On Infertility, Definitions & Statistics, Part II

I turned 39 on Holy Saturday this year, the day in the Christian calendar typically marking the grief of Jesus lying dead in the tomb. It’s a liminal day. Hope exists, but not in a triumphant way. And not without naming and marking sorrow first. Lucas and I had been talking and decided that if I wasn’t pregnant by my birthday, we would make the switch to IVF (in vitro fertilization). But IVF is so involved, it’s not a switch you make overnight or without a lot of resources, consultation, and advanced scheduling with your clinic.

We were able to secure a consultation appointment a few weeks later in early May. As directed, we cleared three hours from our schedules. This appointment was not to start the IVF process, but to gather all the information we needed so that when we were ready and the clinic had an opening in their schedule that we would know what we needed to be prepared. We saw the doctor (a reproductive endocrinologist). Up until this point, we had received able care from specialized nurses and physician’s assistants. She walked us through the typical stimulation, retrieval, and transfer cycle protocol; the statistics and success rates the hospital had treating people in my age group; and the decisions we would have to make at each step of the way. I think there may have been another vaginal ultrasound at this appointment (though I’ve had so many at this point, I’ve lost track). And we definitely spent some significant time talking through costs, insurance coverage, and financing with a woman from the billing department. More about all of this, one step at a time.

First, what is IVF? In vitro fertilization at its most basic is the fertilization of eggs outside the body and the transfer of the embryo(s) that result(s) into the uterus. But there is a lot that goes into retrieving those eggs and maintaining any pregnancy achieved through IVF. As I mentioned in the last post, because every body is unique, there are a lot of different protocols that may be followed to achieve and carry a pregnancy to term. What we’ve experienced may not mirror every IVF experience. But it’s ours and I hope it might be helpful to someone else going through it themselves or doing their best to support someone they love.

When we sat down with the doctor, one of my first questions was about the use of birth control as part of the normal IVF protocol. Apparently, using hormonal birth control to start an IVF cycle is a helpful way to stabilize a cycle if a patient has had irregular cycles and ovulation. I was particularly nervous about this because as a much younger woman, I lost a close cousin to a pulmonary embolism. Blood clots are a big part of my family medical history. All my adult life I’ve avoided hormonal birth control like the plague. Was it really necessary to start taking birth control at age 39 in order to get pregnant? Turns out, for me (because I seemed to have a fairly predictable cycle with regular ovulation), the answer was no. Getting that response at the beginning of this three-hour appointment was a huge relief and made it easier to hear and process the rest.

As I think back on “the rest,” it’s kind of a blur. It’s hard to remember what order things came in and how we walked the path from ignorance to knowing a lot of new things, and to making decisions that work for us about many of these things.

Things like:

Genetic Carrier Screening. We had to choose whether we wanted to be screened for a number of genetic diseases. Things like cystic fibrosis, spinal muscular atrophy, blood conditions like sickle cell and more. The idea behind genetic carrier screening is that if you learn that you and your partner both carry a recessive gene that could cause severe challenges for a child, might you make different decisions about your course of treatment or your path toward parenthood? (Potentially pursuing an egg or sperm donor or adoption.)

What happens to theoretical embryos in the event of death or divorce? Before beginning the IVF process, we had to make decisions (and sign waivers) about what would happen to any potential embryos in the event that one or both of us died or a separation from marriage ensued. Would the embryos retain to one or both of us? Would we choose to donate them to another couple seeking fertility treatments? Would we donate them for research? Would we prefer that they be discarded?

Statistics for achievement of an ongoing pregnancy within this practice for people in my age group. In a lot of ways, this is where the rubber meets the road. I have a paper handout with five columns and seven circles made in black ink. The top of each is “Female Age at Cycle Start.” The categories are <35, 35-37, 38-40, 41-42, >42. We fall in the “38-40” column. Though I’m grateful for my OB/GYN’s perspective, “It only takes one sperm and one egg!”, and for the reports about how many women are becoming first time mothers in their 40s, it is sobering to look at the statistics. For those under 35, the “Cumulative chance of achieving an ongoing pregnancy per cycle start” at this practice is 68.5%. For those in my age group, it’s under half that at 31.1%. That’s not nothing. But it makes clear the overall and statistical decline in fertility across time. Of the eggs produced in people my age, roughly half of them may have chromosomal abnormalities.

