When I first thought of sharing my story it was overwhelming. The idea of making my very private struggle public was scary. I am the type of person that is very private. I keep my internal struggles to myself and haven't even shared this story with many people who I am the closest to. After much thinking and soul searching I have figured out that it is important I share my story in hopes of helping someone else who is going through something similar.
Knowing what I know now I believe I have had PCOS my entire life. When I was small the pediatrician told my mother that I was over weight and I needed to be on a diet. I was in 2nd or 3rd grade. My mom had good intentions of following the doctors orders. It was then that she began logging all the food I ate and weighing me each morning. That is when the struggle with my weight started. Up until then I was ok with my body. After that I was conscience of every pound, every inch, and every new bit of fat or lump on my body. I first got my period the summer between 5th and 6th grade. I couldn't really talk about it with my mom. You just didn't talk about things like that in my house. I had learned in health class that it takes a while for your period to become regular so it never alarmed me that my period was never regular. As I got older my period became less and less frequent. By the time I had graduated from high school I was lucky if I got my period once every 6 months or so. Like most teenagers, I was very moody. I was often depressed and had my first encounter with a therapist at the age of 14 or 15. My teenage years were something I would really like to forget. I was overweight my whole life and high school was awful. I tried exercise and eating very little. When that didn't work, I tried not eating at all. I could not loose any weight. That is where my horrible self esteem began. The therapist blamed it all on depression. At one point, my hair began to thin. My once long thick hair started to fall out. That is the only thing I did complain to my mom about. She said "Oh, it's normal". Then I showed her my hair brush filled with hair and she thought it might be an issue. A trip to the doctor later I was given the task of counting all the hairs that fell out of my head. Every night I had to one by one count all the hairs in my brush. Up until then I didn't know that you loose on average 75 to 100 hairs a day. I was loosing twice that. Based on my thinning hair and my being overweight, the doctor tested me for diabetes. Those test came back normal and I was given a prescription for Rogain. As the years went on I became more comfortable with my body. I was no longer ashamed of the way I looked and once I was in college I actually allowed myself to do normal teenage things. My period was still abnormal. I started bleeding and for almost two months I suffered in silence. One day I finally was so sick that I broke down and told my best friend the problem I was having. She took me and we went to her Gynecologist. I had never been to one of those doctors before and it was a very scary experience. Her doctor was a man. How was I suppose to have a man down there? One who I didn't know? That was a problem for me so to fix the situation I was allowed to see the nurse practitioner. She put me on the pill after my describing all the problems I had been having for years with my cycle. She told me that what I was experiencing was not normal. The pill was not a solution to my problems though. After being on it for a few months I realized I was gaining a lot of weight. I tried and tried to loose it but it wouldn't go away. I took myself off the birth control pills because I needed to stop gaining weight. My cycle went back to being once every 6 months but I stopped gaining all that weight. When I was 20 or 21 I started having awful anxiety attacks. The first time I had one I thought I was going to die. I was sure I was having a heart attack. I took myself to the doctor who referred me to another doctor, a Psychiatrist. I was once again diagnosed with depression and given Anti-depressants. Those drugs made me feel like a zombie I couldn't take them for very long and eventually took myself off of them again. I learned to know when I was about to have an anxiety attack so I could control them on my own. Months went by and my cycle was never regular. I had been with my boyfriend for a long time at that point and thought "maybe I'm pregnant." Several pregnancy tests ,all negative, later and still no period for months I took myself back to a new OB-GYN. This one was a woman. I though I would be comfortable and she would understand my issues. I went in to the office and a tiny little woman of Indian descent came in to talk to me. She had a very thick accent and was hard for me to understand. She talked to me for just a few minutes and said she was going to do an ultrasound. I was confused because I knew I was not pregnant and I though that an ultra sound was for pregnant women. I laid back and she started pointing at all these spots on my insides. She said "do you see that?" I said yes. She said" I believe you have Polycystic Ovarian Syndrome. You are fat and you will probably never have children." She told me to get dressed and left the room. I was 22 years old, in tears because all my life I had dreamed of having children and this cold hearted woman took that away in 2 minutes. I couldn't even think straight. I cried the whole way home. I got home, laid on the couch,and cried more. When my boyfriend came in he didn't know what to say I couldn't breath I was crying so hard. He said "What do you have?" I really didn't have an answer because she really didn't explain it to me. I had to do something so I called my insurance company. I needed a referral to a new doctor who could tell me about this. The sent me to see the most wonderful man, Dr. Steve. He explained to me what I had and that I could have children some day. He put me on Metformin. Since my period had never been regular I didn't think twice about it when I started to bleed for months at a time. It wasn't until I was so tired I couldn't keep my eyes open and still bleeding I decided there was a problem. I called and ended up in the hospital to have a DNC. A few months later it started again and back into the hospital for another DNC. I am so happy to say that every since the second DNC my cycle has been like clockwork. Things were going along quite normally and my husband and I had decided we were ready to start trying to have a child. I was on Clomid with no results. The prescription was doubled with still no results. As the years had gone on I tried to stop obsessing over the idea of having a child but with each year that went by and each baby shower I went to it got harder. My friends all had children and still I had none. I would cry myself to sleep at night. When I turned 30 I took it really hard. In my head, by the time I was 30 I should have already had two children. It had always been my plan. I didn't have any. I wanted to get pregnant so desperately and it just wasn't happening. I found myself again very depressed and sad. Then I started having problems I was getting so sick. I just didn't feel right. I thought I was getting a yeast infection but it never started to itch it just hurt. I was in excruciating pain all the time. I went to see Dr. Steve and he looked at me and said that this could be bad. He did an ultra sound and discovered I have cysts on my ovaries that were huge. One was the size of a plum. The other ovary had a cyst the size of a grapefruit. He said he would have to operate on my yet again to remove the large cysts. I was scared but he fixed me before. I went to the hospital that day with my husband and my mother and it was then that I was told the most horrific thing I could ever have been told. That the large cyst had grown to be the size of a grapefruit and it grew around my ovary. My ovary was crushed and would have to be removed. I started to scream. Why was all this happening to me? I just wanted to be normal and have a child. I had so many problems and the PCOS made it so much harder to get pregnant and now here they were, telling me that they were taking out my ovary! I just started to cry. The last thing I remember as they were putting me out was Dr. Steve telling me it was going to be ok and tears streaming down my face. When I woke up I was in so much pain. What hurt the most wasn't the idea that I had an incision like a c-section with no baby to show for it but that when I woke up I was told that my sister in law had just had their baby. That was awful. The day I got out of the hospital we went to see the new baby. I couldn't even look at it. That little boy was 6 months old before I was even able to hold him. I have been told I can still get pregnant with one ovary. Just a few months ago I was checked to see why I haven't gotten pregnant now that my cycle is regular. I have been living with PCOS for 13 years now. I now see that all the problems I have had over all these years were the beginnings of my PCOS. I believe in my heart that I will have a child one day. I have come to accept the idea that it may only be one but it will happen. I have to have hope.
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