W

hen Catherine Fonseca volunteered as an egg donor, the intake form asked for her SAT scores.

It did not ask if she understood the long-term health implications of stimulating her ovaries to produce a bumper crop of eggs to be extracted and turned over to an infertile couple.

That wasn’t an oversight by the clinic. No one knows the long-term risks to egg donors — if, in fact, there are any. Anecdotally, some women — Fonseca among them — said they experienced an array of health problems after donations, including ovarian cysts and endometriosis, a painful inflammatory disease that can cause infertility.

But there has been little research on the long-term outcomes for egg donors, who are often recruited on college campuses with the promise of tens of thousands in payments if they have particularly desirable characteristics, such as green eyes or high-level tennis skills or Ivy League degrees.

“The bottom line is that we simply don’t know anything for sure, because nobody has followed these women systematically,” said Linda Kahn, a postdoctoral fellow at New York University School of Medicine.

The Centers for Disease Control and Prevention last year began requiring fertility clinics to report a wealth of information about egg donors, including their age, height, weight, ethnicity, and history of previous donations.

The CDC already collected data on short-term complications from egg donation. The expanded data set will give officials far more insight into those issues, including the first data on whether donating eggs multiple times puts a woman at increased risk of ovarian hyperstimulation syndrome, which can cause painful symptoms and in rare cases can be fatal.

But it still won’t address long-term risks.

Most of the research conducted on egg stimulation and extraction has focused on women undergoing in vitro fertilization, or IVF. It’s the same procedure as an egg donation. But the populations are different. Most women undergo IVF because they are infertile. Often, that infertility is a symptom of other health problems.

Donors, by contrast, are chosen precisely because they don’t have such health problems.

“I think it’s fair to say that they’re not the same population,” said Dr. Richard J. Paulson, president of the American Society for Reproductive Medicine and a specialist at the University of Southern California’s Keck School of Medicine. “I think that it is a valid point that we do not have very good long-term follow-up,” he said.

The one study on egg donors is a 2005 survey of 80 women who had donated eggs as long as two decades earlier. Thirteen of them said they were still experiencing physical effects that they attributed to the donation — things like ovarian cysts, fibroids, and infertility issues that arose later in life. But it was a small and unscientific sample, with no medical records to back up the women’s claims.

The dearth of solid data frustrates and enrages Dr. Wendy Chavkin, a professor of public health and obstetrics and gynecology at the Columbia University Mailman School of Public Health and cofounder of Global Doctors for Choice, a reproductive health advocacy group.

“To be going out there and using these procedures in a widespread manner violates every aspect of public health policy. ”

Dr. Wendy Chavkin

Egg donation nearly doubled from 2000 to 2010, when there were more than 18,000 donor cycles in the US, according to a study published in the Journal of the American Medical Association. The CDC reported that the number of donor cycles was 20,481 in 2014, the most recent year for which data is available. Experts predict the number will continue to rise as more women decide later in life to have children.

Chavkin argues that it’s not responsible to do so many procedures without more data.

“To be going out there and using these procedures in a widespread manner violates every aspect of public health policy. You’re supposed to have proof of efficacy, ethicality, proof of no other route,” she said. “Maybe donating is great, and a big boon, and consequences are minimal. But we don’t know.”

Egg Donation

A swollen abdomen and a pounding heart

It was a cold February morning in 2014 when Catherine Fonseca walked into Reproductive Medicine Associates of New Jersey. She was there for the final step of egg donation — the egg retrieval process. For weeks, Fonseca had been injecting herself with hormones to nudge her ovaries to produce more eggs. By day 10 of pricking her stomach with a hormone-laden needle, her abdomen had swollen so large that she couldn’t fit into her pants.

Most donors produce somewhere between 10 and 25 eggs, which are then sucked out of their fallopian tube with a hollow needle inserted through the vagina. Fonseca’s ovaries had produced no less than 59 eggs.

Every one of those eggs would become the property of the Portuguese couple who chose Fonseca as their donor for her lustrous dark hair, big, bright brown eyes and elegant, expressive brows — all features common in Portuguese ancestry.

Many women donate eggs for the money; compensation is commonly around $5,000 to $10,000, though it can range higher for those with the most desirable traits. Fonseca, who’s now 26, was motivated in part by altruism. She liked the idea of helping a couple conceive; she was in nursing school at the time of her donation, and also on the bone marrow registry.

Still, by the time she went to the clinic on that morning, she was ready for the swelling and injections to be over.

