My PCOS Diagnosis.

I hate to use the word “journey" to describe anything that I go through because it feels so cliche, so rehearsed. I don’t see what I’ve been through as a journey because at the end of the day it’s just a chapter of my life; it’s a chapter I am closing out, after years of struggle and sacrifice, but a chapter I am learning to be grateful for.

I’ve struggled with my weight since I was in middle school. It became noticeable a couple of years before I started puberty and only progressed from there. I peaked at my highest weight at 202 pounds when I was in my sophomore year of high school, which is when I stopped crash dieting and actually worked more diligently at improving my health. I began going to a gym near my house, working with a nutritionist, and focusing on how I felt over how I looked. I lost some weight, but not enough to satisfy the 2010 body expectations. I found out years later that this yo-yo dieting and other mental health issues contributed to the development of binge eating disorder, which explained a lot for me. I struggled with sticking to “diets",” often swung like a pendulum from one extreme to another in eating far too little or far too much. By the time I graduated high school, I had peaked back over 200 pounds.

The real difficulties came when I visited my primary care physician through my parent’s insurance. He was older, old-fashioned, and quick to blame any and all of my health issues on my weight—even those that had nothing to do with my weight. Migraines, menstrual cramps, digestive issues—all went ignored for years because they were simply related to my being overweight: “If you lose a few pounds, most of these issues would resolve themselves.” He’d tell me this with every visit, and with every visit I was less inclined to even want to go into the office. My senior year of high school I injured my knee playing football on my school’s Swiss cheese football field. My mother took me into the office to see what injuries I’d sustained, and his answer was a list that ranged from a torn ACL to dislocation, but he found a way to turn it around to say that my weight was to blame for the injury.

The older I got, the more frustrating this narrative became. When I began working and had my own insurance, I switched to a new primary physician hoping that the narrative would change—it didn’t.

My new doctor was just as negligent as the first in terms of ignoring my symptoms in lieu of my weight, finding ways to turn every ailment into something easily cured if I just “lost a few pounds.” I was so tired of the same conversations that I eventually just stopped going to the doctor altogether. It wasn’t until my symptoms became unmanageable that I returned to a new physician under new insurance years later that things would change—we’ll touch back on that.

Perhaps the most frustrating and damaging part of this situation to me was the lack of consideration for my immediate family history. My mother was diagnosed with stage 3C ovarian cancer in her 40’s, an aggressive cancer that gave her less than a 15% survival rate when she was originally diagnosed. She also dealt with heavy and painful menstrual cycles throughout her teens and twenties that only worsened as she got older. She thought it was normal, too. Unfortunately for her, the warning signs of her cancer were symptoms that she was used to experiencing every month with her cycle, so she ignored them until she couldn’t ignore them anymore. What’s worse is that my mom’s father also had cancer—twice. He was diagnosed with advanced stage colorectal cancer in his 40’s and later bladder cancer in his 80’s. All three of these cancers share genetic markers, which is concerning. Did any of my physicians have concerns about this? No. Did any of them recommend that I get any genetic testing done to look for any of the known genetic markers for ovarian cancer or breast cancer, or even other reproductive cancers? No.

Fastforward to 2022, when I finally met the doctor who changed the narrative for me. He was around the same age as me, which was the first relief. He spoke to me like a human being. He didn’t mention my weight at all during our first meeting, and when he brought it up during our second appointment, I mentioned some weight loss that I had managed, and he was actually congratulative rather than passive or even dismissive. We spoke about ways of managing my mental health, which was a huge roadblock for me in managing my weight. We discussed my menstrual issues, and he made the same suggestions that all of my physicians have—you can always go on birth control! I told him that I’d tried hormonal birth control and did not do well on it. We nixed the idea and moved on, which was a relief. He was the first to mention the possibility of polycystic ovarian syndrome (PCOS) or endometriosis to me. My insurance changed and I was onto a new physician before we could dig into it any further, but I was relieved to know that the possibility of finding a doctor who cared about my symptoms was a reality.

My next physician was just as surprising—and in a good way. She was attentive, supportive, and ordered a ton of tests to check out the likelihood of anything relating to my mom’s history. My genetic testing had come back clean years prior, but we still wanted to rule out any abnormalities. I had done a uterine biopsy with my previous physician’s referral, which was clean. This new physician ordered a pelvic and vaginal ultrasound after I’d been complaining of terrible lower back and pelvic pains on my left side. Alas, the cysts. The scans revealed dozens of cysts on both ovaries, which explained the pain I was experiencing. The sharp pains I’d experienced the week prior were caused by the rupturing of one of the cysts. We discussed what that meant for me and treatment options moving forward. I knew there weren’t many options.

I researched dietary changes and tried to establish as many of the “recommended” changes I could, but I found that so many of them were confusing or contradictory. Eat this, don’t eat this; avoid this but don’t avoid it at the same time. I decided that I wanted to return to a plant-based diet because I knew that it worked for my body and it made me feel whole and well, something I desperately needed to feel. But at this same time I was eager to get started with healing my body, I was also grieving the time I’d spent hating it, depriving it of life and love, and wishing that I could be so many other things without knowing that there were things beyond my control at play. I spent half my life trying to achieve something that wouldn’t have likely been achievable for me without putting myself in grave danger, and I spent years of my life hating myself because I wasn’t who I thought I needed to be. I grieved the girl who was rejected, the girl who was ignored and pushed aside, the girl who was gaslit and told she was being dramatic or looking for attention. I grieved the young woman who choked down her discomfort and her pain for the fear of coming off as “too much” for others, for the fear that they’d feel she was annoying or that she was making things up. I grieve for the version of me who never felt good enough in her own skin. I spent over a decade of my life trying to mold myself into something that might fit within society’s expectations of what a woman my age should look like, and as a result I lost years to an illness I didn’t even know I had. I’ve begun to move through the other side of this grief, though I still have days where I sit with it. I am working towards accepting things as they are and improving them every day.

Some days are harder than others. Often, I still feel trapped within this box, asking myself if I will ever be capable of being something more than I am, because I don’t know that my body will let me. It’s crippling, feeling trapped like this. But I also feel as though I have made progress, too. I know that I am not defined by my weight, but years of eating disorders will do their damage. Now, I just continue to work on pursuing my plant-based diet, utilize my coaching knowledge to help myself develop healthy skills and mechanisms for moving forward, and push to improve every single day. I am doing the best that I can do, and that is what matters the most.