The Story of My Diagnosis and How PCOS Project Came To Be

My Story – Part I

Hi there! For those that don’t already know me, my name is Morgan and I am the creator and author of the blog PCOS Project. I wanted to share a little of my story with you so that you could get to know me a bit better and why I decided to start PCOS Project!

It has taken me a while to write this post and share my entire story with you. In part, this is because my story is very long and emotional one, similar to many of your stories. But mostly, it’s because it brings back memories and emotions that are hard to deal with and it’s not always comfortable to think about. One thing I’ve realized is that to be someone that leads by example, you must get out of your comfort zone and get uncomfortable.

So what if it’s a little emotional to write out and share my story?! If it helps even a single person out there, or inspires someone to keep on going, then it was 100% worth it.

You may have seen part of this story on my collab post with Post IVF World on her blog. If not, feel free to check it out or read the rest of the story here.

So without further to do, I’d like to share my story about my journey with PCOS with you. Feel free to comment back with your story – I’d love to hear your story as well!

My journey has been a long one. When I was 15 years old, I was diagnosed with polycystic ovarian syndrome (PCOS). I had always been an active teenager and even played soccer for my high school team. In the course of three short months, I gained 30 lbs. I’d always eaten healthy and didn’t change any aspect of my diet, so I didn’t understand why I’d suddenly gained this weight. In addition to the weight gain, I completely lost my monthly cycle. I’d also experienced hair growth on my arms and stomach. As a girl in high school, still trying to figure out who she was, experiencing these symptoms was a lonely and difficult time. As if High School wasn’t already hard enough!

I’m the oldest child in my family and my mother has had normal Cycles her entire life. We could not figure out how it was possible to simply lose your period! With the support of my mother (I honestly don’t know if I could have done it without her), I visited several doctors who each told me to eat less and exercise more. Um, rude. Both my mom and I tried to tell the doctors about my healthy lifestyle – the weight gain and other symptoms did not make sense with how I was currently living. None of the doctors listened. This was an extremely frustrating time for me. I think about how little the doctors knew about PCOS 10 years ago, and my heart goes out to all the women who have lived through this condition for years before me. For years before I was diagnosed, when doctors were completely unaware of the condition and could provide no support- medically or emotionally. As much as I struggled, I can’t imagine what it would feel like to go undiagnosed with the condition like PCOS for an entire lifetime.

If I’ve learned anything in my own health journey, it’s that you must be the advocate for your own health and your own body. Only you know how you truly feel and what symptoms you are experiencing, regardless of what any medical professional tells you. As someone who has always been interested in research, I decided to start looking into my own symptoms. I scoured the internet, looking into the symptoms I was experiencing. At the time, I did not know that the weight gain, loss of my cycle, and hair growth were all related. I was mainly concerned with the fact that I could not seem to lose the weight that I had so quickly put on. I was still playing soccer for 2 hours every day and I seemed to be maintaining or even gaining weight. How could this be?  I was frustrated, depressed, and exhausted. I would come home from soccer practice and fall asleep immediately, sleeping through the night until the next school day. Okay, maybe I’d shower first. That would be kind of gross if I didn’t. I promise I shower guys!

I wish I remembered the exact moment that I discovered PCOS. In some ways, maybe it’s a good thing that I don’t…it makes my journey more of a journey and less of a moment. One moment that could define me in such a heavy way. But, at some point in my research I remember looking into my difficulty losing weight and the correlation with insulin resistance. At this time, medicine knew very little about polycystic ovarian syndrome. Doctors did know, however, that PCOS and insulin resistance were linked. Mild weight gain and hormonal imbalances led to insulin resistance, which led to more weight gain. What a crap condition! As I read over the symptoms I started to see similarities in my own health. I had lost my period suddenly after a long while of having completely normal cycles. I was growing long black hairs on my arms and stomach. I’d even seen a few hairs on my chin (to my horror and dismay). You can’t show up to high school with hair on your chin, you just can’t. Before losing my cycle, my cramps were so painful that I had fainted several times. I often had to stay in bed because of how much pain I was in during my cycle. My skin had always been fair and because my complexion, I’d often been compared to a porcelain doll. Now my porcelain skin was covered in acne. While I thought that the acne was from a delayed wave of puberty, it seems that it could have a more Sinister cause. To be perfectly honest, I felt hairy, fat, and ugly, and I didn’t think it could get much worse. Let me tell you something ladies. NEVER Tell the universe that it can’t get worse. While dealing with my PCOS symptoms, I was also struggling with IBS. I would go two weeks without having a bowel movement. Yes, I’m going to talk about pooping. Sorry not sorry. I could hardly eat because there is no room for the food to go. I was miserable. I had no energy. I was bloated. So yea, it got worse!

