PCOS: What My Doctor Didn't Tell Me About It

Modern medicine has made great strides in understanding PCOS, no doubt about it. Ask almost any woman who is suffering through it and you'll find that they have barely scratched the surface. I am 32 years old, and developed severe symptoms at the age of eleven. I share my experiences so that girls and women enduring the symptoms know that they are not alone. I struggled for six years before my diagnosis. Here is my story . . .

Puberty is a very trying time for everyone. You are gawky and awkward. Your body makes changes you are not ready for. I was prepared for that. I was looking forward to "becoming a woman" as my health teacher kept telling us. Then it happened. Christmas day, 1986. I was so excited, and was looking forward to having it again (strange what you think as a child). But, it didn't come. I waited month after month, but it didn't come. Christmas day, 1987, it happened again, and then stopped. A couple of years went by, and nothing.

My mother was extremely concerned, but did her best not to alarm me. We lived in a rural area at the time, so the nearest specialist was three hours away. She did what she could for me, but she really didn't know what to do. By the time I was 13, my body was in complete disarray. I had grown a full beard, seemingly overnight. My beautiful, thick head of hair was falling out in clumps. I was eating 1200 calories a day faithfully as the doctor had said, but still my weight ballooned. By the time I reached high school, I was in a size 18, and still growing. I was miserable, and the doctors seemed to think it was in my head. I had no one that understood what I was going through, so I became very introverted.

We moved to another state later that year, and I was hopeful we would have a fresh start. I wanted so badly to find a new doctor, not realizing that I was costing my parents a small fortune. But, because my mother loves me, and she would do anything for me, she did. They tested and poked and tested some more. Still, they found nothing. Nothing. All levels normal. Nothing on the ultrasounds. But then this new doctor said something that changed a lot of things for me. He said, "I can't say for certain, but you could have Polycystic Ovarian Syndrome." He ran down the list of known symptoms (menstrual disturbances, hirsutism, hair loss, weight gain, mood swings, just to name a few) , and I had most of them.

My mother and I perked up. Finally a name for it! I'm not crazy. This was great! I asked him, "So, how do we treat it?" He explained that this was a problem he was not equipped to handle, and referred me to an OB/GYN. I was OK with that. I had something I could try to fix. I was excited (crazy, huh?) to get to the OB/GYN for this next appointment. He took my history and reviewed all of the tests I'd had done. He asked me if I had any questions. Where do I start? I asked about the hair on my chin, the hair falling from my head, and why I didn't have a period. To each question, he answered "You're too fat." Those exact words. He followed up by saying that if I didn't get my period going again (like I had any control over it) that I wouldn't be able to have children. I was a teenager, and that thought hadn't even crossed my mind yet. It hit me then. I started bawling right in the middle of the office as he handed me a copy of the 1200 calorie diet I was already on.

I was seventeen then. Those were a crushing few years. As an adult in my early 20's, I became very depressed and painfully shy. I became a pro at hiding my symptoms, though. I found figure-flattering clothes. I plucked the hairs from my face every day, at least, and always kept tweezers in my purse. I was good with a comb over, too, since I was visibly balding on top. More seriously, I started to develop some of the more dangerous symptoms of PCOS. I was diagnosed with high blood pressure about the same time.

Then it seemed that out of nowhere, more and more information was becoming available. I didn't have a computer at the time, but my mother called me to tell me she had looked it up on the internet and found a bunch of info. I ran straight over to her house after work. We printed off half a ream of papers, all from doctors who had been doing research on it. Doctors who couldn't tell me why, but wouldn't tell me it was all in my head.

I can't tell you how excited I got when I first saw a book at the book store about PCOS. I didn't have any money on me, so I took the one and only book they had, and asked the cashier to hold it for me. She must have thought I was a lunatic, but I didn't care. I wanted that book. I took it home and read it cover to cover. I was a mad woman, absorbing all the information I could find. It was so vindicating to know that I was not alone, and someone was trying to help women like me. This was a huge turning point for me.

I am a much older and wiser woman, though I don't believe I will ever have complete control over my symptoms. The doctors I see now still admit they don't completely understand it, and I see specialists now. I still don't have a menstrual cycle. I've lost most of the hair on the top of my head, though I do have a lovely selection of wigs. I've controlled my beard with some rather expensive laser treatments. I still don't have children. I'm still on a 1200 calorie diet, just with fewer carbs. I have lost some of the weight, but the symptoms have not gone away.

The one thing I have now that the doctors didn't give me then is hope. I know the doctors are still trying to figure it out. I don't hold it against them. They can't know everything, but I am grateful that they are still trying. I am grateful that someone is taking women like me seriously.

For other women struggling with PCOS, I hope you can learn from my experiences. I hope that you don't hide your head in the sand like I did in the early years. Since 5-10% of American women have it, people are taking notice. They are realizing that this is a serious problem. Just know that there is always hope.