I Was Told I Had PCOS — It Took Me Five Years To Prove I Didn’t

Sometimes you have to trust your instincts and take your health into your own hands.

Stocksy

In the summer of 2012, I stopped getting my period. As a 21-year-old who'd been on birth control for five years, this was unsettling. Many missed periods and multiple negative pregnancy tests later, it was safe to assume that this was just something my body was going through. I had always struggled with irregular periods, even on the pill, so while it was not the most comforting of situations, it wasn't entirely out of the ordinary. I finally made it to the OBGYN, who without doing blood work, assured me everything was fine and that this was "normal" — oh, and that I might have something called polycystic ovary syndrome (PCOS). I really had no idea what PCOS was, but she said it wasn't anything to worry about at the moment. I mean, as long as I wasn't pregnant, I was content. Little did I know the feeling of contentment wouldn't last, and that it would signify the need to trust my instincts and take my health into my own hands.

The lack of periods continued, and once again I started to feel unsettled. I went back to the gyno to request blood tests, and anxiously waited my results. I was in Montreal with my now-husband when I got a call, and after having a minor panic attack as I reached to answer the phone, I was told I had higher than normal testosterone levels. I wondered what that meant — was I turning into a man? No, the doctor told me, I probably just had PCOS. She said I should eventually get an ultrasound to check my ovaries for cysts, but once again it was nothing to worry about. In fact, the prescribed treatment was birth control — how convenient! And life went on.

The thing was, even though I was happy to hear I was "okay," it still never felt right. Sure, having your period can be major pain in the butt, but it's a natural part of being a woman. I didn't feel natural, and even worse, I felt very disconnected from my body.

2017 was when things began to change. That nagging, unsettled feeling inside of me began grow, and I couldn't ignore it anymore. Coincidentally (or not) around the same time I noticed some posts from Lee Tilghman, an influencer I follow on Instagram, talking about her experience with PCOS. Lee shared everything from her panic at the diagnosis (she was diagnosed by an actual endocrinologist) to how she essentially rebelled against the traditional Western medical approach and made moves to heal herself naturally through diet and lifestyle changes. Inspired by Lee's story, I began to do my own research. I learned that PCOS was not life threatening, but it did carry some health risks, and could also affect your ability to get pregnant. While at one point pregnancy was the last thing on my mind, now that I was older, I knew children were something I wanted in my future. I also started to question what I was putting in my body and why. This sounds silly, but until then I never really understood how birth control worked, and that it was a synthetic hormone. I wondered, how can they do an accurate test of my hormone levels when they aren't even my natural hormones? I was confused and overwhelmed. 

Nonetheless, I went back for another round of blood tests (while on birth control) and an ultrasound, which came back completely cyst-free. My doctor told me my hormones were "varied" and that I probably have a minor case of PCOS, and that when the time came for me to want to get pregnant, they would most likely up my birth control dosage and then have me abruptly stop taking it, in the hopes that it would allow me to get pregnant. None of this felt right to me, and I knew I had to take matters into my own hands. 

It suddenly became very clear to me that I needed to go off birth control. While my doctors didn't necessarily tell me not to, it definitely wasn't encouraged. Even my mom was weary, warning me it would really suck if I were to get pregnant before my wedding (I was engaged at the time). It felt like everyone was putting not getting pregnant as a priority over my actual concerns, and to be honest, I felt pretty alone. Luckily though, my then-fiancé was extremely supportive, so I took the plunge and stopped taking the pill for the first time in almost 10 years. And guess what? I got my period right away. 

Coming off the pill didn't come without its complications. My body had to learn to function on its own again, and let me tell you, these sensitive bodies of ours can take a while to regulate. One huge thing for me happened about six months post-pill: my skin started to break out like crazy. Like, worse than it ever had before. When talking to my doctor about it, they once again brought up birth control, and how going back on it could help, but I knew that wasn't the right approach for me. That's what lead me to find a doctor in functional medicine, a practice of medicine that looks at a person's health from an all-encompassing angle, considering everything from stress and lifestyle, to nutrient deficiencies. After having blood and urine labs done with my new doctor (sans birth control), so much light was shed on my conditions. For example, my reported high testosterone levels weren't even necessarily that high, but it was more that my estrogen was low, and therefore the testosterone was overpowering it. I also learned that my cortisol levels were so shot that my body was struggling to produce the hormones it needed. She suggested supplements, identified food stressors, and sure enough, my skin got better — without the use of any hormones. I finally felt heard, and more importantly, I felt supported too. Oh, and as it turned out, I never had PCOS.

