Rachel Guillory is an avid journaler, proud union member, and bird lover. She grew up in Slidell and lives in the Seventh Ward with her husband, their scrappy Chihuahua mix, and half a dozen citrus trees.
THE LONELY WORLD OF INFERTILITY
At first, I couldn’t even speak the word out loud: infertility. It felt so final, like a criminal sentence. I imagined other people talking about me: “She can’t have children, bless her heart.” I imagined lashing out at unsuspecting coworkers who asked if I had kids: No, I don’t, and that’s a very painful subject, actually. I was so afraid of this word that I put off going to a fertility clinic longer than I should have.
What is Wrong with Me?
After debating whether to have kids for years, my husband and I finally decided to give it a shot. Six months went by, though, and nothing happened. I didn’t understand what we were doing wrong. I am a cis woman married to a cis man. We went to couples therapy for years to make an informed decision about whether parenthood was right for us. Why wasn’t this working?
I found a new OB/GYN, recommended by several friends, and asked her if she thought something was wrong. She sent my husband off for a sperm analysis—all clear. “Do you want a referral to a reproductive endocrinologist who can run some more in-depth tests on you?” she asked. No, I wasn’t sure I even wanted a child badly enough to go through fertility treatment. In vitro fertilization (IVF) seemed to me like a desperate measure for desperate people, and surely I didn’t fit in that category. “Just keep trying then,” she said, “and buy those ovulation tests with the smiley face, they’re easier to read.”
Another six months of failure went by, and my body slowly began to fall apart. I had been tracking my periods on an app since going off birth control, and the data I’d collected revealed that each month my periods grew longer and heavier, with more intense cramps and even gastrointestinal issues while I was menstruating. My belly was swollen and sore, and none of my pants fit.
One night my period started as I was getting ready for bed. Great, another month of failure. But the pain was so intense I couldn’t sleep, and I found myself wondering if I should take expired opiates left over from the time I threw my back out. It was an all-consuming pain that pushed all thoughts out of my mind, robbing me of words and time and logic. My husband found me rocking back and forth in the bathtub, hugging my knees to my chest.
The next day I googled a condition I’d always feared: endometriosis. Nearly every symptom matched my experience: Very painful menstrual cramps that may get worse over time. Chronic lower back pain. Digestive issues like diarrhea, constipation, and bloating. Pain during sex. The last symptom on the list was infertility—defined as the inability to get pregnant after a year of trying if you’re under 35, six months if you’re older. I sighed and requested an appointment with my OB/GYN.
It takes endometriosis patients an average of 10 years to get a diagnosis. I’m lucky—my doctor believed me and took action right away. She found a couple of large cysts on my ovaries via ultrasound and recommended laparoscopic surgery. It’s the only way to diagnose endometriosis and remove the cysts and lesions causing the pain. While I was on the operating table, she said she’d check my fallopian tubes for blockages. That should give us some answers as to why I couldn’t get pregnant. Depending on how widespread the lesions were, though, I could risk losing one or both ovaries or tubes. “I’d gladly lose an ovary if it means never experiencing that level of pain again,” I told my husband. I scheduled the surgery.
Luckily, I didn’t have to lose any of my organs, but my doctor found that my right tube was blocked, and endometriosis was indeed the culprit. It was validating to have an answer, but that diagnosis felt like being condemned to a life of pain and suffering. There is no cure for endometriosis. You can only manage the symptoms by limiting ovulation and menstruation, primarily with birth control, which wasn’t an option for me while trying to conceive. Adding to this struggle, recovery from surgery had been much harder than I expected, and I was depressed, unable to even enjoy Mardi Gras. I was sick of hearing platitudes from family and friends. I decided it was time to explore medical intervention.
Embryo on Ice
At our first appointment at the fertility clinic, the reproductive endocrinologist explained that—based on what my OB/GYN had found during my surgery—the inflammation clogging my right fallopian tube was preventing eggs from passing through. The cysts on my ovaries also limited their ability to properly recruit and release eggs each month. That’s why we hadn’t had any luck getting pregnant so far.
“We can try less aggressive measures, but I’ll be honest with you—IVF is likely the only way you’ll be able to get pregnant,” he said. Only then, terrified of what my future looked like, did I realize I truly did want a baby. Spite has always been my biggest motivator.