As it turned out, she still had a long road ahead. The nurse gave her Tylenol with codeine after the egg retrieval and sent her home, but a few hours later she was in the emergency room. Her waist, normally 28 inches, now measured 41. Typical ovaries are about the size of walnuts. Hers had swelled to the size of grapefruits, displacing her other organs.

Typical ovaries are about the size of walnuts. Hers had swelled to the size of grapefruits, displacing her other organs.

The hormones made her estrogen levels skyrocket, and in turn her capillaries were leaking into her abdomen. All of this made her blood thicken, putting her at a high risk for clots and pushing her heart into overdrive.

Fonseca was experiencing ovarian hyperstimulation syndrome, or OHSS. For every 100 women who inject hormones to stimulate their ovaries, one or two are likely to experience it. Sometimes, it requires a simple draining procedure. Rarely, women die from it.

For Fonseca, it took six months before she started to feel normal again, but she said after the OHSS, she started experiencing other medical issues that weren’t previously a problem: ovarian cysts, cervical tumors, 25 pounds of extra weight. Most recently, she was diagnosed with endometriosis.

Fonseca and other egg donors are warned that hyperstimulation is a short-term risk. They’re also typically told about immediate psychological effects of donating genetic material, which the American Society for Reproductive Medicine describes as “complex.” Those cautions are spelled out in the informed consent documents that donors sign.

But there’s no information in those documents on potential long-term risks, because research is so sparse.

A 2011 study that followed 25,000 Dutch women for 15 years found that infertile women who went through IVF were four times as likely to get ovarian cancer much later in life than infertile women who didn’t have the procedure, though the likelihood is still very low.

But infertility already predisposes women to a number of health risks, said Chavkin. She said that data from IVF studies can’t be used to draw conclusions about all egg donor risks. “There’s only the one piece in common [between the groups], which is the original stimulation and the retrieval. After that, once the embryo is implanted, the IVF recipient is going to go under a number of other hormonal changes, including pregnancy,” she said.

There simply isn’t any long-term health information to give egg donors, Kahn said: “They’re signing an informed consent, but how informed can your consent be if we don’t have the information?”

She and Chavkin say there’s no incentive for anyone to study the health risks to egg donors because the system as it now stands 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.

“A for-profit business has found a willing group of consumers and sellers and run with it,” Chavkin said.

Added Kahn: “There is no eagerness to find anything wrong.”

“The biggest thing egg donation did was scare me. I felt used.”

Catherine Fonseca

Fertility experts say that research hasn’t happened because of the way egg donors were originally perceived when IVF started over 30 years ago. Most of the focus was on the infertile couple seeking to conceive.

“The egg donor was sort of in the background,” said Paulson, of the American Society for Reproductive Medicine.

“Donors aren’t really patients in the normal sense of the word,” said Dr. Jim Toner, an Atlanta-based endocrinologist and clinical director of SART. “So [the CDC] did not build out a system that allowed reporting of the donor’s cycle itself.”

Egg Donation

A repeat donor finds herself infertile

Janneke Parrish, 25, has donated eggs three times.

Or at least, she’s tried to.

Her first two donations went well. She received $4,500 in payment the first time. The second time, she only accepted coverage of her medical costs because she donated in the UK, which doesn’t allow women to receive compensation outside of medical costs.

The third time, she was in the midst of the preparatory blood tests when she got a shock. “They called and told me my hormone levels were lower than the woman interested in receiving my eggs,” she recalled. She was infertile.

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Parrish doesn’t blame her early menopause on her two donation cycles. But she admits that it’s odd — her mother got pregnant at 38 and there are no instances of infertility in her family. “On one hand, I never intended to have children, but I didn’t want biology to force that on me,” she said.

Now a data analyst at Apple, Parrish doesn’t regret donating her eggs. She still remembers the ad that prompted her to first consider it, when she was an undergrad majoring in philosophy and religious studies. The couple was looking for someone who was 5’7”, with brown hair and brown eyes. “That was me,” said Parrish. “Because the woman looked like me, I put myself in her position. There was no reason I couldn’t do it, so I thought I would change someone else’s life.”

Parrish said she would donate again if she could, but she does want more research on the risks for egg donors.

“I think there should be more research on the long-term effects, but I also understand the difficulty in doing so, given both the anonymity and the fact that this is fairly recent, technology-wise,” she said. “It’s difficult to make an informed decision when there’s no knowledge of what potential consequences could be.”

“It’s difficult to make an informed decision when there’s no knowledge of what potential consequences could be.”

Janneke Parrish

Both Parrish and Fonseca said they’ve relied on advocacy groups like We Are Egg Donors to connect with other women who have been through the procedure.

