PCOS – Stephanie’s story

PCOS.  . . . a grouping of seemingly innocuous letters, downright innocent on their own and unimportant. Yet, the condition that they stand for and the impact it had on my self-esteem, happiness and health was anything but innocuous, anything but slight. It was only after years of misunderstandings, pain, the confidence of a sea sponge and a lot of hormonal induced cry fests that I truly understood what PCOS meant for me, for my future and my redefined idea of self.

Polycystic Ovarian Syndrome (PCOS), sometimes called Polycystic Ovarian Disease is an endocrine disorder that is estimated to affect 1.4 million women in Canada and 5 million women in the United States. Symptoms often start once the menstrual cycle begins but may not appear until well into a woman’s 20s or 30s. PCOS causes a hormonal imbalance which results in the ovaries producing a higher than normal amount of androgens (male hormones). This interferes with egg production, ovulation and menstrual cycles. The eggs that the ovaries normally produce develop into cysts, little sacs filled with liquid. Instead of being released during ovulation, as an egg would be released, the cysts build up in the ovaries and can become enlarged. This can lead to painful bursting cysts and cysts that grow so large they need to be removed surgically. PCOS is also linked to insulin resistance (like diabetes) and can affect many systems in the body and have long-term fertility and health consequences.

You’d think with the number of women affected, the potential development of long term health problems and the advanced nature of our health care system in Canada, treatment, diagnosis and awareness would be top notch. This is unfortunately not the case. Though I suffered with symptoms for years, including two incidents of hospitalization for an extremely painful burst cyst, it wasn’t until I finally saw a gynecologist who actually listened to my history, symptoms and experiences, who evaluated and did actual tests, that I finally had an answer after all those years of uncertainty: PCOS. When I did have an answer, there was next to no information on what PCOS actually was and what it meant for me in the long term. Though my Doctor tried to be as helpful as possible, there was little direction he could point me in, or it seemed pitifully inadequate to me in that moment, beyond the cursory talk of symptoms and fertility in his office. If PCOS was the reason I had hair where there shouldn’t be (looking at you chin hair) could I stop or reverse it? Was PCOS the reason that I had always struggled to lose weight no matter how active I was? That my hormones, sex drive, and menstrual cycle had never been ‘normal’? If so, then what could I do about all of this? I was already on the birth control pill (the typical prescribed treatment for PCOS) and I HATED it, in fact was planning on switching to an IUD. Was I alone with this struggle and if I wasn’t, why did I feel this way? If I had a Doctor that actually bothered to listen before now, would I be ‘better’ already, or is this my default state?

I had so very many questions and very little answers. My gynecologist recommended switching to a hormonal IUD if I didn’t want to remain on birth control to help with my hormonal imbalance (which I did) and left me with a small pamphlet on diet, PCOS symptoms and promised to have a ‘discussion’ about my options should I ever want to have children. I know he did this with the best of intentions, and I am still thankful that he brought me to an answer and actually listened to me in the first place, but when I left that appointment, I had never felt more broken in my life. I am a broken women. My literal biology is broken. The thing that makes me woman (in the truest biological sense of the word, there are many shades of womanhood beyond that of our sex organs) is wrong, flawed and will never be ‘normal’.  The worst part of all was how alone I felt facing this diagnosis. There was no one else I knew that had been diagnosed (though I had some friends who were experiencing the same symptoms) and no one was wearing ribbons or talking about a cure for PCOS. The only reason I knew what it was before the appointment was because my own research had brought me to it years ago as a possible explanation for the symptoms I was experiencing. It was a shameful, silent thing that I had to bear on my own. I was flawed, broken and I should sit down and be quiet about it. My unsightly hairs, my size, the acne on my face were all the fault of my broken body.

How could something broken ever be beautiful?

What followed were several years of frantic research, trying everything I possibly could to ‘fix myself’ and be as normal as possible. Cleanses, diet changes, physical activity and everything in-between. Medications, supplements, prescriptions and as much reading as I could get my hands on. I went from website to website, forum to forum in a search for the magical solution. I ate up stories of women who lived and thrived with PCOS and never let myself stop, never stopped and let myself think and absorb. I needed to find a solution to my problem, it was a separate thing that I could control, repress and conquer. This tail spin would have continued if it weren’t for two very important things: the unwavering love and support of my husband (then boyfriend) and a complete and utter life change.

Through my diagnosis and need to ‘fix’ myself, my supportive partner constantly reinforced that I was smart, capable and beautiful – there was nothing to fix and I could always talk to him about anything. He constantly reminded me to be kind to myself and that the only thing I had to worry about was treating my body right and feeling confident about who I was. It was this support that kept me going, kept me looking for a new job to escape the one that was causing me such misery and to keep soldiering on towards my career goals. On an off chance, I applied for a dream job on the other side of the country and something crazy happened – I got it. It meant a 5,000 km move away from friends and family, the doctor I had finally grown comfortable with and a complete re-organization of my life. There was no room for doubt, no room to question my confidence, it was just go, go, go until the move was complete and the next chapter of our lives together started. Just before my boyfriend and I moved, he also proposed to me (which, no surprise there, I accepted the crap out of). For the first time since my diagnosis, I didn’t have time to think about all of the things wrong with me and all of the things that I should be fixing. I was starting a brand new, high intensity job and planning a wedding. We were building a future in our remote corner of the northwest and there was no room for anything but love and happiness.

It was then, that something amazing happened. I stopped looking at PCOS as an affliction or something that I should be conquering. I wasn’t broken, I was just me and I was perfect. Of course, I still strove to improve my health and my husband and I have completely changed our diets (to the betterment of the both), I do yoga every day and I am still keeping up with research and different treatments. I also experienced a ton of hair issues around the time of the move (hormone and stress caused) and started to wrap my hair after years of curiosity about the practice (but that is a different story in and of itself). Within the wrapping community I have made some amazing friends and fellow PCOS warriors and found the togetherness, support and information that had eluded me for years. When I finally stopped to breathe and found a community, I finally started to change how I felt about PCOS and through that, how I felt about myself.

I am not PCOS. I am not broken, or faulty or lesser. I am Stephanie Halapija. I love wrapping my hair, makeup, gaming, reading and all things Museum. I am a complex and beautiful individual who has a lot to give to the world and I am not my condition. I am not a victim, I am a warrior and there is nothing stopping my success and happiness but my own self. I am confident and beautiful for exactly the way I am. I have a husband who loves me, family and friends that support and champion me and a job that is rewarding and challenging. PCOS is a part of who I am, it is a part of my future and I cannot change that but I can decide how I live with it and the mark it makes on my life. I have PCOS and I am complete, unbroken and whole.

So during this awesome September of POCS awareness, if you are me of three years ago just getting out of a doctor’s appointment or you’ve struggled with PCOS for years, remember this: you are beautiful. You are not broken, and there is hope for a future free of symptoms. You are the gatekeeper for your own happiness and there is a building global push for PCOS awareness, treatment and a better understanding of the condition that will only help all PCOS warriors in the future. Look into diet, exercise and all of the things that you can control and change that make it easier to live with PCOS but don’t let it become your life. Don’t try to fix yourself, because you are perfect the way you are and that includes all of those chin hairs and acne. PCOS is a part of who I am, but it does not define me and unless you let it, it will not define you either.

Fight on fellow PCOS warriors and know you are NEVER alone!

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