When my husband and were married five years ago at the ages of 37 and 38, we knew that the window was closing fast on our ability to have children, and we knew that we were already at high risk of miscarriage or infertility. After my first pregnancy ended in a frustrating 6-month long “missed miscarriage” at 6 weeks, we were willing to consider fertility treatments pretty much as soon as I started my periods again.
I had no idea what I was getting in to
I’m one of those take-things-as-they-come people — I hope and plan for the best and do my research on the shitty stuff once it’s applicable to me. Maybe it’s because I’m Sagittarian, but I have always figured that if the worst happens, I’ll figure it out, and so far that’s worked out for me.
Therefore when we found ourselves with a less than 24 hour window to decide whether to start in vitro fertilization treatment or risk losing the ability to have multiple children, I said yes to a process that I only knew through bits and pieces of my friends’ experiences years before.
Here’s what I wish I’d known before starting down this journey that ended (spoiler alert) with us deciding not to have kids.
1. Everything is negotiable.
Our first consultation with the fertility clinic was more like a sales pitch than a doctor’s visit. Looking back, I can’t believe I paid hundreds of dollars for a nurse to walk us through a slide show of how pregnancy works and how the chances of becoming pregnant increase exponentially with each IVF attempt, then to be served an estimate of what various treatment options might cost.
Our consultation was concluded with a series of blood draws, which my insurance covered. The results of those tests revealed that my egg health was in serious decline and waiting even a month could mean no babies. Because of where I was in my cycle at that point, I had to either start the hormones within 48 hours, or wait another month. When you’ve been living month-to-month wondering if you’re pregnant half of the time for literally years, waiting another month seems interminable.
We said yes, and paid all the money and ordered all the drugs.
Was that really necessary?
Long story short, as we became more familiar with the clinic, the way the drugs work and how discretionary the pricing is, we realized that the initial pricing given was not set in stone. After round one failed and we waffled on trying again, we were offered a deal — because we’d already paid in full for everything up to confirming pregnancy, they would redo the first steps for just a couple grand.
Do your research on the drugs
Even more negotiable were the drugs — fertility hormones are BIG BUSINESS and if you don’t have a generous employee benefit to cover this, it’s often an unexpected added expense to the tune of several more thousands. Unfortunately I only realized how badly these specialty pharmacies wanted our business after giving my credit card to the first company that called — within an hour, I had two more pharmacies calling to get me to order from them.
Before you order the specialty drugs, ask your clinic how many pharmacies they work with, then obtain pricing from each of them. Feel free to mix and match your pharmacies to get the lowest pricing on everything. Even though we had a short time window to decide, looking back I had time to take this step if I’d only known better.
You might not need everything right away
It’s also worth asking about which drugs you need to order right away and which can wait — your clinic should tell you this, but may not unless you ask if they are as busy as most places here in Chicago.
For example, most women give themselves a one-time “trigger shot” a strict 36 hours before their egg retrieval, but you can usually get that from a local pharmacy the day before rather than mail-ordering it from the specialty drug companies that sell the Follistim and Menopur. I saved $50 around each time by opting for a local spot over the mail order place on this.
Get pricing for all the drugs and their substitutes
Ask for pricing on both Follistim and Gonal-F — these are the most expensive drugs and my understanding is that these do the same thing, but the pricing of each will depend on the agreement your pharmacy has with each drug company. Most doctors will order Follistim, but indicate that Gonal-F is an acceptable replacement or vice versa.
My pharmacy gave me a hard time about this, and because I was in a time crunch and didn’t understand the difference at the time, I just went with the Follistim. When my clinic found out that they didn’t honor the replacement at a lower cost, they basically pressured the pharmacy into giving me a refund — proving that it really is big bucks.
Finally, if you’re planning to do a frozen transfer like we were (we opted for PGS — the genetic testing — so we knew it would be frozen), don’t buy the Endometrin uterus prep drug til you know you have an embryo to transplant. We made this mistake and it was a cool $800 worth of drugs we never needed. To their credit, our clinic reimbursed me for this, but it took all my powers of assertion to make that happen.
2. Be very clear on how out-of-network procedures work.
If you have health insurance that covers some of the costs, your clinic will want to run all of that through your insurance first, which at least helps if you have a deductible. One thing to be aware of is that the anesthesia for your egg retrieval can be a very expensive add-on and is considered something your insurance should cover, but ask your clinic ahead of time how that works because it’s often out of network, which means the provider can charge you whatever the hell they want.
I had enough experience from the prior-mentioned missed miscarriage to know that the “mobile” anesthesia company in Chicago is an out-of-network provider for everyone, so if you have insurance, it will be billed to them first, then you’ll basically get stuck with whatever they want to charge you and a little dent in your out-of-network deductible. I opted to have my clinic charge me their “self-pay” rate for this part, since I knew that the amount they charged me before was almost twice as much.
3. Everyone’s reasons for doing IVF are different.
If you’re reading this, chances are that you’re experiencing some level of infertility as well, and I am here to tell you that I feel for you. I’m not assuming that what you are going through is at all what I went through, but one thing I learned rather quickly is that the reason I needed to try IVF was different from the reasons that everyone else I knew and none of us had the same story.
Even more frustrating (and now I’m probably preaching to the choir) is how many well-meaning people reminded us to just “relax and enjoy each other” and it would “happen on its own.” I held back from responding with the actual facts of our situation, because I realized that most people don’t actually know how female fertility actually works, even people with 6 kids (maybe especially?), but the bottom line is that each situation is different, so you do have to trust your doctor to know the nuance.
There are a few things we will all experience: the shots in the belly, the endless blood draws and probing of our vaginas and the anxiety of waiting to hear how many eggs they got, if any. I think the rest of it is so unique, and it makes me marvel at how any of us exist at all — the making of a baby requires so many things in perfect alignment, that if nothing else, this whole experience solidified my belief that we are all here for a purpose and we are all meant to be here. Also, we all have burdens we carry, so let’s be kind, eh?
4. Even if you do everything perfectly, it still might not work.
Here’s the shitty part. I’m pretty Type A and I’m positive I did this IVF shit exactly right. And yet, quite simply, I waited too long. Despite multiple fully developed eggs being withdrawn and fertilized with my husband’s sperm, none of my eggs were healthy enough to become embryos. You can do it all exactly how you’re supposed to and it still just might not work. Science can do a lot of really cool stuff, but it can’t turn back the clock on my old eggs.
I’ve personally come to the place where I am glad it didn’t work — I wholeheartedly believe that we are not meant to have children, and I’m also glad we did IVF. I am completely at peace with the results, knowing that we tried, and the Universe basically said, “Nah, this isn’t for you, but trust me, I’ve got your back.” I hope that if this process doesn’t work for you that you are also able to come to this same place of peace and acceptance.