Amanda's story

Amanda's Journey with PCOS

I had no idea what my doctor was talking about when she told me I had PCOS (polycystic ovarian syndrome). In fact, I don't think she knew.

I was 16, and had been having horrible pains in my lower stomach for about 6 months. Pains that sent me to the emergency room twice a week for months. The doctors would pump me full of pain pills and send me on my way. They had no idea what was going on. I was getting ready to move in with my fiance at the time, trying to finish high school, you know living life. And then, I had a health issue that no body could help me with. I had the stomach pains, no period and I was growing hair in spots that I was sure there wasn't supposed to be hair, at least on a girl. I shaved almost everyday, going to great lengths to not let my fiance know I was shaving as much as he was. I was a healthy weight, so what was going on?

When I was finally able to get into the doctor, she did an ultrasound and showed me the white circles all over my ovaries. Telling me they were cysts, and there was no cure for them, that I would never have kids as I couldn't release an egg from my ovaries. She handed me the pamphlet (a whole page long), prescribed birth control pills, and sent me home. I was shocked that there was no research on this, no one I could call and ask questions about, no internet pages to look things up on. I was on my own. I started a support group on line, the first in my state. It took 1 year and a lot of practice, but I was finally able to hand it over to women who had more time to devote to the site.

I was the youngest person to be diagnosed in the state with PCOS at the time (according to the doctor) and the first in my family. My mom and grandma had similar symptoms, but back then, there wasn't any thing they knew about PCOS, in fact they didn't ever find the cause of my mom's symptoms. She had 5 miscarriages before she was lucky enough to have me ( she had my 2 sisters after wards). My grandma had diabetes and my mom developed it. The doctors said it was genetic, to prepare ourselves and eat better, so we would have less of a chance to get it. No one made a connection between it and pcos.

I had always wanted a family. My fiance and I got married, intending to start filling our home right away, as he wanted kids as much as I did. 6 months later, we still had no luck. When I went back to the doctor, I had to explain to her what PCOS was. I had continued to do research, still finding little out about everything I needed to know. I was horribly moody, to the point of picking fights just to fight. I was up one minute, down the next, crying and hiding in our room. I had no desire for sex, I felt horribly “ungirly”, and was severely depressed. One night, I was in the emergency room, my husband had long ago stopped going with me, and found out I had my first miscarriage. I was devastated. I went home, went to bed and never even told my husband. We had no clue that I was even pregnant, as we were told we would never have kids. I wept for days, and felt bad about not telling my husband that we lost a child, but I thought if he couldn't care enough to go to the hospital, why did he care about the outcome. Irrational maybe, but that was the feeling I had. The harder we tried for kids, the worse our marriage got, until a little over a year of marriage, we ended up divorced.

The internet became a wonderful thing. More and more women were being diagnosed with PCOS and looking for answers. There were more sites that had experiences of these women and the symptoms they were having. I began to feel less alone, but more frustrated at not getting answers. I couldn't even find a doctor who knew what I was talking about. I joined chat rooms, support groups, and talked to every doctor I could.

I finally met a guy that wasn't worried about having kids. I never fully explained what pcos was; how could I when I didn't fully understand it? I knew I couldn't have kids, that I had unexplained problems and that was about it. We got married and moved from my home town to Wisconsin. There, I had to find a new doctor, but, surprise! I found one that I DIDN'T have to explain what I had. She already knew! She was even considered an expert. She told me that fertility is a large problem with women who have pcos, as was insulin resistance. I wasn't diabetic, had no problems with my blood sugar, so I didn't get that connection. My doctor told me that many doctors thought that pcos was genetic, passed down from mother to daughter. That's when we made the connection that my mom and grandma probably had the same thing. I was put back on birth control to slow down the hair growth, and induce a regular period. When I was ready to try for pregnancy, I was to go back. Other than that, there was really nothing else to be done.

Fast forward about 10 years. I have gotten divorced, again, found a wonderful husband, and moved back home. My husband knows all about the pcos, in fact he knows as much as I do. I have learned that pcos is connected to insulin resistance, high blood pressure and cholesterol, as well as a host of other health problems. I am on Metformin for diabetes, take natural remedies to help control some of the symptoms, and am other wise healthy. I am finally ready to try for a family. One of my pap smears came back abnormal, so I was sent to a specialist. I had a biopsy, the next pap was still abnormal. The doctor scheduled a leep to try to take some of the abnormal cells off my cervix. The day I went in, I told my doctor I was having cramps, sore boobs, all the signs of a period (of which I have had a total of 3 on my own, ever!), which made me happy as it was proving the Met was working (I was no longer on BC pills). She did a pregnancy test, which came back negative (no big shock) and then did my leep.

I was in the hospital the next day for cramps. The doctor did another pregnancy test, that one came back positive. I was stunned! My husband was shocked, we were both thrilled. I was high risk, with one miscarriage already, but was allowed to continue work, as much as possible with the horrible nausea I had. I was so ready for this little miracle, so happy to finally be a normal person again. It didn't last long, at 7 weeks, we lost the baby. This month, we would have been parents. The doctor said that most first pregnancies end in miscarriage, but that doesn't make it any easier. I am 32, if it took this long, will I ever have the chance to do it again?

After we lost the baby, I had 2 normal periods and then, a month long one. They doctor put me on progesterone to induce a period and clean my body out, reset my uterus is what she said. I am going back in 2 months to find out about clomid.

Pcos has taken a lot away from me. My ability to have children naturally, my womanhood, control of my emotions, and has affected every aspect of my life. Have I given up hope? Hell no! There is always hope. I have been through heartache, pain and sorrow. I have lost 2 children, and still don't have answers to many of my questions. But, I have found a good doctor, many natural remedies that help, a great husband, and I still have time. Maybe not a lot, but it's still hanging around. :)

My heart still hurts for the babies I have lost, and this month hasn't been easy for me. But, I will try again, I will fight through the heartache, the pain, the mental fatigue and every other issue that comes with pcos. I am a woman, no matter how this disease makes me feel. And I will win.

You can reach me at Amanda_781@msn.com. I am happy to answer questions, clarify any concerns. Be nice! It's my first blog! :)