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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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

Four-day pregnancy

Last Wednesday night I had a dream that my beta test was negative.

On Thursday morning I woke up, still recalling the dream, and wishing it not to be true. I found a leftover home pregnancy test and went to town. It was positive.

I snapped a photo and immediately texted it to my husband, who is working out of town for the next several weeks. He replied with appropriate emojis.

The next two days were spent secretly happy, but cautious. Sore boobs. Intermittent nausea. Fatigue. I decided not to move up my beta, which was scheduled for Saturday. That morning I woke up, went to have my blood drawn, and then waited.

Since it was Labor Day weekend, I heard back a few hours later from the doctor on duty. My beta was, indeed, positive, but my hCG was a little on the low side at 31.5. Commence Googling. I knew enough to know that at four weeks pregnant “normal” hCG levels can vary wildly. As long as the number doubled in 48 hours, things could still be perfectly fine.

I tried to spend the rest of Saturday and Sunday off of Google, and allowed myself to be a little bit excited. I had noticeable symptoms. Before I went to sleep each night I talked to Olaf and Anakin in my head. I told them to stick around, please. I was ready for this. I promised my endometritis-free uterus could take good care of them if they just stuck around.

Monday morning I went in for my second hCG check. I felt like things were on track.

It’s all too easy for me to ask myself why I even bother being happy or excited about anything when it will just be taken from me. That was my first thought when the doctor called on Monday. My levels has dropped by half. She said she was sorry. I could stop the PIO and estrogen. I should expect a slightly heavier period soon. Did I have any questions?

My husband was sitting on the arm chair to my left and I just shook my head as I finished the call. He buried his head in his hands.

This was the briefest of all of my pregnancies. Because I was only four weeks and two days, it’s classified as an “early loss.” A chemical pregnancy. It was barely real. It felt barely real, too, I guess.

We’d said this was going to be our last try. A large part of me still feels that is the right call. The emotions are raw, though. I ask myself, as if on a loop, if I’m okay with never experiencing a baby kick me from inside my body. I don’t know. Why do other women get to experience this, and I don’t? I don’t know. I never seem to get closer to the answers.

These questions and many of these feelings are wrapped up in the idea that my body continues to fail me. I’ve talked in therapy about this at length. I want to forgive my body and make peace with her. I hope that I can.

Of all of the outcomes going into this last FET, pregnant for four days wasn’t one I’d considered.

Learning not to live in fear

If there’s one key thing that I’ve learned from spending time around other women who struggle with infertility, it’s that nearly every one of us lives in fear. When we see two pink lines or hear that we got a positive beta, we can allow ourselves to be happy for a second, but that happiness can quickly turn into fear. Grave thoughts of miscarriages past don’t leave us with passing weeks. The mindset can easily become why be happy when it’s just been taken away from us before?

I’m a few days away from my beta following my FET, and am feeling the sore boobs, fatigue and twinges of nausea. But I know well that those symptoms could just be the meds. I have a positive gut feeling, though. And that makes me anxious. I feel a bit like a tennis ball mid-match. Back and forth.

I was describing to my therapist that while I have this positive gut feeling, the idea of being pregnant again is shrouded in this fear of loss.  Will we tell people — our families and close friends that know about the IVF — this time? Is it worth it?

But on the flip side, if I am pregnant and, heaven willing, am able to carry successfully, will I look back in a few years and know that I didn’t allow myself to fully enjoy the experience? (Because, for real, at this rate I’m not sure I’m going to do it again.)

And then my therapist said something brilliant: If I feel happy because I am pregnant, then give myself permission to be happy. If I’m trying to protect myself by not allowing myself to enjoy it, it won’t work. Protecting myself in this way will not make it any easier should I miscarry again. It will be awful no matter if I was or wasn’t happy or excited.

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I’d never thought of it that way before, but YES! If I should miscarry again, that would be awful. But trying to pretend that I am less invested in the pregnancy won’t make it any easier for me.

As should come as no surprise to anyone reading this, I’m not really a “the world is rainbows and sunshine” kind of person. I’m just not. The “choose happy” mantra isn’t really my jam usually.

So if I am pregnant — if Olaf or Anakin or (gulps) both of them hang in there — then I’ll take the happy moments as they come. Of course I’ll be anxious sometimes, too. Because that’s completely normal. But I’ll work on living outside of the fear. It may be challenging, but this whole damn ordeal has been so I’m familiar.

Nothing can prepare you for this

When I was in my mid-20s I briefly considered donating my eggs. At the time, my motivation was primarily financial, although I was not ignorant to the idea that I could help give a baby to someone who desperately wanted one. I’ve always wanted to be a mother, and I had no doubt that being told you couldn’t have one “naturally” could be crushing to a woman.

After some consideration I deemed my motivations too selfish and my work schedule too hectic to move forward. I didn’t give egg donation another thought.

I didn’t give another thought to that woman I could have helped either. I wish I could rewind. I had no idea, ten years later, I’d be the woman struggling to force her body do the thing that it was built to do. No one ever thinks that it will be her. No one ever wants to be the one running out of time, money and options.

