Understanding PGS: Why we’re doing it

PGS (pre-implantation genetic screening) is a complicated topic. While I knew we would opt to use PGS during our upcoming stim cycle prior to a transfer very early on, I didn’t know much about it. I’d watched an animated video on the website of the laboratory that my clinic uses for PGS, and it felt a bit Schoolhouse Rock-esque, without the clever puns and music. This video could have used those. I felt like I knew the basics of what happens to the embryo/blastocyst during the PGS testing, the lab counts chromosomes, … blah, blah blah… and then following testing my husband and I would see a report on our embyros each characterized into two neat little columns — normal or abnormal.

At least some of that was correct.

I’ll say before I move on that I am not usually one of those infertiles that spends hours in the middle of the night on message boards comparing IVF stories with other women. I’m not passing judgement on the women that do that, mind you. For me, and my mental health, I have to sometimes turn down the fire hose of infertility information. I very much pick and choose when I consult Dr. Google or the message boards because when I know too much, my anxiety hits dangerous (read: 1947-era padded room, straight jacket) levels. Too much research can cripple me. I try to be well-informed about my treatment options and protocols, and I think I am, but I know my limits. I’m good without knowing that Jane Doe in Oregon also had a Lupron-down protocol resulting in 20 eggs at her retrieval and then experienced this freak thing… yeah. I, personally, don’t need to know. I advocate for myself but I also trust my doctor and the greatest nurse on the planet.

So while I knew I’d move forward with PGS almost regardless of my research, I still wanted to learn more about it. If anything, I wanted to confirm that I was making the right call about doing it, and gain confidence that we’d have some clear answers after the tests were complete.

Where did I land? Well, I will say that PGS is (still) the absolute right step for us at this point (more on that in a bit). But, dayum, I got schooled.

First, all hail FertilityIQ. Their online course on PGS is the absolute best, most comprehensive resource on the subject I’ve found. If you’re considering this as part of your treatment plan, take 30 minutes to watch their helpful videos and read through their detailed written material. Deborah and Jake, the founders of the site, host the videos and I’d like to be friends with them. They’re clearly knowledgeable (fertility clinic vets so they totally get it), but they also include interviews with doctors on both sides of the aisle in this PGS debate. The course has easy to understand patient examples, visuals and just a ton of great information. Honestly, it’s not only worth your time, but in my opinion you owe it to yourself to understand the intricacies of such a complex fertility topic.

This post isn’t sponsored by the site, nor do I have any relationship to it, I am just a big fan. Also, I probably don’t need to mention this but I am NOT. A. DOCTOR. I am a fellow infertile sharing her experience. 

Remember when I said that I thought after PGS all of our created embryos (and Kristoff) would be put into two nice little black and white buckets? Nooope. Because mosaic embryos are a thing. As a woman lumped into the unexplained infertility category I’ll say they are a potentially confusing, frustrating thing. I don’t need more unexplained science, world! I need answers. The FertilityIQ videos and text were extremely helpful in explaining not only what mosaicism is, but that there are questions I need to ask my clinic about their policies on identifying these gray area embryos. (Aside: And because I now knew to ask this question I got an answer about my clinic’s policy! #winning)

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What this all comes down to is that I’m glad I did the research on PGS. While the idea of mosaic embryos doesn’t kinda make me want to cry in the corner, simply because it’s just more uncertainty when I’ve had my fill of that, I’m glad I’m armed with this information to better advocate for myself and my future blastocysts. I can ask the questions of my clinic, talk to a genetic counselor if I’m in a position where we only have mosaic embryos available, and then decide what’s right for us. If any of that happens.

Here’s why PGS is right for us at this moment in time: I’m 36. I’ve had two miscarriages, a chemical pregnancy and three failed embryo transfers. Other than chronic endometritis, three years of infertility treatments and countless tests have not brought us any closer to a baby. This road is ending for us soon, with or without a biological child. I’m tired. We’ve reached our debt ceiling. PGS will allow us the best possible opportunity to have that baby. We will carry more debt with us because of it, but we’re going for broke this time (perhaps literally as well as figuratively). This is it.

