IVF: One Damn Thing After Another

The last weekend in September, Jeff and I went to our lake cabin in northwest Iowa to close things down for the season. He had the day off, so he left early Friday morning and I headed out after my last class ended. The drive is about three hours, which meant that somewhere between Mankato and Blue Earth, I was going to have to pull off the interstate and find some place to inject myself. 

In the parking lot of a humble prairie gas station, I crawled into the backseat, prepared the syringe, and unbuttoned my jeans. As I pinched a little roll of belly fat and lined up the needle, I caught my reflection in the rearview mirror. I couldn’t help but think of that meme. 

*Record scratch*

*Freeze frame*

Yup, that’s me. You’re probably wondering how I ended up in this situation. 

I was wondering that myself. 

I never wanted to do IVF. I mean, no one really wants to do IVF, but I really didn’t want to. Throughout the half decade we’ve been battling infertility, I came up with a litany of reasons why, for us, IVF was a bridge too far. It wasn’t practical to spend that kind of money on a gamble. It’d be selfish of us to invest so much in having our own child when there are so many in the foster care system who need loving homes. IVF is a racket that takes advantage of people at their most vulnerable and heartbroken. 

But these were just lies I told myself to cover up the real reasons I didn’t want to do IVF. In truth, I was just scared.

Scared it would leave us in financial ruin, that it would be too hard on our marriage, that we’d buckle and collapse under the pressure and then I’d lose the only thing that really matters in my life. Mostly, I was afraid that it wouldn’t work, and then I’d have to finally face the fact, once and for all, that I will never have children.

But all along, I also had an intuition that IVF would be our only hope. After our third failed IUI, we went to England for a couple of weeks, spending much of the time cruising very slowly through the beautiful hills of Surrey on a narrowboat. It was one of those trips that cuts to the core of what you know in your heart you really want from your life, and I came back with a clear resolve about our next steps. The day after we arrived home, we had our first consultation at the IVF clinic. 

As we waited to hear our names, I looked around at our fellow infertiles and wondered if they felt as naive and lost as I did. Though I’d learned a lot about how the reproductive system works (or is supposed to) over the past year, I knew that nothing had truly prepared us for what we were about to get ourselves into. Starting with the cost. 

Unless your clinic actually takes your insurance, which is rare, you have to pay all costs up front. For us, these started with the couple hundred we spent on the initial 10-minute consultation, followed by hundreds more for all the diagnostic tests we’d already done but were required to do over again. After the first week we were already invested for roughly $1,400 and we weren’t even in sight of the really expensive stuff. 

We met our doctor again a few weeks later for what’s called a “regroup” appointment, during which she walked us through the results of all the tests and gave us our “protocol” – the program of drugs, ultrasounds, and blood tests I’d need to undergo to prepare my body for egg retrieval. She called mine The Kitchen Sink Protocol, as in “we’re just gonna throw everything but the kitchen sink at ya!” 

Like every other doctor I’d seen, she’d found no discernible reason to explain why we’d never managed to get pregnant. With nothing solid to go on, she was going to give me everything. 

An IVF cycle consists of four stages: ovarian stimulation, egg retrieval, fertilization, and embryo transfer. The first part, ovarian stimulation, is a 10-day period during which you take an abundance of drugs meant to stimulate your ovaries to produce as many eggs as possible. It’s an incredibly taxing and honestly rather dangerous ordeal to put your body through, so before you can even begin this stage, called “priming”, your hormone levels have to drop to a baseline. This is achieved, bizarrely, by taking birth control pills. 

I’ve had irregular periods for years, so I was not surprised when, rather than dropping by day five like it’s supposed to, my progesterone stayed elevated well into the second week of my cycle. Until it fell, I wouldn’t be able to start the ovarian stimulation phase. To complicate things even more (because why should anything be easy?), I had developed an ovarian cyst that just kept growing larger. It was hard not to be discouraged. I could see my 40th birthday just over the horizon and Jeff would be leaving for deployment soon. Time had never really been on our side, but it especially wasn’t now.

Around day 11, I went in for yet another ultrasound and blood test, which revealed that my follicles were growing nicely (yay!) and my progesterone had begun to drop (amazing!), but before we move on, I’d need to have that massive cyst drained (…wait what?). 

This part gets a bit gory so I encourage you to skip to the next paragraph if you’ve got a weak stomach.

If you’ve never had an ovarian cyst aspirated, let me tell you, you’re missing out. The procedure involves an ultrasound wand and the longest needle I’ve ever seen in my life, which is used to puncture the vaginal wall in order to access the cyst and suck the fluid out of it, through a tube, and into a vial. Or in my case, six vials. The best part? No anesthesia. I can say without a doubt that it was the most painful experience I’ve undergone in all my gynecological life. 

“So if you were going to compare it to a sports ball,” I said to the doctor, “about how big would you say it is?”, thinking he’d say ‘marble’ or maybe ‘golf ball’.

He tilted his head to the side and studied the ultrasound screen for a moment. 

“… I’d say it’s about the size of a small grapefruit.”

