Once Down the Treatment Rabbit Hole You Are Never Done

The Untold Stories of IVF

Once Down the Treatment Rabbit Hole You Are Never Done

January 31, 2018 Firsthand Experience 1
Treatment

I am a Montessori preschool teacher with infertility. Seven years ago my husband and I did a year of treatments including four rounds of IUI. All of our treatments failed. We never got pregnant, and we never knew why. The diagnosis after treatment remains “unexplained infertility.”

Infertility treatment was one of the worst times in my life.

It is just a big source of chronic, unresolved grief. I’ve worked hard to minimize its impact on my daily functioning.

It honestly NEVER occurred to me that I couldn’t have children. It just isn’t like it seems in the movies. It’s a long, hard road.

Treatments were unlike anything I had ever considered. You start by sitting in a room with (in our case) a medical student giving more details about your sex life than you can imagine. They measure your waist (to track how much you are bloating), count your eggs and your sperm. They pump radioactive liquid through your uterus and force it out your Fallopian tubes to determine if there is a blockage and flush them out (a painful test and, for me, “inconclusive” results). There is all kinds of blood work. Then they tell you when you can have sex, tell you to stop exercising because your ovaries are going to swell so much they can twist (I gained 30 pounds). You stop drinking everything (caffeine, wine), start taking folic acid and supplements, and you keep a journal meticulously tracking your sex life, your symptoms, etc.

You watch YouTube videos your doctor sends. Your husband gives you shots in your buttocks that make you feel anxious, irritable, depressed, and bloated. You contemplate fears about multiples (you imagine yourself with quadruplets and consider what you would do if you had three – would you selectively reduce?) I was in total denial.

With each successive failure, you worry less about multiples. By the end, if they told me there were 20 good sized eggs, I would have said “Go ahead and try; we’ll see what happens.” It seemed so improbable. You drive two hours from your house (in our case, in bad weather on snow-packed roads, winter in Colorado) so you can be at the clinic first thing in the morning. They want a fasting blood test at each visit a minimum of three times a month for ultrasounds and frequently more. It felt like every medical student in the program had taken a turn finding my ovaries. The eggs have to grow to a certain size, and if they aren’t there by visit 3, you come back every single day until they are, so they know when it’s time for the “trigger shot” to release the eggs without missing the window.

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When the eggs are big enough you take the trigger shot exactly 12 hours later. They schedule the procedure for exactly 24 hours afterwards. Your husband needs to be there to provide ‘the sample’ no matter where he is or what business trip he is on, no matter the time of day. You schedule your life around the treatments and don’t make any plans you can’t break on a moment’s notice with no explanation.

If you miss the window (the eggs release before the procedure) the entire cycle is ruined and everything – the money, the drugs you took were for naught. My husband really struggled because he travels for work. I went to almost every appointment alone.

There is fleeting happiness and hopefulness when you feel exhausted, emotional, really bloated (at each visit, they share how many inches you’ve gained) and you think maybe, just maybe, it worked.

I got cysts, crazy mood swings, a weird bump-thing on my eye, and had really painful cramps taking the medications (apparently all normal). And on top of all that, there is the horrible failure.

Then you get to tell your husband that he is still not going to be a dad. Sometimes you sit and hold his hand while you both cry, and then you get to pay the bill. It happens that the day you find out your cycle failed (and you get your period) also just happens to be “Day 1” of the next cycle; so in between cramps and crying because it didn’t work, you get to shoot yourself up with more hormones in the hopes that next time will be better. We did this four times. Our last time failed on Christmas Eve (the worst Christmas ever).

You spend time trying to figure out what you did wrong: Are you infertile because you are too fat? You drink too much coffee? You don’t eat well enough? You’re too stressed? You use the wrong deodorant? (Yes, I really contemplated this – endocrine disruptors). You work too much? Your husband drinks beer? Your husband travels too much? Your husband wears briefs instead of boxers? Your husband was around too many hazardous chemicals on boats and construction sites? You’re too old? You’re being punished? You don’t deserve it? You’re not worthy, not ready?

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One time we went for treatment at the clinic and a couple checking in had been successful. They stood in the waiting room gushing about how happy they were, and the doctors were so happy for them, and we had just failed another cycle. All I could do was cry. I kept thinking “Get these people out of here.”

I was stressed, tired, angry, resentful, and extremely hormonal! I was so angry, bitter, resentful — and envy is the most horrible, vile, feeling a person can have. When friends are having their third child, and you can’t feel authentically happy for them, you feel horrible.

I didn’t realize the drugs have a cumulative effect. By the fourth attempt, I was completely crazy and horribly sad.

There was no one to talk to … my friends and family had children (and don’t want to hear you cry about being infertile for the umpteenth time, and besides, they have kids to put to bed). In treatment you can’t exercise; you can’t even have a drink. I took up meditation to try to deal with the stress. I bruised my hand banging it on the patio railing one day sobbing about how unfair it was; another time, I put a hole through a wall. I missed 32 days of work (in four months), incurred more debt than I care to disclose, and I still didn’t have a baby (nor even have any better understanding of why we could not have one).

At the end of treatment, I got one of those satisfaction surveys from the clinic, asking me to rate my satisfaction, and I wrote I didn’t get what I wanted; of course, I wasn’t satisfied!

For their part, once you go down the clinic rabbit hole, you are never done. There is always “something else” the doctors can do. I felt the way Christopher Hitchens described when he got throat cancer – he was certainly going to die before they had tried “everything.” There is IVF, egg donation, sperm donation, surrogacy (and the “holistic” treatments: acupuncture; dietary changes; naturopathic medicine; Mayan abdominal massage).

Luckily for me, I knew a girl in college who was an egg ‘donor.’ She was a beautiful Afghan girl from Nebraska who had run away to escape an arranged marriage, and was using egg ‘donation’ to try to pay her way through college along with waiting tables. Unfortunately, they botched her retrieval procedure, punctured her bladder, and all the money she made selling her eggs she ended up spending on medical costs. I knew there were things I would not do and places I would not go. I think egg ‘donation’ is completely unethical and horribly exploitative.

Clinics prey upon poor girls trying to get through college in their advertising because the kind of people who can afford an egg donor want a college educated girl to be the mother of their child.

As a teacher, I wonder how those conversations explaining origins go later in life between parent and teenager. You think explaining adoption is hard, try “Your mom and I wanted a baby and couldn’t have one, so we paid a poor girl we’ve never met, your biological mom, who was just about the age you are now, to give us her eggs, and in exchange she got to go to college for another semester.”

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I thought treatment was going to ruin my marriage (it had already ruined sex). I’m thankful we’re still married (infertile couples are three times more likely to divorce). I’m thankful I am a preschool teacher because I get to vicariously experience a little of what parenting is like, and what children are like. I think I understand better than most what a miracle children are.

But, despite all that I’ve written, I can tell you, five years later every month, in the back of my mind (at least until menopause, I think), there is hope; and every month, there is also predictable disappointment. My rational mind tells me that the opportunity cost (the toll on your marriage, work, physical and mental health) is great and that treatment is a bad investment.

Mostly, I try to stay busy and focus on what might be possible for me in my life. I remind myself that everyone experiences sadness; no one gets everything they want. And it’s okay to be frustrated and disappointed, and it’s okay to be sad and grieve.

You hear so many anecdotal stories of treatment success but I had no idea what it entailed, what it cost, or how seldom it works.

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One Response

  1. Mina says:

    Very well written, thank you!!

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