The pessimistic take is that there isn’t any incentive for anyone to study the health risks to egg donors because the system as it stands now seems like a win-win-win: Fertility clinics get business, egg donors are well compensated, and infertile couples have a better chance to conceive a baby. An embryologist[*12] I spoke with who manages the lab of a well-known fertility clinic on the East Coast told me: “In the early days of IVF, everybody talked about the concerns of the drugs putting women at risk for certain cancers. Now, it’s just so swept under the rug. And before the question even comes out of people’s mouths, REIs [reproductive endocrinologists] say, ‘There’s absolutely no clinical evidence to suggest it,’ ” the embryologist continued, referring to the potential long-term health risks associated with fertility medications. “The question isn’t even allowed in the room anymore.”
The bottom line is this: The absence of information on egg donors has led to inadequate attention to potential health risks in egg freezers. And both groups aren’t appropriately counseled about the nature of that absence of information. Which brings us to the issue of informed consent. In the United States, the informed consent agreements that fertility clinics give to egg donors include minimal information on long-term risks. And the information they do provide is based on studies of infertile women rather than egg donors—and doesn’t include the crucial fact that this is a different group.
There are no known risks. That’s how most fertility clinics characterize the possible association between fertility drugs and health concerns, particularly cancers.[*13] The problem is with the word “known”: Can we really say there aren’t any long-term adverse effects associated with hyperstimulating ovaries unless such effects have been systematically researched? A 2020 New York Times article titled “What We Don’t Know About I.V.F.” summed up the issue well with a quote from an NYU School of Medicine professor: “We have no idea what this level of hormonal stimulation at this time in a woman’s life might be doing to her body.” All women who take fertility medications and undergo ovarian stimulation, especially more than once, should be told that such risks amount to a big fat question mark. But they’re not. Instead, patients are told there is no evidence proving harm, when in fact there remains considerable uncertainty about the true extent and severity of ovarian stimulation’s potential long-term health risks—especially to egg donors and egg freezers.
The podcast episode about Jessica wasn’t the first cautionary tale I had heard about the potential correlation between fertility drugs and cancer, but it was the most alarming—until I met Lesley. A nurse in Colorado, Lesley froze eighteen eggs when she was thirty-five and going through a divorce. She was driving to work one morning when, on the radio, she heard an interview with a Google employee who had frozen her eggs and used the company’s fertility benefit to pay for the procedure. Lesley felt like biology might be passing her by, and egg freezing sounded like a good idea. “It seemed harmless,” she told me. Lesley mentioned it to her mom, had a consultation at a fertility clinic, and afterward thought, Why not? Kind of expensive, but seems worth it. Using some of her savings, money from her parents, and some help from insurance (they covered a portion of the medications), she froze her eggs. Eighteen months later, she found out she had breast cancer.
Lesley’s biopsy showed that her cancer was highly hormone-driven. When she brought up with her radiologist and fertility doctor the possible connection between the egg freezing medications she’d taken and her cancer diagnosis, “they wouldn’t even open the door to go there. It was a hard stop. It’s really something that seems like it’s not talked about at all even though, logically, there seems like there would be a correlation.” While undergoing thirty rounds of radiation and a radical mastectomy—meaning the whole breast, lymph nodes under the arm, and the chest wall muscles under the breast are removed—Lesley met several other women battling cancer who also had been through fertility treatment. She learned more about how bodies have varying abilities when it comes to blocking estrogen receptors and metabolizing harmful toxins, which can make someone more susceptible to disease.
“I think we’re all these hormonal Frankensteins,” she said, sounding almost in awe of something she’d long known as a nurse but now understood in a much more personal way: the major influence hormones have on our bodies and our health. “Looking back, I probably had a ductal carcinoma in situ”—cancer cells present in her breast’s milk ducts, meaning non- or pre-invasive breast cancer—“that probably would’ve stayed dormant for forty years…and then I go and pour fuel on the fire by pumping myself up with all those hormones.” Lesley, now remarried, does not plan on using her frozen eggs. “I feel disillusioned. The trust has been fractured. And then I think, what would having a baby mean for my chances of a cancer relapse? I don’t want to have a baby and then not be there to raise it.” Looking back at her egg freezing experience, Lesley told me: “I have these eggs now that I paid a fortune for, but it doesn’t seem like it was worth it.” Her biggest regret is not doing more research beforehand. Ultimately, she told me, she wishes she hadn’t done it.