I lay there, speechless, while the nurse had to run to the next room for more pus vials. A fucking GRAPEFRUIT? Just sitting there inside me, all this time, while I rode my bike and did yoga and carried on completely heedless of the grapefruit in my pelvis that it could have ruptured or twisted around my ovary, resulting in much worse pain and agony and quite possibly the loss of my ovary altogether? Also, why the hell is there no anesthesia? 

My ovarian cyst was roughly the size of the grapefruit Jeff is holding

So I guess it could have been a lot worse. I comforted myself with this knowledge, and the relief that I’d finally been cleared to start the stim phase, but I’d be lying if I said I was hopeful. There were so many obstacles we still had to clear, and the trauma of just getting to this point had already set me reeling. 

Right now you might be thinking ‘trauma’? Really? I get that it’s stressful, but isn’t that going a bit too far? Actually, some psychologists have begun to characterize infertility and its related treatments as a traumatic experience, as described in this recent piece in the New York Times. And if you could have seen me after the countless phone calls to my insurance company, begging them to just send me my prescriptions already because I needed to start taking them tomorrow and if I don’t start taking them tomorrow then we can’t do the egg retrieval and if we can’t do the egg retrieval then we can’t have a baby and WHAT DID I DO TO DESERVE THIS???

Most major insurance plans don’t cover IVF. Or they cover some infertility treatment (once you’ve exceeded your max deductible, and then only a portion, and only on “approved procedures”), but not medications, which can add another $5,000-$10,000 to the cost of treatment. I’m lucky that my insurance plan does include a lifetime max on infertility treatment – certainly not enough to pay for all of it, but enough to make a small dent. It also covers up to $1,300 for medications, which is laughable. Remember the Kitchen Sink Protocol? They should call it All The Drugs, because that’s what I took. All of them. And they weren’t cheap. 

Here’s a crazy thing about prescription drug coverage: the price on each drug varies dramatically depending on how you pay, so a drug that costs $2,000 if you pay out of pocket might cost $4,000 if you use your benefits. You can imagine how quickly that $1,300 benefit allowance just disappeared, like it was never even there. 

For added fun, my insurance company makes you order what they call “specialty” drugs like infertility meds through its “specialty” prescription service, which has to then pass on the prescriptions to its “specialty” pharmacy, located in freaking Texas. If you’re thinking to yourself, “wow that sounds complicated, they probably screwed it up once or twice”, you’re right. In the week leading up to stimming, I was on the phone with them twice a day, making sure that all eleven goddamn prescriptions would be approved, processed, packed up, and shipped to my home in Minnesota in time for me to start taking them. Trauma.

I came home from work after the Cyst Drain (yeah, I went back to work, I’m so badass. Also, we had a department meeting), and unpacked all my medications.  Laid out side by side, they took up the entire dining room table. Over the course of the next ten days, I took the following: 

  • Menopur (2 vials, injection, a.m.)
  • Follistim (300 units, injection, p.m.)
  • Saizen (.4 mL, injection, p.m.)
  • Clomid (100 mg, oral, p.m)
  • Dexamethasone (50 mg, oral, p.m.)
  • Ganirelix (300 units, injection, p.m.)
  • Pregnyl (1.5 cc’s, intramuscular injection)
  • Lupron (10 units, injection, p.m.)
  • Estrace (2 mg, oral, twice/day)
  • Doxycycline (100 mg, oral, twice/day)

Ovarian stimulation is the most delicate, crucial, and risky part of IVF. Each of these drugs is meant to either stimulate egg growth and development or prevent the ovaries from releasing them too soon. Artificially jacking up one’s hormones to such an unnatural degree carries obvious risks, the most prominent being ovarian hyperstimulation syndrome (OHSS), which can cause torsion or rupture of the ovaries and in severe cases, serious illness or death. Even scarier, the number and quality of eggs retrieved determines the success of every other step, from fertilization to implantation to viable pregnancy. The idea that my chances of someday holding my baby in my arms relied on my ability to correctly mix a double-dose of Menopur each morning can be summed up in one word: Y I K E S.

The Kitchen Sink Protocol (All The Drugs)

I won’t bore you with a detailed rendition of the medication routine. My memories of that time are kind of foggy anyway, owing perhaps to the fact that I stumbled through it in a caffeine-withdrawal haze. I remember setting a twice-daily alarm on my phone to make sure I took them at the same time every day; worrying constantly that I’d forget or screw it up and then we wouldn’t have any eggs; my poor belly freckled with tiny pinprick bruises. But I did it. I made it through. I even bought myself a Nespresso machine to celebrate.

On the morning of stimulation day 9, I went in for my ultrasound and blood tests. These revealed that I had several good-sized follicles and my hormone levels were right where they should be, which meant I was just about ready for egg retrieval. Later that day I got a call from my nurse with instructions to do my trigger shot (Pregnyl, intramuscular, in the ass) and a surgery time. You’d think I’d be excited, but I was about to hit the lowest point yet. 

