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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Infertility is really just a crap-ton of waiting

I’m a few days from starting my period. While nothing tops the two-week wait (TWW) on the anxiety scale, the time waiting to start your next IVF cycle is also stressful. In early January my husband and I repeated our lab work, and I had my 8,000th mock transfer and saline ultrasound to ensure all systems were go to start my last stim cycle. Other than a high TSH (thyroid) level, I’m all set. I wasn’t that surprised that my thyroid check was elevated since I’d been off my hypothyroidism meds for about 10 weeks because it conflicted with the prescribed appetite suppressant I was on for weight loss.

[Quick update on the weight loss: Somehow I’ve managed to quell my emotional eating inner demons, and am down 29.5 pounds! I picked up good habits and flipped that elusive switch that allowed me to rethink how I approach food. Particularly sugar. Perhaps the only person more surprised with my progress than me is my husband who knew all too well how unlikely I was to follow-through with this. It certainly has been challenging, but it’s pretty nice to feel like I am crushing. it. in just this one aspect of my life. Having said that, I’m about to stim again with hormones aplenty, so we’ll see what I’m made of over the next few weeks.]

It feels like there’s nothing but waiting. It’s often infuriating. Particularly in those rare time frames when I actually feel physically and emotionally ready to go down the IVF rabbit hole again. Like, ya know, now.

The downtime between completing one cycle and starting another always varies wildly. In my case, it’s almost always been months when it comes to IVF. I did my first stim (and fresh transfer) in June 2016. In fertility terms, that’s probably 25 potentially good eggs ago. Who knows if it was one of those “wasted” eggs that was the golden one?

Then we did our first FET in November 2016. Bust. The second FET didn’t happen for another ten months. Then I got a little bit pregnant. While money was probably the most significant factor in that span of time, getting answers to why three perfectly normal-looking embryos in an otherwise healthy woman simply didn’t stick (spoiler alert: it was endometritis) was also on the list. Not to mention my emotional health.

Moving into this last cycle, we’re already several months removed from the chemical pregnancy, and we’ve decided to leave our last frozen embryo from our OG stim cycle in the freezer (we’ll test Kristoff with his future embryo sibs). Which, another aside: If Kristoff is the ONE embryo that turns out to be genetically normal after PGS I think my brain may actually explode.

While the Clomid made me insane and pack on the pounds, at least IUIs keep the pace moving. I knocked a bunch of those out in a couple of months.

So we’re into another year of this waiting. Year five. We’ve reached the five-year milestone in infertility even before we did in our marriage. How’s that irony. Just delightful.

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Letter to the new (infertile) kid on the block

Dear newbie,

Whether you know me personally or not, I was you. I was at the beginning of this supremely shitty journey once.

A brief aside: I kinda hate the word journey. It’s both overused and trite, particularly in the context of infertility. It implies a destination ahead. And many days, you’ll have one. A baby in your sights. Some days, though, that destination may need to be relief from the physical and emotional pain you’re likely to experience. I’m truly sorry that you’ll feel this hurt.

When I was where you are on this road (that word somehow feels a bit more natural to me), I had few resources to talk me through what was to come. That was lonely, and it sucked. I hope that you’re able to take an exit ramp long before where I am now, but no matter where you depart, know that you’re never alone. Infertility is probably going be the most alienating thing you ever experience. It has been even more so than the chronic depression I’ve struggled with, although I’ve found they go hand in hand for me.

If you’re reading this, then you’ve likely found that within a few Google searches you can find others online like you. I urge you to use the web wisely, though. Seek out forums, communities and blogs that can be a source of strength for you. Just read, or share your own experience. Step away when the web becomes alarmist. Reading others experiences can be helpful, but do your best not to let these stories trigger your own fears. You’ll have created plenty in your own brain. Don’t fuel them. Remember that every woman is different and none of us have all the answers. That thought alone will probably land somewhere between comforting and frightening, and that’s okay.

When you’re ready, share your thoughts and feelings with someone. That person can be your partner, but it doesn’t have to be. Not every partner will be able to relate to the myriad of thoughts and feelings you’re having. That’s okay, too. They may grieve losses and manage anxieties differently than you do. It can make you crazy, but give them space to process infertility in their own way. It’s their struggle, too. Instead, or in addition to, seek out a therapist, a family member, a friend — whom ever you can feel comfortable and safe with. Resolve offers many peer-led support groups across many cities. When you find one, I urge you to give it a try. Talking aloud does help you feel less lonely. The strength of the women I’ve met in my local group can prop up the world. I’m grateful I can share in that.