Learning about the longer-term unknowns of egg freezing that are rarely discussed between fertility doctors and patients made me frustrated—a bit angry, even. Concerned, too: I already worried when I felt a small cramp that it was another cyst on my ovary, that I was going to lose the ovary. Now I was afraid if I froze my eggs in the next few months I’d just be trading that fear for this other paranoid fear in which I’m just hoping I don’t develop a random cancer. I reminded myself that the journal articles and studies that did indicate a link showed correlation, not causation, between fertility medications and cancer. But the disquieting lack of long-term safety data, and the unsettling personal stories I’d absorbed, gave me serious pause—more than anything else I had encountered thus far on this journey.
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Even though I now lived in Houston, I had decided I would fly back to New York to freeze with Dr. Noyes. I had forgotten to tell the fertility clinic I had moved, though, and it had been a long time since our last communication. The ball was in my court; if and when I was ready to freeze, the next step was working with the clinic’s nurses to schedule the process around my menstrual cycle, including going off the Pill, before starting the injections.
I dug around my desk in The Bungalow looking for my notes from my egg freezing orientation at the clinic. The two-hour session had been similar to the one Mandy had attended, with a handful of other women and couples. Diligent student that I was, I’d scratched out notes until my hand ached, circling the parts I’d need to figure out later, which was most of what I wrote down. The nurse talked quickly as she flipped through the slides. I turned to a fresh page in my notebook and began writing a list of to-dos. Contact patient coordinator one month prior to date of egg freezing cycle to confirm medication protocol and cycle schedule. Do online injection training. Get red sharps container from pharmacy and take needles to doc’s office. Think about disposition of eggs re: custody in event of death—donate for research or discard or…? I remember feeling flustered as I sat in the dim conference room that morning, scribbling names of drugs and medication protocols that might as well have been in Latin. In the months that followed, some of my confusion would abate as I learned more about egg freezing’s science. But my apprehension would only grow. I’d felt uneasy at the egg freezing orientation because much of it felt foreign. Now, reviewing these notes, the uneasiness was because it felt much more real—because of my trying to decide about whether or not to freeze my eggs, but also because of Ben.
Skip Notes
*1 Houston IVF was rebranded in 2018 and is now CCRM Houston.
*2 While the urine of any postmenopausal women would work, nuns provided Serono with an extra advantage: Because hormones from pregnant women would contaminate the batch, it was critical there be no chance any of the women were pregnant. Working with nuns improved the odds.
*3 The ovary cells of this type of rodent are commonly used in biological and medical research and are a cell line of choice for scientists because they produce proteins that are similar to those produced in humans.
*4 For a helpful resource on all fertility treatment medications, see resolve.org/learn/what-are-my-options/medications/types-of-medications/.
*5 In addition to young age and high egg count, other OHSS risk factors include having low BMI, having high AMH, and having a very high estrogen level during treatment.
*6 While it’s true that most fertility doctors act in the best interest of their patients, it’s also true that some are incentivized to give patients more intense hormone regimes in order to harvest as many eggs from them as possible, which can lead to spikes in OHSS.
*7 Yet, the Lupron label warns of birth defects in rodents and advises against using the drug when one is considering pregnancy.
*8 A list on the FDA’s website, noting Lupron’s potential serious risks, says the agency is “evaluating the need for regulatory action.”
*9 Many egg freezers I interviewed had done three or four cycles.
*10 When I went looking for hard data on the number of egg donors in the United States, the closest statistic I could find was the number of IVF cycles that used frozen donor eggs, which increased to 22,563 in 2020 from 7,733 in 2011.
*11 Also, though, while there’s no single cause of, for example, gynecologic cancers, there are many risk factors that could contribute to their development—such as the use of fertility drugs, especially if used repeatedly over the course of multiple egg retrievals.
*12 They asked to remain anonymous out of concern of pushback from their boss and colleagues in the field.
*13 Sometimes fertility doctors don’t even hedge with the word “known.” A 2023 episode on the podcast This Is Uncomfortable featured a twenty-one-year-old egg donor who, speaking about the clinic’s doctors and nurses reassuring her about the procedure, said, “I specifically remember them saying, ‘No study has shown that there are any negative side effects from egg donation.’ ” Shortly after her egg retrieval, she was hospitalized with OHSS.
11 Scar Tissue
Marrying Eggs to Sperm
By this point, I had arrived at the darker side of egg freezing. The deeper I went, the more questions I had about some of my unsettling discoveries. At the same time, I was much clearer on the process of vitrification, egg freezing success rates, and financing the procedure (I understood the avenues to paying, at least, even if I had no idea how I would afford to do it myself). I knew, too, that for all of the horror stories like Lauren’s and Lesley’s, egg freezing goes perfectly right most of the time. Now I was ready to turn to another facet of fertility preservation: the healthy debate over egg versus embryo freezing. Anyone considering freezing reproductive cells should consider the trade-offs between the two.
