Growing Up With A PCOS Diagnosis: My Story
I got my period for the first time in the seventh grade. I remember waking up one morning before school with a visit from “aunt flow” the night before FREAKING OUT. At that time, my mom was leaving for work before I even woke up for school and my dad was making sure all of us kids were up and prepared for the day. I told my dad what had happened and he rushed to the store to get me some pads and brought them back to me so I could finish getting ready for the day. I remember going through the school day feeling like everyone knew that I was currently bleeding to death through my vagina...at least that's what it felt like.
I grew up with three older sisters and my mom in the house so I thought I knew what to expect what once I finally got my period. I bleed for four to six days, I wear a pad or tampon, and I can now have a baby. That’s all there is to it..or so I thought at the time. There are so many aspects to starting your menses that no one tells you about and that surprise you as a young adult. One of those things is the possibility that you can develop hormone disorders that can have major impacts on your life; one of those diseases being PCOS.
Polycystic ovary syndrome is one of the most common hormonal disorders among women age 18-44 with nearly 5 million women in the United States suffering from this disease. Although there isn’t an exact cause of the disorder, issues are closely associated with higher levels of insulin and testosterone in women. For many women genetics are a major factor in whether or not they will develop the disease at some point in their lives. At 14 years old I became one of those women that would learn to live with this disorder.
There are many different signs and symptoms that come along with a PCOS diagnosis. For me, the first sign was my irregular (and if you ask me, irrational) periods. If started with my period being a couple days late or early. Then, I would randomly get my period in the middle of the day, something that was completely mortifying to a young girl in high school. And some months I wouldn’t have a period at all, which would have been a major cause for concern if I even knew what a penis looked like at this time in my life. However, I most certainly did not and pregnancy was out of the question. In addition to just having irregular periods I would have very long periods. I have had periods that have lasted 45 days ...STRAIGHT. A couple of those landed me in the hospital with
severe anemia. Unlike a lot of women with PCOS I didn’t develop severe acne. However, another early sign for me was developing Hidradenitis Suppurativa, which is another story for another day.
Some other symptoms I’ve suffered include issues surrounding my weight and weight gain, vitamin deficiencies, excess hair growth (it’s a bitch), and alopecia. My alopecia got so bad my freshman year in college that for the first time in my life I had to use buzz cutters on the back of my hair. My hair was falling about so bad that I had to cut it to the shortest length I had ever had in order for it to look nice again and not noticeably have bald spots. I remember the shame that I had at the time feeling like I didn’t have any control of my body and that it was attacking me in my most vulnerable way- my looks.
I have dealt with this disorder since I was a child, pretty much. And since there is no cure, no one knows what causes it, and I still have a period I’m probably going to be dealing with it for many years to come. The advice that I would give to others who were recently diagnosed is to listen to what their doctors and medical professionals tell them to do. They want to see you healthy so whatever plan you decide to implement needs to be per their recommendation.
One of the things that helps me stay ahead of the effects of this diseases is monitoring my weight and staying on top of any weight gain. Of course this isn’t easy and it is something I struggle with, but I know that maintaining a healthy weight and habits keeps me from having PCOS related flare ups such as acne and alopecia. Also, many women with PCOS are also at risk for type-2 diabetes. Since both my mother and sister have diabetes, I try to stay on top of my sugar intake and really monitor my eating habits.
I still very much struggle with this disease. Currently one of the things I am dealing with is the fact that PCOS can cause infertility. I’m not ready to have children right now, but I want to in the near future. The possibility that that may be a difficult process for me is very daunting, stressful, and emotional to me. I know this is something millions of women around the world think about, and I am not only with my concerns. I also know that even if one day getting pregnant becomes impossible for me, I have many other options to help me on my journey of becoming a mom.
It is important to note that this disease doesn’t look the same in every woman, and there is not a one size fits all solution to wellness while living with it. By sharing our own experiences with the next generation, and spreading awareness to the effects of this disease we can educate others and even increase the quality of life for some people. That is what PCOS Awareness Month is all about. Sometimes the worst part about dealing with certain diagnosis is the feeling the isolation. I encourage you to share this story, and maybe your own, with others.