This road may get scary. I’m sorry for that, too. I hope that those periods of fear are brief for you. If you do feel yourself wearing a little too thin, though, put yourself first. Advocate for yourself with your doctor. Ask the questions. Sometimes a little more information or a less jargony explanation can help ease your fears. Remember that the end goal of a baby isn’t the only thing that matters. You do, too. You’re here now, and this road is hard.

Sometimes you will feel afraid and empty, but you’re not a failure. What your body can or cannot do doesn’t determine your worth. I’ve spent far too many sleepless nights and dazed commutes focusing on how my body has failed me. Those thoughts only multiplied my frustration and left me drained of hope. Never once were they productive. Remember to be kind to yourself.

I don’t yet have a happy ending to my story to share with you. You’ll hear a lot of stories about how your friend’s cousin’s stepsister-in-law got pregnant after she stopped trying and relaxed. Each one will probably make you want to scream and curse. That’s okay. I hate hearing them, too. The majority of people who offer these stories have no idea what you’re navigating right now. They just want to offer their support. If someone who loves you asks if they can do anything for you, tell them what you need. Or at least ask for homemade brownies during your next two week wait. Those never hurt.

You can do this. So can I.

Your fellow infertile sister,

Ashley

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Photo by David Whittaker via Pexels

What if there’s nothing left

2018. Will this be the year that we finally… no, don’t bother finishing that sentence. We all know how it goes, right?

We started with our fertility clinic in January of 2015 after trying for two years. 2018 will be the end of this road, no matter where it leads.

We’re putting together the financials for one more stim cycle, to hopefully begin shortly after the new year. I’ll pump myself full of hormones until my belly feels ready to pop, and then we’ll wait. Hold our collective breath to see if we have any normal embryos.

Last time I stimmed, my doctor retrieved 23 eggs. Those resulted in only six blastocysts. One of which remains frozen and waiting. I remember being excited to hear that we had six. I thought, well I’m certainly not going to have six kids, so we’re fiiiine. Naive. I was tested but still untested.

This time I will be nearly two years older. To my credit (since I take so little of it), my AMH is still good for 36. I have little doubt that stimming this time will be easy. Easy in the sense that my body will respond appropriately. But not easy at all.

Listen, I’m terrified that we won’t get any normal embryos after PGS testing. That’s what I just have to say. The five previously were not good, but we didn’t know that then. 3AB and her Frozen siblings, Anna, Elsa, Olaf and, then, Anakin. None of them found their home.

I liked the whimsy of having named my embryos. It brought me some levity to the science of it all. But I’m not sure I can name them this time. Really, I just want at least one to have the option of naming.

Just give me one and I’ll shut the hell up.

Maybe you’re just too fat to have a baby and other things no one said but I heard in my head

I’ve struggled with my weight for much of my adult life. I was very active in as a kid and through my teen years, and with only a few exceptions of the low-fat lifestyle trends of the 90s, I didn’t think all that much about what I ate. I started pretty steadily putting on weight in college, but for much of my early 20s remained only about a size or two bigger than I was when I graduated. I wouldn’t call myself a yo-yo dieter, but an slowly-moving, unmotivated yo-yo is a fairly apt description of my weight after 26 or 27.

Three years into fertility treatments, the scale isn’t too kind to me. It started to tick up when I started Clomid, then exploded during the transition from IUIs to IVF. Much of this was related to the hormones pumping through my body. It is also more literally tied to eating ice cream to dull the feelings of unsuccessful cycles, miscarriages and feeling like I’m completely broken. I can own that. All total I put on about 35 pounds in these three years and, in October when I met with the doctor offering a second opinion, was the heaviest I’ve ever been.

Over the course of that conversation, the new RE suggested that because of my weight, I was probably producing poor quality eggs, resulting in poor quality embryos, leading to lack of implantation. I wasn’t shocked by this assessment, but I was taken aback. This wasn’t a factor on the table with my Peyton Manning doctor. He never once said to me that I should consider putting the spoon down. I’d certainly read a bit online about BMI affecting egg quality, but if I’d asked and my doctor didn’t think it was the reason for three years of ultimately unsuccessful treatments, then it probably wasn’t… right?

In the moment, I left that RE’s office feeling absolutely deflated (like Tom Brady’s footballs… [I’m just going to keep running with these weird football analogies, so roll with it]). It was a deep cut to hear that my weight could be preventing me from achieving success. He’d told me that to take me on as a new patient, he’d want me to first lose 20 pounds. Twenty pounds caused by Clomid and ice cream and Estrace and pizza and watching everyone else become a mother.

Over the last four weeks I’ve used every ounce of brain space that I once reserved for progesterone dosages and ultrasound appointments to retrain myself to eat. Knowing myself well enough to know follow-through isn’t my strongest quality when it comes to a new routine, I joined one of the medically-supervised weight loss clinics that seem to be popping up on every corner. The staff has been supportive and has helped me address the areas of emotional eating that are the biggest triggers and challenges for me. I feel better, and I’m doing really well on their program. I’ve said goodbye to sugar (again), and have actually started to like the taste of Greek yogurt. I belong in a Dannon commercial.

I’m going to tick that 20 pounds off and keep going until we’ve pulled together the financials for another stim round. I can’t be the thing standing in my way of being a mom, so I’m not going to be.

Second opinions

The rollercoaster of emotion hasn’t stopped since my chemical pregnancy. Although I’d said before going into this IVF cycle that it would be our last one, I’m reevaluating the options. I feel pulled to continue IVF because I’m emotionally very connected to a successful pregnancy when I’ve only experienced unsuccessful ones for no obvious reason.

Last week I met with my doctor as a post-mortem this third IVF cycle. He’s a lovely, obviously caring man who has more than 30 years of experience with infertility. He’s the Peyton Manning of reproductive endocrinologists. He’s got that time and many wins under his belt; he’s consistent. Then he has a patient like me. During our appointment he referred to me, albeit very kindly, as an anomaly and his personal project. He’s determined to make me a mother in the same way that Peyton was determined to come back after neck surgery and win another Superbowl. No, this metaphor isn’t over-the-top at all, I don’t know what you’re talking about.

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As I anticipated, there’s not yet a good explanation for why five perfectly normal-looking embryos haven’t resulted in a sustainable pregnancy. He showed me the math of it and it was incredibly depressing.

So how does he recommend we move forward? The simplest possible response is another biopsy to check for my old nemesis chronic endometritis, and while we’re painfully removing my uterine tissue, reserve a sample for the ERA test, too. My lining is, perhaps, optimal for embryo transfer too early or too late for the standard progesterone window. The ERA test has been growing in popularity in the infertility community (I’d actually asked about it prior to my chronic endometritis diagnosis), but my clinic has only performed the test three times to date as they tend to be pretty conservative on new tech and labs.

Given that we have one remaining embryo, Kristoff, he also suggested that I consider another stim cycle to create more embryos and PGS test the whole lot of them to weed out the shoddy ones. We considered PGS in our first go ’round, but the added cost prevented us from moving forward.

Again, none of these recommendations came as a surprise.

What’s next? We’ve decided to get a second opinion. I really like my clinic, my doctor, and of course the greatest nurse on the planet, but my husband and I both feel like we’d be remiss if we didn’t at least talk to another doctor before making a decision. So I’ll be meeting with another doc, who has successfully helped two friends get pregnant via IVF, in a few weeks. His clinic also has a great reputation, and I’ve heard their treatment protocols are a bit less conservative, too.

 

#TheStruggleIsReal

One week down. 

As someone who struggles with depression, I often have to focus on how far removed I am from my trigger incident to move forward. It’s a coping mechanism I’ve had in place since I was a teenager to remind me that I can move forward.

I work for a large company where we have our own campus. During the workday I spent 99 percent of my time in one building. In the last week I’ve encountered seven new pregnant women. This is in addition to the handful I’d already seen in the cafe or milling about in the hallways. I can’t escape them as I’m slowing expelling my hopes and dreams onto a maxi pad. I’ve heard all of the “it’s in the water” jokes. Trust me, it’s not.

Sorry if that maxi pad bit was too morbid. I’m feeling a touch filter-less.

Emotionally I’m all over the place. My mood turns on a dime. I remind myself that it’s okay to be upset; not only am I grieving another loss, but I’m also facing an enormous decision about what comes next. I spend a lot of time feeling lost. A lot of time feeling jealous of every mom or dad who posted a first day of school photo on Facebook or Instagram. For as much as I want to believe I’ll make that same post someday, the reality is that I may not. And someday isn’t now. Or tomorrow. Or even next year.

I’ve had so much support in the last week that I should be bursting with gratitude. And I am. I am incredibly grateful for the well wishes and the amen, sistas. You all completely understand these feelings. This insane emotional rollercoaster that you both desperately want to get off and are too afraid to leave behind.

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