Egg freezing entails cryopreserving eggs for future fertilization. Embryo freezing is cryopreserving eggs that have been fertilized with sperm. To create an embryo, an embryologist fertilizes one or more of a woman’s harvested eggs with the sperm of a partner or donor, then observes the embryos as they develop (remember attrition rates?) in a petri dish over several days. Then, using vitrification technology we discussed earlier, the embryologist freezes the embryos. Mature, chromosomally normal eggs help to make good embryos (the quality of the sperm, of course, matters, too), which is why the younger a woman is when she freezes eggs, the more likely she is to freeze healthy eggs. Clinicians can tell if eggs are mature when they freeze them, but they can’t know if the eggs are genetically normal—that is, viable—until they thaw and fertilize the eggs, then test the resulting embryos.
It’s not currently possible to tell whether eggs are good quality at the time of freezing. This is egg freezing’s biggest weakness. Eggs, you’ll remember, are trickier to thaw than embryos. An egg is a single cell, whereas a developing embryo contains more than one hundred cells, each of which is less vulnerable to damage. Frozen eggs are less sturdy than frozen embryos; more than 95 percent of embryos typically survive the thawing process, compared to 80 to 90 percent of eggs.[*1] So, a major advantage of freezing embryos over eggs is that embryos that develop successfully can be biopsied and tested for the presence and correct number of chromosomes—forty-six—giving the person or couple more information about each embryo’s likelihood of leading to a successful pregnancy and a healthy child. Embryos can also be screened for a specific gene, which is especially helpful if one or both of the people providing the eggs and the sperm are known to have a certain gene mutation or be a carrier of a genetic disorder. (More on genetic testing in chapter 15.) In short: A benefit of freezing embryos is that you have a better idea of what you have in the freezer.
A downside of freezing embryos is that it costs a few thousand dollars more than egg freezing; on top of that, preimplantation genetic testing is another $4,000 to $6,000 or so, depending in part on the number of embryos tested. Another con is the possibility of creating excess embryos that the couple may never need in the future, after they’ve attained their ideal family size. This can pose a practical dilemma—the ongoing cost to store them, hundreds of dollars per year—as well as an ethical and more personal one: Many couples who have leftover frozen embryos after they’re done having children struggle with whether to discard them, donate them, or pay to keep them on ice even if they never plan to use them.[*2] Still, the fact that frozen embryos are sturdier than frozen eggs and can be genetically tested have contributed to embryo freezing becoming an increasingly popular option: Between 2015 and 2020, procedures to freeze embryos rose nearly 60 percent.
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Ben remained supportive of whatever I decided to do about egg freezing. His encouragement and steadiness when it came to my work as well as my more personal endeavors had been a dependable constant of our relationship. But it was still surprising when one evening he walked into my quasi-office in the kitchen, his frame filling the doorway and a twinkle in his eye, and said, half-jokingly, “So, are you saying you would like some of my sperm? Wanna make a zygote?” He had overheard some of the phone conversations I’d been having as part of my research, like with Mandy, when during one of our long phone calls I had pressed her about her decision to freeze embryos with her husband, an option she learned about after she’d said yes to egg freezing. I laughed—what is it with men and their feeling macho about their sperm readying for a mission?—and unfolded my body from its hunched-over, deep-in-work-mode position to go hug him. He wrapped his arms around me and I relaxed into our familiar, comforting embrace, smiling into his chest.
Though Ben had been half-joking in that moment, I thought about the proposition more seriously in the context of my egg freezing plans. Marrying my eggs to Ben’s sperm would be a big biological and legal commitment. I learned that some women do half-and-half: fertilize some of the retrieved eggs to make embryos, but leave the rest, resulting in both eggs and embryos on ice.[*3] If I froze my eggs, I could theoretically mix half of them with Ben’s sperm to make embryos—our future children—and leave the other half unfertilized, just in case. The rest of that sentence that I didn’t want to say out loud was: in case we break up. If Ben and I froze embryos and broke up, our embryos would belong to both of us. But my eggs would still be just mine.
It was time to make another list: Pros of freezing just eggs:
Retain sole control and optionality over whose sperm to fertilize with
Fewer issues surrounding ownership
Fewer up-front costs
In short: fertility preservation autonomy Pros of freezing embryos:
