Living with Polycystic Ovary Syndrome

I was around 12 years old when I was diagnosed with Polycystic Ovary Syndrome, or as it is commonly known, PCOS. I remember my doctor sitting me and my mother down, scaring the shit out of us with her ominous facial expressions, and leading us to believe that I was about to be diagnosed with cancer or something worse. She explained that my blood tests came back indicating that I had PCOS. The first thing I asked was if I was dying and she reassured me that it was just a common hormonal disorder in folx of reproductive age—around the time of one’s first period. When we asked questions the only symptom the doctor emphasized was infertility. She suggested that I exercise and go on birth control (a.k.a. the pill) when I was a bit older to treat my hormone imbalance. Unfortunately sex and anything to do with reproduction was strictly Taboo in our household. “Never talk about sex,” was never outright said, but heavily implied in disgruntled glances and unwelcomed tones. My mother, being a Latinx womxn who had her first child at the age of 17, abhorred the idea of her teenage daughter on birth control. Her thought process possibly being: birth control would encourage a sex spree. We never talked about sex in my house. My mother had struggled to raise four children alone and listening to her talk about how different her life would have been if she had just had children later, put the fear of hell in all of us. My mom only asked two things of us as children: graduate high school and don’t get pregnant.

My mother made it clear: If you have sex, you’ll get pregnant, and your life will be over. We could not talk about sex and friendships with members of the opposite sex were heavily scrutinized. This is funny in retrospect as I am hella queer. Since I wasn’t dying and there was no cure for PCOS, we ended the appointment and went home. I remember being scared and a bit sad, as I was just told that my having a child in the future will be near impossible. That devastated me. Raising my concern to my mom on the drive home, I remember the conversation ending with her angrily asking: “Well you don’t plan on having kids anytime soon, do you?” I said no and that was that, I felt that if I continually asked about my PCOS, everyone would think I was just concerned about obtaining birth control and sex. That doctor’s appointment still haunts me. I wonder how differently my teenage years would have been if the doctor would have explained all the symptoms associated with PCOS. There are more symptoms involved than just infertility: there is insulin resistance, weight gain, difficulty with weight loss, acne, hair loss/male pattern balding, facial hair growth, body hair growth, irregular periods, and painful periods. Long term effects include: Uterine Cancer, Type 2 Diabetes, Hypertension, Sleep Apnea, Anxiety, and Depression. By starting off the conversation with infertility as a main PCOS symptom, the doctor had unknowingly shut down any lines of communication about PCOS in my house.

To be quite honest, I did not look into PCOS symptoms and treatments until recently.  Knowing there isn’t a cure has discouraged me from seeking proper treatment. Even if I were to seek proper treatment, most doctors only prescribe birth control and exercise. When I would ask doctors for advice on treating my symptoms I was just told the same thing: lose weight and go on the pill. No periods? “Lose weight and go on the pill.” Coarse chin hair and acne? “Lose weight and go on the pill.” Depressed? “Lose weight and go on the pill.” Difficulty losing weight? “Lose weight and go on the pill.” I felt brushed off everytime I asked questions. It made me feel as if my disorder was invalid; that I was being dramatic in even acknowledging it. I’ve been dieting since I was 10 years old. I have tried eating 500-1000 calories a day, liquid meal replacements, induced vomiting, excessive rigorous exercises, and simply not eating for as long as possible. After all this I would just lose 3 lbs max, it was exhausting and devastating. I really internalized my “failure” into hatred for myself. I saw myself as a failure. It wasn’t until I researched PCOS on my own time that I learned my insulin resistance makes weight loss very difficult and sets off varying symptoms.  

From my understanding of insulin resistance it is when insulin receptors in the cell wall distort, making it difficult for insulin molecules to bind and allow glucose to pass into the cell. This glucose builds up in the bloodstream and gets turned into fat. The extra insulin then triggers the release of androgens (a.k.a male sex hormones) which cause infertility, excess hair growth, male pattern baldness and much more. It is obviously more complex, but I would rather you consult sources with actual medical knowledge; I am not a doctor or registered anything. 

All this information hit me like a ton of bricks. It was not my fault. I was made fun of by peers and teased by family for my inability to lose weight. I had a medical reason for being overweight; I was not lazy or unmotivated. The coarse hair that runs across my face, arms, legs, and back had an explanation. For a lot of my childhood, I was teased for being hairy; I was always told I was not feminine enough. In my diagnosis I felt affirmed, yet cheated by my own genetics. Why am I affected? I already hated myself and my body, but finding out that all the symptoms I hate most can never be cured devastated me. In a society that relishes in being hairless and skinny, I was never gonna fit in.  

If I had more information about PCOS when I was diagnosed or when I spoke to doctors about symptoms, I would not have been so hard on myself. This is a very common hormonal disorder, why is it not talked about more? I spent years tormenting my body, trying to lose weight. It took many years before I finally stopped to listen to my body. It sounds odd in retrospect as you think you are always listening to your body, but think about it. You notice your body but are you listening and implementing actions to follow suit. I feel better in my body now that I am eating my full 2,000 calories and doing low-impact exercises. What I am slowly realizing is that I should focus on feeling good, rather than the number on the scale. Through light exercises and monitoring which foods cause bloating, I am finally caring for my body. I stopped counting calories and am intuitively eating. I am learning to not obsess over my scale every five minutes. It’s liberating. 

 We are only young once, I do not want to spend it hating myself. Weight is influenced by so many factors: environmental, genetic, medical, and much more. We can never know what is going on in someone else’s body and many of us do not even know what’s taking place in our own bodies. Your struggle with weight is valid. It should not diminish who you are as a person. So many things influencing weight lie outside of our control. There are so many effects of PCOS and weight barely scratches the surface. Polycystic Ovary Syndrome will always have an effect on my life. However, I am finally learning to manage it.

3 thoughts on “Living with Polycystic Ovary Syndrome

  1. Wow thank you for this. My 14 yo was just diagnosed and I feel like our experience at the doctor was similar. We were simply told its not life threatening but she’ll have a tough time with conceiving to limit carbs and get her on the pill. Man so much for medical improvements over the years. Is there anything you recommend to help educate a teen girl who’s a little overwhelmed and scared by this?

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    1. Hi Ashley! I’m so sorry you had a similar experience, it is so frustrating that not much has changed. For your daughter, I advise that she follow blogs that focus on PCOS run by licensed dietitians. Right now I am following @the.hormone.dietitian and @pcoschallenge on Instagram. I have been led to many helpful resources from there. Although there aren’t many medical studies, there are lots of people on the internet trying to connect and figure it out together. Also, looking into PCOS friendly foods really help. A lot of the time ,personally, I would feel bloated and lagged by certain foods, which was the result of my insulin resistance. Please feel free to reach out to me again! I really love that you are helping your daughter on her journey of managing PCOS.

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