single. Night. Gut issues: to the point where I was cancelling plans and damaging relationships. It’s not a cure-all, so once again, find validation in what you’re feeling even if you’re being told your PCOS is being “managed” by a certain medication.

4. Being on a hormonal birth control pill also makes it really tough to get diagnosed

While we’re talking about the pill, it’s injecting hormones into our bodies, right? In doing so, it’s limiting the amount of testosterone that’s circulating in our bodies, or impairing the effect of that elevated testosterone. Hmm. But here’s the tough part – elevated testosterone levels and the effect on our bodies is one of the key diagnostic criteria to learn whether we have PCOS, which ultimately puts us at risk for various long-term potential health risks. But, if we’re put on the pill at 16, 17, 18, before anyone checks us out for PCOS and stay on the pill for 10-15 years, how are we going to know if we have PCOS? And then we still experience symptoms the pill isn’t fixing, but we have no idea what’s driving it. So how do we care for it?

5. PCOS can lead to tons of different symptom manifestations

How much time do y’all have? PCOS is so personalized and unique to every individual. And like we talked about, it’s an endocrine disorder. So something is disrupting our endocrine system, which regulates every biological process in the body. So symptoms can manifest everywhere:

  • Skin: Eczema, skin tags, acne, oily skin
  • Hair: Head hair thinning, body hair growth, facial hair growth
  • Mental: Anxiety, depression, mood disorders, irritability, chronic stress, body image, self image, self worth, self confidence
  • Reproductive: Menstrual irregularities, absence, or unpredictability, difficulty getting pregnant
  • Body: Weight gain, difficulty losing weight or maintaining weight
  • Sleep: Insomnia, sleep apnea, daytime fatigue, varying energy levels throughout the day

This is not an exhaustive list, but I’m tired (my PCOS fatigue is not cute today). I’m also not trying to depress you, but I’m trying to tell you that what you are feeling is real, and no matter how many times someone in your life tells you, it is not in your head, and you are not making it up.

6. Everyone’s so obsessed with telling you to lose weight BUT what they don’t tell you is how that it’s not actually weight loss helping you, but HEALTHY measures you take to lose weight

This just makes me want to scream, I have to be honest. Doctors see PCOS and flip out that if you don’t lose weight, your insulin resistance will worsen and you’ll get diabetes. So they tell us weight loss is paramount to preventing diabetes, when it’s really healthy habits that often contribute to weight loss, not the weight loss itself. In fact, unhealthy weight loss can actually weaken our insulin sensitivity. But they don’t tell us that. So instead we thank them for the psychological damage and promotion of already disordered eating. I’ll take my pamphlet and be on my merry little way.

And how about my friends with ‘lean’ PCOS? I’m sorry but you all really get neglected here, too. Living in a fatphobic world makes your lives even harder because doctors figure, “eh, normal body weight, you are GRAND. See you in ten years when you want to get pregnant, bye!” But, the reality is, we should actually ALL be making lifestyle shifts to help increase our insulin sensitivity. According to a study from the NIH, “Lean women with PCOS had significantly greater insulin resistance compared with their BMI-matched non-PCOS counterparts”.

Ok. So it’s really not about weight loss then. It’s about when we take HEALTHY measures to lose weight (please hold for #7 where I will yell DO NOT UNDEREAT at the top of my asthmatic lungs), when we move our bodies, eat in a way to balance our hormones, practice mindfulness, oh, hey, insulin resistance becomes controlled. Sleep improves. Cortisol levels balance out. Peace ensues.

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10 Things I Wish I Knew When I Was Diagnosed with PCOS

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