10 Things to Know When 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.
7. Eating 1,000 calories a day will only make your PCOS symptoms worse
Let me clear my throat before this one: DO NOT UNDEREAT. Undereating is only going to make things worse, and I can promise you that. Believe me, I know how difficult it is when we are bombarded with images of the ideal, and sometimes that means we will take drastic measures to chase perfection. But, I'm saying this to you again out of love - PCOS is an endocrine disorder. Our hormones are out of balance, and if we are not fueling our bodies properly with the right nutrition, all we're going to do is send those hormones further out of balance. Nourishing your body properly is absolutely essential in getting your symptoms under control.
8. You can make lifestyle adjustments to balance your hormones naturally
or fill in where prescription medications may not be fitting the bill entirely
No, there is no magic pill for PCOS. Not at the time of this writing at least. No matter what Instagram ad you get targeted with for that new powder or elixir, there is no cure for PCOS at this time. If there was, I would be sitting at the PCOS elixir fountain taking selfies telling you all to get there as quickly as possible. We'd have a party. But the reality is that I have yet to find the fountain. What is most effective for PCOS is a multidisciplinary approach. We're not here to 'medication shame'. There's a reason why we have prescription medications. But it is our right to understand that prescriptions are not the only option we have, and if we want to use them, we still need to use our lifestyle choices to help fill in the gaps of these medications so we can truly feel our best.
9. Self medicating through trial and error diet fads, predatory supplements, or bandaging individual symptoms will make you waste thousands of dollars
According to the American College of Physicians, 84% of PCOS patients are unsatisfied with their care. So often this leads to us trying to solve things on our own, because where else are we supposed to go? Walk away from your laptop if you feel yourself succumbing to an influencer advertisement that’s trying to convince you they’ve discovered the magic potion. I promise you, if they did, they wouldn’t be sliding into your DMs, they’d be accepting their Nobel Prize.
Hair regrowth supplements: I have one word to describe how I feel about how much money I have spent on all the magical elixirs, tablets, serums, and ceremonial dances that claimed they'd bring back my thick and curly hair: EMBARRASSED. Stop wasting hundreds and thousands of dollars on these products!! You're only putting a bandage on the underlying issue. If the money tree in your backyard is flourishing, by all means, add these into your routine to SUPPLEMENT what you're doing lifestyle-wise to rebalance your hormones. Because the bottom line is, no amount of biotin is going to fix your head hair fall if that head hair fall is being caused by a hormonal imbalance.
Expensive skincare products: Stop with the trial and error of the expensive cleansers, creams, and magical serums that are costing you thousands of dollars. Yes, I know it's thousands. Because I was there. If you told me that eating gravel would get rid of my cystic acne, I'd pull up a chair on the side of the highway and use a shovel to get it into my mouth faster. But, once again, if your cystic acne is being driven by a hormonal imbalance INTERNALLY, then no mystical silver-infused pillowcase or sheet set will make your acne go away. And, no topical used in isolation will fix it either. We have to address the internal issue.
Elixirs and powders to get your period back: Are we seeing a pattern here yet? Stop self-medicating with individual symptom management. If you are not addressing ROOT CAUSE hormonal imbalance, you are wasting your money on all of it. The laser hair removal, the weight loss procedures, the supplements, the acids and serums, all of it is a waste because we're just bandaging individual symptoms. Stop wasting your money.
10. I wish I knew I wasn’t alone
This condition is severely underdiagnosed and likely affects up to 1 in 5 biological females. So stop feeling like you need to be silent about what you're feeling. Your voice lifts up the voice of someone else, until we start a chain reaction to demand what we deserve. We are in this together.