My husband and I began trying to conceive right around the time we got engaged, four and a half years ago. We weren’t naive that given our age, both 31, that we were shorter on time than some of our counterparts to build a family. We certainly didn’t consider ourselves geriatric, but we could do basic math. We planned a July wedding and I sincerely thought I could be pregnant before I walked down the aisle. As long as I still fit into my dress, I would be happy.

Two years later, after many life changes, but none of the baby variety, we reluctantly were referred to a fertility clinic. After the prerequisite testing, we were given an unexplained infertility diagnosis, and I began the first of several rounds of Clomid + IUI. While an unexplained diagnosis was intimidating, I was still so unprepared for what was to come.

In March of 2015, only a few months into fertility treatments, I wrote this:

When I wonder how much longer I can go on like this, in this state of mind, it makes me feel guilty. I would give anything to be pregnant. And I’m trying to give everything I can. I am trying. But I am so tired, too.

I had no idea what it meant to be tired, then.

Less than a month later I would become pregnant for the first time. A month following the happiest moment of my life, I miscarried for the first time.

More than two years, another miscarriage, five more IUI cycles, two failed IVF rounds  and a bout of chronic endometritis later, I know what it means to be tired. I read “not pregnant,” again, on that little stick just this weekend.

When I wrote that early post I was still so full of faith in my own body. I knew I would get the job I coveted of mother, and it would all be okay. The bloated, achy, overly hormonal side effects of Clomid would be a distant memory as I rocked my son or daughter to sleep at night.

But it hasn’t happened that way. Our infertility story is much longer than we could have ever expected, and we’re still very much in the thick of it. Infertility demands so much of your time, money, body and brain space. No woman or couple has any idea just how tiring this can be.

It’s hard to see the forest for the trees sometimes. Without the child my husband and I so desperately want, I’m not yet to a point where I can say, yes, everything was worth it. I’m still waiting. I’m still tired.

We’re nearing a crossroads. I’ve given my body, my energy, our money and more than four years of our time to science. Soon, we’ll need to decide how much longer we can continue, if at all. Facing that decision is parts scary, parts sad, and a small part freeing.

My husband and I are supposed to be parents. No one could have prepared us for what that would take, when it comes to others so easily. But we will be what we’re meant to be, someday.

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Today and tomorrow

Two years ago today I found out I was pregnant for the first time. It feels like it could have been a lifetime ago. At that time, my husband and I were still noobs of infertility. We were already a little more than two years in to “trying,” unsuccessfully, but still so hopeful that we were seeking medical intervention and would, no doubt, solve the underlying issues quickly, whatever they might be. We’d just done our second IUI, but as the TWW drew to a close, I wasn’t optimistic that I’d be pregnant. My husband, unbeknownst to me, suspected it had worked because he’d noticed a change in my boobs.

When I saw that stick read pregnant early on a Tuesday morning, I laugh-cried. It was such a happy moment. Later that day I stopped at Target to pick up “What to Expect…” because I was so excited to buy it and need it.

Of course, by later that April things had changed so much.

Last April we were dealing with similar circumstances.

April sucks.

Tomorrow we’re doing our seventh infertility treatment. Another IUI — the thing that has worked — now that my endometritis has cleared. A big part of me hates that this is happening in April. It’s too full of bad juju. The flip side is that maybe this April will turn it all around. Maybe it’s supposed to be April.

Or maybe I just need to stop looking for a sign in every damn thing.

Later days, endometritis

The super annoying, potentially infertility-causing house guest in my uterus is finally gone! Following my third (and heaven willing my last) biopsy earlier this month, my chronic endometritis has cleared. Boatloads of antibiotics did the trick.

The day that I got the good news, I was actually terrified that it would be bad. I just had the worst gut feeling that the condition was still lingering, and had, perhaps, gone too long untreated leaving my my uterus permanently inhospitalable.

I’m incredibly thankful that doesn’t appear to be the case.

While the coast is currently clear, I’m eager to move forward as quickly as possible. “Quickly,” though, in infertility land almost always means waiting for your next cycle to begin. After some back and forth with the doctor and input from the most amazing nurse in the world, my husband and I landed on returning to IUI for just one more cycle.

That decision was primarily driven by financials (IUI is pocket change compared to IVF), but also by the tried-and-true approach of “well it worked before…” Said with a shrug, of course.

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Both times that I’ve been pregnant were a result of IUIs. Since both of those pregnancies ended in miscarriages, though, we’ll this time supplement the IUI with progesterone shots (Crinone suppositories historically haven’t worked for me).

I’ve started the Clomid regimen. In previous cycles Clomid has flattened me like a pancake, although it has done what it’s intended to do. I decided I was willing to deal with the side effects one last time.

Mentally, though, I’m already checked out of this cycle. Although it has been successful in the past, Clomid + IUI has failed me twice, too. I expect it will again. My expectations are low — where I hope they will stay.

This will be my seventh attempt to get pregnant with medical intervention. That number seems very high, but also not high enough given that we’ve spent more than two years and thousands and thousands of dollars doing it.