If there’s one thing I feel really positive about heading into this last stim cycle, it’s the decision to have our embryos tested. And honestly, I really need that sliver of hope.

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Desperately positive and hopelessly negative

When you’re infertile, there rarely seems to be a middle ground in anything. Emotionally, I am certain that my next fertility treatment will be successful one moment, and I’m a dumpster fire of despair the next. Nothing will ever work, I tell myself as often as I silently say this is it.

Starting this last round has probably amped up these disparate feelings. I’m two days into my estrogen (Estrace) regimen to build up my uterine lining pre-transfer, and my emotions are already on 11. Plus, my feeling nauseous. I asked my husband last night if he remembered me feeling sick during my last FET cycle when I started the estrogen, but neither of us recall it. It’s funny how every cycle is just a little bit different. Funny in an oh lord what’s next way, not in a haha way.

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As I’ve written about before, I see signs in everything. There’s already so many in this last round. Despite my best efforts to plan, my transfer of Olaf and Anakin will be after my husband has left for a three-month new job training. One day after. This, of course, makes me sad. If the transfer does work, he missed it, and he’ll also miss almost my entire first trimester. Which means I have to get my own damn ice cream at midnight. If it doesn’t work, I’m alone to process it. If it works and then I miscarry again, then just commit me to the psych ward because I’m likely to break.

Another sign in the positive column is that my husband got this new job at all. He’s been stuck in a crappy job that he hated for years and no leads had panned out in a very long time. In fact, the last time he got a new job, we were also apart. Two days after our wedding he left New York to interview in North Carolina for his (still) current job, and less than two weeks later he moved here. We spent the next five weeks of our newlywed lives hundreds of miles apart until I could move South as well. Major life change seems to equal time apart for us.

The final sign is that, if this transfer sticks, my due date would be sometime in April. And previous Aprils have sucked hard. The birth of a rainbow baby would certainly have a lot of meaning during that difficult month…

One last time: Olaf and Anakin

I’m in a weird place fertility-wise.

After several months of considering and discussing our next steps, we’ve decided to do one more FET before pursing non-treatment options in earnest. I didn’t come to this decision lightly, of course. I say I here, because it was primarily my call. My husband has graciously allowed me to steer the ship since we began fertility treatment two and a half years ago, and he weighs in when he has strong feelings one way or another about something. While this decision-making compromise can feel lonely for me at times, I’m ultimately grateful that he understands it is important for me to dictate what happens to my body. The feminist in me has trouble with that phrasing, but I’m going to leave it be. Infertility is complicated and does affect both partners.

Much of the continuing conversation about how to proceed happened between me and my therapist, actually. Last fall, after our second failed FET, my therapy sessions started to revolve around moving forward. I questioned whether I was ready to try again. What if that meant another failure? Or worse, another miscarriage.

One of the very important things I had to start working through was if I could forgive my body for failing me. Following my diagnosis of chronic endometritis earlier this year, I started to make peace with myself. This was the reason I wasn’t pregnant and once it had cleared, I felt almost renewed.

That feeling of renewal was short-lived.

I’ve worked hard in therapy to better understand myself and accept that, without unlimited resources at my disposal, perhaps my body cannot sustain a pregnancy. I’m still working on this acceptance. In many ways, it feels just as emotionally painful as my miscarriages. Accepting that I can’t do what I want is as much a loss.

So the decision to conclude our treatment following this last IVF cycle didn’t come easily. But we’re preparing to move on.

My period should arrive this week, we’ll shell out the cash, and I should begin the preparation to transfer two of our last embryos, Olaf and Anakin (Kristoff will remain frozen for the foreseeable future, provided O and A survive the thaw).

So I’ll be here, singing “One Last Time” from Hamilton under my breath. Apt and giving me all the feels.