All this misery gave me the motivation to attempt to get a PCOS diagnosis. I did some research and found an OBGYN that seemed to know her stuff. Looking back, the process of getting a diagnosis was actually fairly simple for me. I’ve heard so many stories of women who have struggled for years to get a diagnosis when they already knew that they had the condition. For me, learning about the condition and struggling to overcome it was the most difficult part of my journey. In my first appointment at the OBGYN, we simply talked about my condition and she put me on birth control. I was not happy with this course of treatment because I did not feel that it encompassed most of my symptoms, but I agree to try it. After a month or two, my cycle did come back. My cramps continued to be extremely painful and my weight did not change. Additionally, the hair growth did not seem to improve. I went back to the OBGYN a few months later to assess my progress. I had done some research on Metformin and its success in treating the symptoms of PCOS. At this time, very few doctors were using Metformin to treat PCOS though it was not unheard of and the doctors that were using it for having great results. I asked my OBGYN to try it and she agreed to write the script if I continue to stay on the birth control.

My journey with Metformin was a long and frustrating one. I had so much hope that Metformin would be the thing that helped me lose weight and reverse my insulin resistance (which I had been diagnosed with). Unfortunately, Metformin only caused me severe nausea, GI upset, vomiting, and some other unfriendly side effects.

Basically you guys, I couldn’t eat a thing and I puked and pooped my guts out. Ironically (although I’m sure none of you will be surprised by this), I DID NOT LOSE ANY WEIGHT DURING THIS TIME!!!!!!! WHY?!!!!!!! HOWWWWWWW?!!! Freaking body has betrayed me and now I’m puking and pooping all over the place and I can’t even eat and everything just sucks. That’s how I felt at the time at least! Even more ironically, after all that time of being so constipated and dealing with IBS, I thought that my body would react to “being cleansed”, but alas, no. Apparently I have no normal setting here, it’s one extreme or the other. <insert sigh here>

I was on the Metformin/BC combo for a few months before finding Glumetza, a different brand/formulation of Metformin that cost a buttload of money but didn’t give me any of the side effects that Metformin did. Overall, I believe I was on the Glumetza/BC combo for around 2 or 3 years with no outwards changes to my body (maybe it kept my insulin resistance from continuing to worsen, maybe not…we will never know for sure). I decided to go off the Glumetza at that time because I was entering college and could not afford any extra expenses.

Before I forget to mention it, throughout this time I was still continuing to exercise and eat well on a consistent basis. I was logging my exercise, nutrition, and bowel movements because all of my doctors would literally refuse to believe that I was exercising and eating well. I told them, my mom told them, but they refused to listen. So, I decided to start logging all of these things to PROVE once and for all that I was doing these things and the times. I even went to a new doctor to get a fresh opinion. The new doctor barely takes one look at me, only briefly looks at my notes and logs, and then turns to my mom and tells her, “Ma’am, I’m sorry to tell you this, but I believe your daughter has OCD and is fixated on her health. She is causing herself her own health issues by all of this fixation. I think we should put her on medication for her OCD immediately.” ….Wow. Just wow. But the scariest part of all of it? Not the doctor’s ignorance, not the fact that he didn’t even look at ANY of the information I brought to him. The scariest part of that visit was MY MOM. I’ve never seen her so angry in my entire life. She gave that doctor a TALKING TO….and that’s the understatement of the year. LOL! Go mom! Seriously don’t know what I would have done without that woman in my life! Lets all be clear here that while I may be slightly type A – I have no problem admitting that – I am nowhere NEAR being OCD. To have a doctor completely ignore all the medical data and symptoms, let alone the patient sitting in front of you that could have been examined (and no, he was NOT a psychiatrist if some of you were wondering, he was GP), just absolutely ridiculous. I’m getting heated just typing this!

As my journey continued, I started to see hope as the enemy. It was painful to hope because every time I hoped something would work, and it failed, it felt like another piece of me had shattered and fallen to the floor. How many pieces were left after all this brokenness that I had experienced?! In some ways, I felt like seeing that new doctor was the last of the hope that I had. I’m skipping a lot of other small parts to the story (otherwise you’d be sitting here reading for years), but just know that years and years of meds, doctors, and treatments taken a toll on the hope that I’d held onto. The hope that one day I’d be ‘normal’ and could actually just live a healthy lifestyle and have my body reflect that.

It really wasn’t until my senior year of college, after a lot more heartbreak and broken pieces, that I finally found an answer that allowed me to start seeing the results in my health that I’d waited so long to see. I wish I could tell you that it was a magic pill that I discovered which allowed me to lose the weight and finally feel healthy and confident in my skin. Unfortunately, we all know that life isn’t this easy. What is amazing, however, is that I found something to free me from my downward cycle of hopelessness and to shed my skin and become a new and improved version of myself. I’m not talking about my weight here, though that was a factor in my journey into self-love and healing. I’m talking about shedding my negativity, my inner ‘mean girl’, and my obsession with my outward appearance. I’m talking about loving myself and my body for the way that I am, despite my PCOS, despite the way that my body looks, and despite the fact that I may never be the definition of ‘beautiful’ to the media. None of that matters because I am beautiful to me, and that’s the most important thing that I’ve discovered so far.

More to come on my story in Part II!!

 

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