Tuesday, April 22, 2014

Guest Post: A's Story

***April 20-26, 2014 is National Infertility Awareness Week and I am taking part by sharing stories from women who have experienced infertility first hand. Did you know that 1 in 6 couples experience some form of infertility? Someone you know is probably struggling with infertility and you may or may not even know, since it is often a taboo subject. Help break the silence and raise awareness. For more information about NIAW, please click here. This post is the second in my 2014 Infertility series. To see more stories, scroll to the bottom of this page for links.*** 

This is the story of my journey through ignorance, confusion, diagnosis of infertility, love and loss, recovery, and more love. Some parts might be amusing, and some might be sad. It may not be the typical tale of infertility, but it's mine.

Stage 1: Blissful Ignorance
I came off the pill in May 2012 when I was 28 after taking it for 8 years. When I started taking it my periods were a little weird, but nothing too crazy. I also had acne and my family doctor gave me the birth control pill prescription to address both issues (and only casually asked on her way out of the room if I was sexually active). I had started taking prenatal vitamins a few months prior to stopping the pill in case we got pregnant quickly. Hilarious, right?

Stage 2: Dude, Where's My Period?
The first period came after 33 days, then 52, then 58, then 63. I was taking pregnancy tests every week. It was very confusing and frustrating. After the 58 day cycle, I found an OB/GYN and set up an appointment. I was lucky. She didn't think I had PCOS (Polycystic Ovary Syndrome), but she ordered some CD (cycle day) 3 bloodwork and an ultrasound. I had the ultrasound the next week.

Stage 3: PCOS Diagnosis
A few weeks later they called back all in a panic that I had the "string of pearls" appearance on my ovaries and added some blood work. They mentioned PCOS. I googled. I cried. The entire internet makes it sound like women with PCOS are fat, hairy trolls. I am none of these, and neither are any of the women I now know who share my diagnosis. I think not fitting that "look" often causes delays in diagnosis. When the next cycle got to 60 something days I called the nurse. She was annoying. "Did you start your period yet?" in the most condescending way ever. No, bitch. It's been 60 days. "60??" YES. This is why I am calling. I started a few days later and got the blood work.

The lab sheet came back with nothing out of range. This is misleading. My FSH : LH ratio was 5.1 : 12.2. A second batch came back a week later that showed elevated testosterone.

I was diagnosed with PCOS the first week of 2013. My husband and I were expecting it based on the lab work and our own research. We were given the choice to wait until it had technically been a year or start medicated cycles since it was clear I had some kind of ovulatory issue. We opted for a treatment plan of Provera to start a period, Clomid to help ovulate, trigger shot to ensure the egg gets released, and timed intercourse (TI). So romantic.

Stage 4: Pregnancy #1
I am lucky my doctor took my concerns seriously, ran appropriate tests, and monitored my medicated cycle. We started 50mg of Clomid and had 3 follicle checks. Even though the doctor seemed competent, scheduling and explaining these follicle checks was always a huge mess. At the last one (CD 18 maybe?), I saw that perfect little follicle and fell in love. Is that weird? Narcissistic? We conceived on the first cycle. I was shocked. I immediately felt like it had happened too easily and quickly and it was too good to be true. I was never at ease. At my 8 week appointment I met with a nurse practitioner. I was a little bit of a diva to the receptionist, since I had assumed that I would be seeing the board certified MD I had carefully researched and selected. The NP was very nice. She did an internal ultrasound, saw the heartbeat, and mentioned offhand that the baby was measuring a little small but that I was probably off on my ovulation dates. I wasn't. I told her that I was on a medicated cycle and knew the exact day of ovulation. She said not to worry about it and we'd check again the next week.

Stage 5: Loss
On the way to the follow up appointment, my heart dropped into my stomach. I still know the exact location along the highway I thought it was over. I pulled myself back together. I felt no pain, and had no spotting or bleeding. We got to the appointment and the tech was all smiles and wishing me a happy early birthday. I looked at my husband and he gave me a thumbs up since it looked like the baby had grown. He or she, did, in fact, have a week's worth of growth, but there was no heartbeat. Our baby was gone. I still remember exactly what we were both wearing that day. The tech rushed out to get someone. They put us in an empty exam room and we cried. I'd never seen my husband cry before. Never had I known such profound grief. I'd always felt like something was wrong but for it to be confirmed was heart wrenching.

The NP I had seen the previous week came in to chat with us. She gave me the option of waiting it out, having a D&C, or taking Cytotec. These are things I had never thought about before, but the body doesn't just disappear when the soul does. I chose the Cytotec. She told me I'd probably start bleeding in a few hours and that the worst of it would be over in a day or so. Again, lies. My husband had an out of town conference that he couldn't miss. We didn't want to be apart, so we still went. Fortunately, or unfortunately, the Cytotec didn't work. I sobbed in the hotel room, at the Starbucks down the street, in the shower, and every night before bed. We flew back on my birthday, and I picked up the second dose. This one worked. I bled for the next several days.