My first egg retrieval that summer did not go as planned. My doctor was out of town, and his colleague, seemingly unprepared for the level of endometriosis inside me, could only retrieve two eggs from my ovaries. “It only takes one!” a nurse encouraged us, while an older nurse lectured us on the merits of adoption. Despite this rough start, we were shocked to learn a week later that one of the two eggs fertilized and grew into an embryo. “We have an embryo on ice,” I said to my husband, amazed that we had somehow beat the odds. “‘Embryo on Ice’ sounds like the weirdest act at Disney World,” my husband said, as I mimed a tiny embryo skating across the table with my fingers. We pinned all our hopes on that one lonely embryo, that it would soon become our baby. But when my doctor transferred it into my uterus, it was gone 10 days later—poof. It simply didn’t implant.
A Numbers Game
At first, I told many of my loved ones that I was starting IVF treatment. I knew I’d need all the support I could get. A few well-meaning but ill-informed friends initially responded with “Exciting!” and “Congratulations!” I don’t blame the people in my life who reacted this way. Before going through this process, I too thought IVF was a guarantee. In a year or two, I assumed we’d have a baby. It’s science, right?
I had to personally unlearn a lot of misconceptions like this. Not only is IVF not a guarantee, a single IVF cycle is more likely to fail than succeed. According to the Centers for Disease Control’s IVF success calculator, a 38-year-old with endometriosis like me has a 30% chance of achieving a live birth after one egg retrieval. After three retrievals, the chance of success goes up to 60%. On the flip side, that means one-third of IVF patients who’ve done multiple rounds of treatment over several months or even years could wind up with nothing to show for their effort.
IVF is also not a luxury or a means to create “designer babies.” Without access to this treatment, and specifically the fertility coverage I’m lucky to have through my employer’s health insurance, my husband and I would have no shot at becoming parents on our own. People find themselves unable to conceive on their own for a variety of reasons—male-factor infertility, polycystic ovary syndrome, preserving fertility while undergoing immunotherapy, plus social factors like being queer or a single parent by choice. IVF, like all other forms of assisted reproduction technology, is an essential part of reproductive health care for everyone who needs it.
When I first considered IVF, I thought the hardest part would be the injections and the cost. To my surprise, however, it was the waiting. At every stage of the process, time drags as you wait to see if your body and your genetic material can clear several hurdles. Did your ovaries respond properly to the stimulation meds? Was your doctor able to extract enough eggs from them? Did they fertilize and grow into embryos? Are any of your embryos viable, or are they missing chromosomes due to your age and egg quality? Will it implant and stay there? Or do we have to start all over?
The stress of waiting out each of these steps made it difficult to plan my life out more than two weeks at a time. After my second egg retrieval failed and my chances of creating a healthy embryo began to shrink, I shut down emotionally. It was too painful to share bad news over and over again. Then there were the occasional ignorant or insensitive comments from family members, health care providers, coworkers, neighbors—everyone seemed to have quick, easy answers for getting pregnant. “It just takes time!” they’d tell me confidently.
I started making vague excuses at work, pulling away from my friends, avoiding family holiday gatherings, and faking happiness for the people around me who seem to get pregnant so much easier than me. Infertility robbed me of control, dignity, and choices in building my family. I became bitter and resentful that my loved ones didn’t understand what I was going through.
Infertility affects one in six people globally, with that number growing each year as more and more people like me decide to pursue parenthood later in life. Yet it’s still a taboo subject. Research has shown that people with infertility have similar levels of anxiety and depression as those with cancer, heart disease, or HIV. Can you imagine if everyone fighting these chronic diseases had to do so in secret? What if we extended a similar level of compassion and support to people who need medical interventions to create their families?
Cautiously Hopeful
For the past several years, my husband and I have existed in a liminal space between childlessness and parenthood. We’ve had one foot in each world, and yet we belong in neither. In undergoing IVF, we have become deeply committed to becoming parents, but at the same time we’ve had to accept the possibility it might not work for us.
Over a year of nonstop treatment, I have endured three egg retrievals and two frozen embryo transfers. Before attempting another embryo transfer this spring, I opted for two months of Lupron injections, which shut down my ovaries and induced a temporary medical menopause. My doctor believed it would suppress my endometriosis and reduce pelvic inflammation, improving the chances of our next embryo implanting. The side effects were brutal—insomnia, constant headaches, hot flashes—but it seems to have worked. As of writing this, I am currently pregnant for the first time ever. And yet, even now, despite my doctor reassuring me that my miscarriage risk is in the single digits, I’m still scared to say it out loud: I am having a baby.
Resources
American Society for Reproductive Medicine
reproductivefacts.org
Society for Assisted Reproductive Technology
sart.org
illustrations by Victoria Allen