Preimplantation Genetic Testing (PGT). PGT is an option for any and all embryos. In the event you choose PGT, 3-10 cells from the trophectoderm of the embryo will be biopsied. (The trophectoderm is the outer layer of cells of an embryo that will eventually become the placenta.) The embryo is then frozen while you wait for test results. Test results reveal whether the embryo is euploid (has the expected pair of each chromosome and the potential for a healthy pregnancy) or whether it is aneuploid (with excess or missing chromosomes, unlikely to implant or to result in a miscarriage). Given that there is significant financial, emotional, and time cost associated with storing embryos for potential future use and with each IVF attempt, this information can be extremely important.

Info about fresh vs. frozen transfer. Assuming egg retrieval would be successful and fertilization resulted in at least one or two viable embryos, would we want to do a fresh transfer (choosing to transfer one or two embryos roughly five days after the egg retrieval, when my body was already pulsing with hormones)? Or did we want to have any and all viable embryos biopsied, frozen, and tested via PGT first, waiting to transfer for a few months until we knew an embryo was healthy and compatible with ongoing development and life?

Different options for insemination and fertilization. Once eggs are retrieved, there are a couple options for insemination and fertilization. One is as natural as it gets for the IVF cycle. Drop some sperm in with each egg and see which one penetrates the shell around the egg (zona pellucida) first. The other option is Intracytoplasmic Sperm Injection (ICSI). ICSI chooses one good looking sperm and injects it right into the center of each egg.

In all of the above, I keep referencing embryos and egg retrieval. What is actually involved in getting there? First the clinic does some cycle mapping in conjunction with their schedule. When will my next menstrual cycle align with their next opening. Though it was early May, we started looking at late July or early August. In the meantime, we could try another IUI if we wanted and we would get connected to a specialty pharmacy, order meds, and learn how to use them.

And then we talked with a really fantastic woman from the billing department to strategize how best we might pay for all of this. As I alluded to in my last post, an IVF cycle that includes ovarian stimulation and egg retrieval can cost anywhere from $15,000-$20,000 and lots of health insurance plans don’t include fertility coverage. As I also alluded to in my last post, as of early 2022, I am back on an insurance plan that does include fertility coverage.

Let me pause for a moment to share some gratitude for this fact. I purchase health insurance through the United Church of Christ, the denomination of my ordination. I’m pretty sure fertility coverage has not always been a part of their plan. I’m also pretty sure that it is thanks to the advocacy of my siblings in the LGBTQIA+ community that this coverage is now available for all people under this plan. Why/how? you may ask.

The UCC was the first church to ordain an openly gay clergy person, way back in 1972. As the denomination as a whole benefited from the spiritual leadership of folks in this community, it also had (and has) much to learn and grow on the way toward justice and full inclusion. Part of this being that a queer clergy-person who, by definition, does not have a lot of disposable income, may feel just as called to start a family as a cisgender straight clergy-person. When folks in the LGBTQIA+ community are often subject to lower paying calls, the questions of “who gets to start a family” and “who has access to advanced reproductive health care” become justice issues. You shouldn’t have to rely on a spouse or partner with a better paying job or health insurance in order to both serve God and start a family.

So now the UCC plan includes fertility coverage! There’s a $20,000 lifetime cap. It’s both generous compared to some other plans and easy to spend quickly. Our epic three-hour office visit included some strategic spending conversation with the woman from the billing department. We might want to consider purchasing our meds out of pocket instead of relying on insurance to cover them because in network meds would likely not be the cheapest and we might blow our lifetime limit on costly meds and end up spending more out of pocket overall. We settled on trusting the clinic to find the best prices for us with a specialty pharmacy of their choosing and pay for them out of pocket.

With this decided and lots more to chew on, we had a general plan.

If/when I got a period in June, I would call the clinic and they would place the order for meds. By late July, they would bring us in for a “Med Teach” appointment, showing us how to administer the first three injections that were part of our ovarian stimulation protocol.

