Welcome to the 2014 Voices of PCOS blog series at The Infertility Voice, in honor of PCOS Awareness Month!
Losing and Finding Hope with PCOS
By Nicole M.
Editor’s Note: Please be aware this post discusses pregnancy and parenting.
When I was a teenager, I had very erratic periods. When I was about 15 my period disappeared all together for 6 months, which naturally worried my parents, and, no, there was no way I was pregnant. My mom got me an appointment with a NP/midwife to see what the problem may be.
I went to my appointment and had a pelvic exam done. My mom was brought in so we could discuss what she found. She said that everything seemed fine to her. My ovaries felt a bit “immature” and recommended birth control to help control my cycles. My mom did not want me going on birth control at that age, but we felt reassured that I was just having normal irregularity.
Over the next few years, my cycles stayed irregular, but usually appeared every few months. When I was 18, they disappeared for an even longer period of time, so we decided I needed to see a doctor. I got an appointment at the gynecologist office my mom went to. My first visit was very different than my visit with the midwife. It was almost like a consult in her office. No paper gowns or stirrups.
She asked me many questions: how long were my cycles? Did I have trouble losing weight? Did I have excess body hair? After I answered all of her questions she told me that she believed I had Polycystic Ovarian Syndrome. She ordered blood work to check my hormones and an ultrasound to check my ovaries. These would help determine if I had PCOS.
After all of results were in, I went back for a follow-up appointment. It was determined that I did in fact have PCOS. She explained a bit about it and told me that my treatment would be birth control, to ensure I had a period each month. She said that in the future, when I want to get pregnant, to come to them and they could help. She didn’t go too in depth, but children were the last thing on my mind at 18 years old and single, so I wasn’t concerned.
The next 4-5 years I took my birth control so that I would get my period. I got into a serious relationship with my now husband. I went off birth control and we decided not to “try” (ie. chart cycles, temp, etc) but let nature do its thing. Three years after stopping any form of birth control and lots of disappointment later, I still had not become pregnant. We were really wanting to have a child at this point, so it was time to ask my doctor for help.
I went to my doctor in March 2012 thinking that I would get a referral to see an OBGYN or some sort of specialist. I set up a consult appointment and explained that I was diagnosed with PCOS when I was 18 (I was then 26). My husband and I wanted to have a baby and we were having trouble. I told him about my erratic cycles and the fact we had been not preventing for three years without any luck. He seemed to have some knowledge of PCOS and ordered blood tests and an ultrasound, as well as a follow-up appointment.
About a month after the consult, I had my follow-up appointment. Most of my blood tests were normal. He had checked everything from my cholesterol to my blood sugar to my hormones. The only thing that was slightly off was my hormones, specifically testosterone, which I had been expecting. My ultrasound did not show anything “remarkable” according to him. All of the results together had confirmed to him that I indeed had PCOS and insulin resistance.
He explained his plan of action to attempt to treat me himself. He was going to give me three prescriptions. He gave me something to induce a period (Provera), in addition to Metformin, which is commonly used for treating diabetes, and Spironolactone, a high blood pressure medication. I did not have high blood pressure, but he prescribed it to me in hopes that it would lower my testosterone levels.
Metformin can have some side effects, so my doctor had me ease into my final dose. I would have an appointment with him each month, and he would order blood tests to check my hormone levels. The first month everything was going smoothly. I saw the doctor after I got my period and he instructed me to continue with what I was doing the following month and made me another appointment.
The next month was not smooth sailing. I was experiencing a lot of side effects from the Metformin and after I took the medication to induce my period nothing happened. I returned to his office and told him what I was experiencing but he didn’t seem concerned. He wanted to double my dose of Spironolactone to see if that would help my hormone levels and have me take another round of Provera before my next appointment. If I didn’t get my period by the next appointment, he was going to give me a referral to see a Reproductive Endocrinologist.
I returned home feeling really frustrated and quite sick from all of the side effects. The next morning, after doubling my dose the night before, I woke up feeling terribly sick. My husband was TDY in the military at the time, and I remember telling him on the phone how terrible I was feeling. We agreed that it was best to stop taking the medications and just get the referral at the next appointment.
Over the next two weeks, I started feeling better, but not back to normal. Something was weighing on the back on my mind since the Provera didn’t work the month before… what if I am pregnant? After so many years of disappointment, I grew accustomed to missing periods and negative pregnancy tests. I figured that would have been the first thing my doctor would have wanted to check for when my period didn’t come, but he never brought it up.
Convinced that it would be negative, I picked up a pregnancy test, just to ease my mind. I took it in the middle of the day, too impatient and anxious to wait until the morning. Almost instantly the bright + showed up. I had to blink to be sure I was actually seeing a positive. I ran out to show my husband, who was equally as shocked as I was. I actually went back to the store and picked up two digital tests, just to make sure it really was positive.
After three positive home tests, I called up my doctor to get a blood test. Once the blood test confirmed, I was referred to an OB. Going off of my last period I was about 12 weeks along. At my first OB appointment, I had an ultrasound done. We were ecstatic to see our little baby appear on the screen with a strong heartbeat.
It felt unreal that I was actually pregnant. The next 6 months were full of baby prep, doctors appointments, and anxiety. I was terrified that something would be wrong since Spironolactone is not safe to take while pregnant. Each appointment reassured me that baby was doing wonderfully and was healthy. At 24 weeks, we found out we were having a baby girl.
On February 29th, 2013 we welcomed Evangeline Grace into the world. The name Evangeline means “good news,” which is exactly what she was after our journey to become parents. It was a bumpy road, but it was so worth it. I know this is not the end of our infertility journey as we plan on expanding our family again in the future. Next time I will have the support and knowledge of my wonderful OB/GYN as well as something that I thought had I lost: hope.