The problem with the appointed time – Sunday, October 6, 8:00 a.m. – was that it was the one date on the calendar that Jeff couldn’t be there. His Air Force unit was preparing to deploy to the Middle East in a few weeks’ time and that day was the absolutely-crucial, set-in-stone, cannot-miss pre-deployment preparation briefing or in-processing (or whatever military jargon-y thing they call it). There was no negotiating or understanding; he wouldn’t be there. To me, this had two devastating implications:

  1. We’d have to use frozen sperm. Even though everyone at the clinic assured me that it would be fine, that sperm quality didn’t vary all that much between fresh and frozen, I was convinced that it wouldn’t work. My eggs wouldn’t fertilize and everything, all the stress and shots and thousands of dollars we’d spent, would have been for nothing. 
  2. I’d be alone. At one of my appointments I’d crossed paths with a post-surgery woman in a wheelchair pushed by her partner and I thought to myself “that will be us soon, and maybe I’m a little scared, but Jeff will be there with me”. But he wouldn’t. I’d be alone. 

And just to take things from shitty to absurd, within minutes of getting the news that my surgery had been scheduled on the absolute worst day possible, I got a call from my dog’s vet. It was just as she’d suspected – his blood tests had come back positive for lyme disease. Fan-tastic. I had to laugh when I saw the name of the drug he’d been prescribed: doxycycline. Literally the same drug I was taking to ward off infection from my egg retrieval surgery. We were all in this together. 

That Friday night was one of the darkest of my life. I felt depressed and hopeless on a level I’d never known. After a quick bite for dinner, we stopped at the grocery store for a few staples, including the caramel swirl ice cream I’d gotten hooked on in the absence of chocolate (caffeine). I couldn’t get out of the car. I’d held myself together through dinner, but now I felt a flood of tears rushing to the surface and I just sat there crying, repeating “I’m so alone, I’m so alone.” Poor Jeff didn’t know what the hell to do with me, other than go in and get the ice cream himself. 

By Saturday night, I felt a little better. By Sunday morning, I was ready to get the show on the road. I think I’d come to terms with the fact that we’d done everything we could. It was in the embryologist’s hands now, so I might as well just relax and let the professionals take it from here. All I had to do was lay there. 

All dressed up for egg retrieval

When I came out of the anesthesia, I saw the lovely smiling faces of my mom and sister, who’d come to drive me home and bring me glasses of water and toast until Jeff got home from drill. By then all I was bummed out about was the fact that having surgery on a Sunday meant I wouldn’t be getting a day off work. 

About a week later, the clinic called with some wonderful news. Of the eight eggs my doctor was able to retrieve, six of them successfully fertilized, and all six embryos made it to day 5, the point at which they can be biopsied for genetic testing. Often used with older IVF patients like us, preimplantation genetic screening (PGS) determines whether your embryos are chromosomally normal. When you’re younger, you have a much higher ratio of normal to abnormal embryos, but by age 39 those ratios even out and then start to reverse after 40. Implanting only chromosomally normal embryos greatly improves your chances of a successful pregnancy and live birth. Of our six embryos, four tested normal (three genetic females, one genetic male, in case anyone’s curious). 

In the months following this first phase of IVF, my anxiety has dropped significantly. The list of things I lay awake at night worrying about has dwindled down to just two: whether our embryo transfer will be successful and if so, whether I’ll miscarry. I try not to dwell on these thoughts; I try to keep it positive. I’ve heard a lot of women say that they feel like they’re different people after having gone through the crucible of infertility, and I know exactly what they mean. My injection bruises have faded, but this experience has left other scars that I’ll probably always carry with me. The sense of isolation, of hopelessness, the loss of control, the shame and self-loathing and always feeling that there’s just something wrong with me… how could I not be forever changed by that? 

Last night, as Jeff and I were driving to our favorite pizzeria, we were talking about what we were going to order, and I said that I had to enjoy my glasses of wine while I could, because hopefully they’d be the last I had for a long time.

He was quiet for a moment, seeming to gather his thoughts.

“Dear,” he began gently, “I think we need to agree not to let this define us. Even if it doesn’t work, we still have a wonderful life, and wonderful friends, and adventures and things to look forward to.” And then he said something I’ll never forget. 

“I think that this has the potential to break us, and I don’t want it to.”

He said ‘us’ but I know he mostly meant ‘me’. After standing by my side watching me fight the toughest battle of my life, seeing the toll it’s taken on me, I can understand his concern. If after all we’ve been through, this road ends with no pregnancy, no baby, then yeah. It could very well break me. 

But I think maybe infertility has changed me in another way. I really really hope our embryo transfer takes. I want it more than anything. I’ve also contemplated a future in which it doesn’t. It would be a tough blow, but not the end. I’ll have Jeff, and we’ll have house projects and vegetable gardens and bike rides and a narrowboat, and if that’s all I get, it will still be a better life than I could have ever dreamed of. You could call it resignation; I prefer equanimity. If nothing else, infertility and IVF have taught me that, no matter what happens, I’m probably going to be okay. More and more, I’m okay with that. 

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