If/when I got a period in late July or early August, I would call the clinic and they would schedule me for a vaginal ultrasound within 36 hours. (This turned into that longer, kind of scary waiting period I wrote about over a month ago.) Once that ultrasound happened and they could confirm that everything in my uterus and ovaries looked good to go, we were to start our stimulation drugs that night, choosing a time between 6 and 10 p.m. that we could maintain regularly. These were the subcutaneous injections in the smile around my belly button.

The idea behind ovarian stimulation is to override the regular hormones your body creates when preparing just one or two eggs for ovulation and instead hyperstimulate your ovaries to create many mature eggs all at once so they can all be retrieved and inseminated at the same time. This increases the chance of at least one healthy embryo at the time of transfer.

The first three nights on our med protocol were just one injection of Follistim. On day four, we added a second injection called Menopur. This injection required using a liquid diluent to break down a solid medication before it could be administered. Let me just say, if you’ve got to have multiple injections daily, it really helps to have a partner as kind and organized and solicitous as Lucas. Both Follistim and Menopur were administered at night to stimulate my ovaries to the production of mature eggs. On day six, we went in for another ultrasound in the morning to count and measure the growth of the follicles (home of eggs) in my ovaries. We also brought our third medication along to this visit. Ganirelix. This medication is used to prevent ovulation, and it was stressed to us how important it was that we not go more than 24 hours between injections of this medication. If my body ovulated one or two eggs naturally, it would blow our shot of harvesting many or any for the retrieval portion of the IVF procedure. We continued with this protocol: two shots at night, one in the morning, and ultrasounds every 48-72 hours to mark the continued growth of the follicles in my ovaries until our medical team deemed us ready for the next steps.

About nine days into this protocol (and as I’ve described, feeling juicy and like I had ovaries full of boba bubbles), we were given our protocol for trigger and taught what we needed to do for our two new medications. We were given a two-hour window to call the patient information line at the university hospitals. This would give us the time both of our egg retrieval and of the trigger shot we needed to administer exactly 36 hours before. The trigger shot was a high dose of HCG (human chorionic gonadotropin). This is the same hormone that home pregnancy tests detect to let you know you’re pregnant. In yet another weirdness of fertility protocols, the test to know whether you had a high enough dose of HCG the night before is to take a home pregnancy test the next morning. It’s kind of trippy to know that there is absolutely no way you could possibly be pregnant and also have your first positive pregnancy test ever. This injection is not the sweet little belly shots we’d been doing for the past 10 days. It's the introduction to the weeks of daily intramuscular injections that you hope will follow. Hope because during a natural pregnancy, the follicle that produces the egg for ovulation and fertilization develops into a corpus luteum. If fertilization and implantation occur, this is a trigger to the body to produce the hormone progesterone – important for maintaining a pregnancy. So in the best of all possible worlds, starting the day of egg retrieval, going through embryo transfer, early pregnancy tests, and continuing pregnancy, daily progesterone shots (intermuscular, at the same time each day) continue until eight weeks gestation (roughly six weeks post-conception).

So while waiting for the egg retrieval, we learned how to give me both the trigger shot and progesterone in oil. A nurse helpfully marked my behind on both sides with targets both Lucas and I could hit. She also gave us some pro-tips. Ice for 10-15 minutes ahead of each injection and you won’t feel it as much. Make sure to do stairs or squats or just walk around and stay active for at least 10-15 minutes after each injection so the medication gets absorbed into the body. If you can’t manage the shots, a vaginal suppository is an option. But you have to use it three times a day and need to supplement with a shot every few days anyway.

If this all seems like a lot, it is. And this is just the information. Not the emotional work of hope and excitement and disappointment and fear and grief that can and do accompany the many stages of this process, often simultaneously. I will eventually write in more detail about what happened to us during the last five or six weeks. But for now it feels important just to share this. The overwhelm. The in between. The decisions to be prayed over and made and hopefully not second guessed. An extended Holy Saturday. The space is liminal. The time is holy. Hope is present, but not certain. I’m grateful as you watch and wait with us.