I Was Told I Had PCOS, And It Took Me Five Years To Prove I Didn’t
Stocksy

PCOS is defined as a condition caused by an imbalance of the reproductive hormones, with symptoms ranging from irregular periods to hair growth on the face and chin. 10% of women are diagnosed with PCOS, yet despite the name, not all women actually have ovarian cysts. Conversely, a study found that 25% of "normal" women have ovarian cysts, despite them not having PCOS. It's a condition that doctors admittedly know little about, with many "gray area" symptoms that are difficult to diagnose. In fact, there have been initiatives to rename the condition to "metabolic reproductive syndrome." In the same article by Healio, a NIH panel reported, "[The name PCOS] is a distraction, an impediment to progress. It causes confusion and is a barrier to effective education and communication. It focuses on ... polycystic ovarian morphology, which is neither necessary nor sufficient to diagnose the condition." In Western medicine PCOS is considered incurable — clearly, it's pretty complicated. 

Those diagnosed with PCOS are told to take birth control to keep symptoms at bay, which brings up the fact that birth control is very often prescribed for reasons other than preventing pregnancy. The pill is treated as somewhat of a "cure all" for everything from acne and cramps, to endometriosis, but in reality, it's not really a cure at all. Rather it's more of a bandaid, masking symptoms rather than healing them. I may sound like I am anti-birth control but I promise I'm not. I think birth control is amazing for what it's designed to do — prevent pregnancy — but that it's a little tricky when it comes to everything else. 

Traditional Western medicine is focused on immediate cures and results, as well as on clear-cut diagnoses. This is amazing for so many ailments and diseases, but I don't believe it is a method that can be applied to everything. There are a lack of resources and education on preventative and functional medicine, and it's really something you have to pursue on your own if it's of interest to you. There was so much I didn't understand about my body, like how the endocrine system works and that the word "hormone" isn't just related to your menstrual cycle. We have many, many hormones, ranging from those released from your hypothalamus to your thyroid. Everything in our body is connected, and when one thing is off, it will inevitably affect everything else. When you apply a bandaid approach to one singular hormone-related symptom, you are not supporting your body, but working against it. In a sense we've been taught to mute what our body is trying to tell us, rather than understand, support, and heal it. When the times comes to take the bandaid off, whatever issue you had will still be there. And even worse, the longer the issue persists, the more complicated it is to treat. 

No woman is exactly the same. We all have different genetic reactions, different lifestyles and situations, but at the end of the day we all have bodies that need to be supported, and I wish there was a better understanding of that.

Realizing I didn't have PCOS was relieving to a certain degree, but at that point my focus had already shifted to my general hormonal health rather than the confines of one specific condition. Because of this, I didn't find out I didn't have PCOS in some grand reveal, rather it was just that as we dove deeper into my health we attended to the things we noticed — supporting my body in its production of estrogen, tackling nutritional deficiencies, etc. — as opposed to searching for a diagnosis and sending me on my way. Adding to this sense of detachment from the PCOS diagnosis was the fact that I got my period immediately after going off birth control, and every month since. I had been told, and read, that birth control would help women with PCOS (who did not menstruate) get their periods, while for me, it did the exact opposite. That, in combination with the other factors, showed the diagnosis of PCOS, which didn't sit right with me from the start, was clearly not applicable to me. 

I can't lie and say that taking my health into my own hands wasn't scary and overwhelming — because it was. At times I felt unsupported, like I had to defend my choice, and like my voice was not being heard. Yet, despite the fear, I tapped into the strength I had to listen to the voice inside telling me to branch out, to learn more, and stand up for myself. It required a lot of patience, because let me tell you, the results were not immediate, but it was the best decision I could have made. And you know what? I think it'll make my future decisions a little less scary, too. 

No woman is exactly the same. We all have different genetic reactions, different lifestyles and situations, but at the end of the day we all have bodies that need to be supported, and I wish there was a better understanding of that. Because of this process, I feel connected to my body for the first time in my life. It sounds cheesy, but I've truly gained an appreciation for the complexity of the female body and therefore have achieved a higher level of self-love and respect. And we all know functioning from a place of love is always better than acting in fear.

If you're suffering from a nagging symptom, are given a vague diagnosis that doesn't feel right, or simply do not feel heard or supported, I encourage you to explore your options. Functional medicine has been life-changing for me, and has brought a lot of clarity to my health. Unfortunately, it's typically not covered by insurance and can get pretty expensive, therefore I understand it may not be an option for everyone. I hope that's something that changes soon, but in the meantime there are resources out there, sometimes you just need to be your own advocate to find to them.

I still have frustrations with my body and health. I still have prescription medicine I take. I am not anti-Western medicine and I still trust my doctors, but now I also know when I need to trust myself.

Associate Editor at Livingly. You can reach me by email at sydney.fogel@livingly.com and on Instagram @sydneyfvz
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