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Upon reflection, it seems almost unbelievable that I have been living with the symptoms of Polycystic Ovary Syndrome for almost twenty years now.
These are stories of PCOS written by women who have first-hand experience. We hope you find encouragement and support from reading them. If you would like to submit your own story please send it via email to PCOS My Story
Upon reflection, it seems almost unbelievable that I have been living with the symptoms of Polycystic Ovary Syndrome for almost twenty years now. But it is reality for me that PCOS has been my constant companion since the age of eleven when I began menstruating. I remember the anticipation of having my first period. My best friend had started a few months before me and I thought I couldn't wait to reach that magical milestone. Yes, I know, it just doesn't have the same appeal now, but the feelings were very real then. When it finally did start for me, I remember it was uneventful at first. My mother and I were prepared and there was no reason to think that I would be any different than any other adolescent female. I mean, its natural, once menstruation starts, it happens like clockwork each month, right? Funny, but I felt like my parents were almost proud of me---I was moving into womanhood and a very exciting part of my life.
Four weeks later my period didn't come again. I don't remember how long it took, possibly two or three months, but it did return. My body was adjusting to its new state of being and my hormones were just regulating; that is how my mother explained it to me. Nobody got worried when menstruation continued to be very irregular for me. To be honest, it wasn't a big issue because we just didn't discuss things like that openly in my home. Eventually, I noticed that I would go several months without bleeding then have an extremely heavy period. Sometimes the bleeding was so heavy that I would have much difficulty at school and would recruit my friends to help me watch for "accidents." It was very uncomfortable, but I had no reason to think it unusual --- I was still adjusting. During my middle school years I was very active in sports, playing basketball, volleyball, and softball and participating in track events. However, sometimes even these activities were affected by the irregular bleeding. But it had started that way and continued to be that way, so I just thought it was normal for me.
By the time I was a sophomore in high school, other symptoms of PCOS began to surface. I had never been what could be called a thin person, but at fourteen I was 5'3" and weighed around 130 lbs., which was not really considered to be overweight. Then, gradually I began to gain weight. Within two years, I put on 50 pounds. By the time I was seventeen, I topped the scales at around 180. In the span of those two years my life drastically changed. Anyone who meets me today quickly recognizes my outgoing personality and zest for living. This is not unlike how I entered my teenage years. I enjoyed a well-rounded social life, was a successful student, participated in extracurricular activities and had a healthy self-esteem. With the weight gain came many uncertainties about myself. I no longer felt good and I knew that my peers did not consider me attractive. My eating habits were very similar to those of other people my age, so I thought that I was just "doomed" to be fat and there was nothing I could do about it. My family did not understand the seemingly sudden change in me and some of them made very hurtful comments about my obvious lack of self-control and physical unattractiveness. For the first time in my life, I was "failing". Thus, I reacted by withdrawing into a shell that I considered safe. No longer comfortable in the spotlight, I stopped participating in school activities, ceased all participation in sports, and began to spend most of my time at home in my bedroom. My parents didn't know how to help and found themselves becoming more and more critical of the changes they saw happening to me. So, I withdrew even further.
As a senior in high school, I was no longer menstruating and had developed other physical manifestations that were very unsettling. Unsightly dark hair developed over my upper lip and began to sprout on my chin. While I was obviously not happy about this, I simply thought it was a matter of heredity and just one more reason not to make eye contact. Around this time, my mother would frequently fuss at me about having a dirty neck and elbows. I would scrub and scrub, but it just wouldn't go away. Years later, after being diagnosed with diabetes, I learned that this was actually an early sign of a metabolic disorder and is called acanthosis nigricans. So now I was not only physically a disaster, but I also felt "dirty." Something was very wrong, but no doctor had picked up on it during my yearly physicals. My mother and I were always told during medical visits that my hormones were still adjusting and I needed to lose weight. Neither of us ever thought to question the judgement of these medical professionals.
Finally, at the age of eighteen, after a year without having a period, I contacted my family doctor and told her that I thought something had to be wrong. She agreed that I was now an adult female and this problem really needed to be addressed. I received the standard treatment prescription for birth control pills but was given no warning of what to expect at my first period. Menstruation that month was no less than a nightmare. I bled so heavily that I could not attend school for an entire week. My doctor had me taking 4-5 birth control pills a day to try to get the bleeding to stop, but it continued for at least two weeks. I became extremely pale and family members worried that something was gravely wrong. Eventually, the bleeding ceased and life returned to "normal".
After a few months my periods became regulated and I thought at least the problems related to that part of my life were now solved. I really had no idea that the irregular bleeding, facial hair growth, thickened-dark skin and sudden weight gain were related or that I was suffering from the effects of Polycystic Ovary Syndrome. I wouldn't find that out for several more years, when infertility would force me to seek answers as to why my body continued to betray me.
When I look back on my teenage years, I do so with frustration and a sense of regret. PCOS robbed me of so much in those years and I didn't realize it until I came to a full understanding of what was actually happening to me at the time. And that understanding didn't come until I was near the end of my twenties. But with understanding came the power to change the course of my life. I am now well on my way to recovering the lost spirit of my youth and have rediscovered my zeal for living. I am in a good place now, but it has been a long road getting here.
With the knowledge we are gaining about PCOS, there is hope that teenage females dealing with the symptoms and physical manifestations will no longer have to suffer in the dark. No young woman should be told today that going months, even years without menstruating is normal. Hopefully, more and more health professionals are gaining awareness of how the syndrome presents itself and the serious health consequences it can bring. It is the responsibility of those of us who are aware to insist on the education and research that will result in a greater understanding by the general population of what symptoms in young women signal a need for concern. Forums like obgyn.net and the PCOSupport network are excellent tools for increasing awareness. Recent women's magazine articles regarding PCOS have reached millions of Americans, but still so much more needs to be done. Unfortunately, PCOS continues to be poorly understood, even by the most knowledgeable of researchers and physicians. Therefore, even if a young woman in her teens is diagnosed with PCOS, there is still uncertainty of what is the best treatment path to take with her. The challenge of PCOS is certainly upon us --- and it should be addressed as one of the most serious health concerns for women today. I am determined to do my part to press for answers because they are so important to so many woman --- and men around us.