Stage 6: Recovery
The following months were just a fog. Any shred of religious or spiritual belief I once held was gone. I was a student at the time, working remotely. I was so alone. My husband was amazing. I found a wonderful online community of women and they really became a source of support and strength. They understood there was no time limit on grief. I also shared the news of my loss more broadly than I had of the pregnancy. I needed my close friends to know, even if they couldn't do anything.

In addition to the grief, I experienced such guilt. I felt like it was my fault and that I hadn't been a good host or a good mother to my baby. I felt like my husband could have done better and that if he had married someone else he wouldn't have had to experience that pain. As irrational as these thoughts were, it is how I felt. He mentioned at one point that he was willing to drain our account (saving for a house) for IVF if we needed to. Although it was comforting to both want the same thing, I also felt a tremendous amount of pressure.

I had an unusual recovery that included a ridiculously slow decline of betas. During the beta drop I had regular, ovulatory cycles. It was frustrating because I felt like these cycles were a "gift" from my lost little one. I decided that I would see a Reproductive Endocrinologist (RE) going forward. We purchased a memorial bench in a public park with a plaque in remembrance of our baby. I feel like the baby was a boy, but I'll never know.

Stage 7: The RE
At my initial consultation, the RE did another blood draw. He took 3 vials and froze 2. If the betas weren't negative, he was going to send the other 2 to different labs. Finally, they were negative. I got a surprise pelvic exam at that consultation! He also ordered an HSG (hysterosalpingogram) to check if my tubes were blocked, more blood work to check for the insulin resistance and thyroid stuff, and a semen analysis for my husband. Since I'd had a loss on Clomid, the RE put me on Femara instead. By now the insurance company knew what was up and sent me a pamphlet on infertility... with a big fat white baby on the cover. There is nothing wrong with big fat white babies, but that is 1) not the face of infertility and 2) let's have some ethnic diversity up in here! This RE had their own favorite brand of OPKs (ovulation prediction kits). I was like Ariel swimming around in her cave of wonders. "I've got wondfos and 'digis' a plenty, I've got Wal-Greens brand galoooore. You want hpts? I've got 60. But who cares? I'll need mooooooooore". I peed on it all. Oh, and PreSeed. You can't forget the PreSeed!

I told my family that I was seeing a specialist and to mind their own business. It's exhausting and stressful for people to constantly ask about the status of your uterus. I said I'd let them know when there was anything to know. I'm sure they were stung by the bluntness, but they respected my wishes.

Driving to the downtown office for the follicle check almost sent me into a panic attack. I have seen real panic attacks. I didn't feel like I couldn't breathe, but my heart was racing and I almost pulled over thinking I was getting lightheaded. What were we going to do if I didn't respond? Two follicles on the left side. With the Clomid cycle, the follicle was on the left. The doctor said that could be either coincidence or an indicator that maybe righty doesn't have as good blood flow or something. In the first round of 2.5 mg of Femara plus a trigger shot, we conceived again. I "tested out" my trigger shot. I still have the pee sticks taped to a note card in the bathroom. The trigger never quite disappeared, but eventually got darker. I also used chilled progesterone supplements twice a day (brr) from just after ovulation until 10 weeks, then once a day until they were gone at around 13 weeks.

Stage 8: Hopefully My Rainbow
With the exception of a total meltdown the night before our NT scan, I have been surprisingly clam throughout this pregnancy. My mantra has been "just keep dancing" because at each ultrasound (and there have been many) he has been wiggling up a storm. I know even in moments of anxiety and fear that this baby deserves the same amount of love as our first. One of the most special moments in my life so far was the first time my husband got to feel the baby's kicks. It took almost two years to get to that point, but here we are.

I am incredibly grateful and lucky to have PCOS and no other issues (so far). I know I am lucky to have responded to the  medication each time, and luckier still to have conceived. I know being out of the first trimester does not mean we are safe. I have an excellent OB, and the attitude that if I have a question or concern about my health or the baby's, I won't feel like I'm inconveniencing anybody to have them addressed. Despite being pregnant, my battle with infertility is not over. I'm still at risk for diabetes, depression, heart disease, and uterine cancer because of the PCOS.

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2014 Infertility Series

Liz's Story
A's Story
Kate's Story 
Lee's Story
Kati's Story

2 comments:

  1. Ooh good luck to A! My friend has PCOS and has been trying for 3 years to even get pregnant. She's moves past clomid to some higher drug and STILL cant seem to get any follicles and the doctors dont know why. It is so frustrating and it breaks my heart for her

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  2. I am glad you are doing this series and sharing the stories of these women for this week Jennie. This one especially touched me because outlined throughout I can see so many of my own concerns for the future.

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