It was on the group’s message boards that Fonseca finally found some comfort. The most lasting trauma, said Fonseca, has been the psychological strain — another area where research is scarce. “The biggest thing egg donation did was scare me,” she said, her voice weighty with emotion. “I felt used.”

Fonseca has not been able to find out whether the couple who got her 59 eggs was able to conceive a child. She agreed not to contact the couple when she went through the procedure. But she can’t help but wonder about the fate of the eggs that cost her so much.

“I just want to know,” she said, “if it was worth it.”

Correction: A previous version of this story incorrectly spelled Catherine Fonseca’s last name.

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  • you know it’s all fun and games but really
    how are you supposed to have an anonymous egg donation process that protects all of the egg donors when egg donors themselves act like they didn’t want to give their egg cells.
    i am sorry but it’s just stupid
    I am really grateful for all that my egg donor has done to me, she gave a part of herself to help me conceive and now I hope that she is doing well
    I am sure my clinic managed everything and thus I do not have to worry about it anymore.
    I would be so glad if my baby grows great and happy and even if he looks like his bio mother that is fine by me but I just do not want to continue with this egg donation story and if the donor signs the contract she should know that the IPs could never even think about her at all in the future
    that’s why i feel like biotexcom clinic has made everything better by just stating in the contract that we cannot meet the egg donor and we cannot even know her real name
    to be quite honest that’s a relief.

  • Nancy, In response to your comment about vitrification for fertility preservation, I do think–potentially–it could decrease the demand for egg donors. But at what cost? Having spent years interviewing women about their experiences with infertility, I do think it is possibly better for a woman to take the risks of the drugs and procedures upon herself for her own use, than to pass that risk on to someone else–a younger, more fertile version of themselves. I think there are too many unknowns, though, for this to advertised as a “reproductive insurance policy” that’s going to level the playing field between men and women. I think a lot of that advertising is playing on women’s fears in service to the growing industry.

    In regard to broader issues surrounding the potential risks, the fact that there still has been no longitudinal research on the impact of ovulation induction and oocyte retrieval on women’s health is truly troubling. So far, out of the almost 100 donors I’ve interviewed, I have three young women with strange, rare, reproductive cancers–including one woman who has stage 4 estrogen-linked cancer, and had to have a hysterectomy at 30. I have another donor who had an extremely rare form of cervical cancer–at 25–with no family history and no sign of HPV. Her doctor told her she needs a hysterectomy as well. We cannot tell for certain whether egg donation caused these women’s cancers, but the anecdotal evidence I’ve collected is enough to attest to the urgency of long-term epidemiological research, and a call for a registry so that women can be tracked over time. How can women have informed consent where there’s no data?

    In addition to those few cases, the number of women in my sample who have experienced moderate to severe OHSS is much higher than currently reported in the medical literature. Also, when egg donors report to the clinics where their retrievals were done, while some clinics respond appropriately and take care of the woman and her symptoms, other clinics brush off their complaints, tell them that “bloating is normal,” and that it will go away in a few days. One of the donors I interviewed ended up in the hospital with a collapsed lung because her agency and clinic did not take her complaints seriously. She was suffering for over a week in bed before she finally went to the ER. Also, OHSS rates among donors are not a) being called OHSS, usually referred to as “bloating”, and b) not being reported to the CDC. The little data that we do have from the CDC relies on clinics to self-report complications, and they’re not doing it. So that data that points to the claims of “low risk” is unreliable.

    Another problem is the “more is better” mentality when it comes to eggs seriously jeopardizes women’s health. For infertility treatment an intended parent only needs a few good eggs to create embryos–they don’t need 30 or more. What happens to all those extra eggs? The US donors I’ve interviewed are consistently producing higher numbers than their UK and Australian counterparts, who are typically stimulated to produce fewer than 20. Some physicians use aggressive hormone dosage protocols to get more eggs, at greater risk to the donor.

    Most intended parents who use egg donors have absolutely no idea the degree to which young women are putting themselves at risk because (a) they’re economically vulnerable, and (b) they believe in helping other people create their families. What they don’t realize is that there are many donors out there who were unable to conceive after egg donation. Did egg donation cause their infertility? Again, we don’t know if there’s a link due to the lack of research.

    There needs to be a limit on the number of eggs per cycle a woman can be stimulated to produce, a registry, and research to track donor health over time, as well as accountability for those physicians who have high OHSS rates and other complications among their donors. As it stands now, a donor who is harmed has no recourse, and some have racked up medical bills far beyond the thousands of dollars they were paid.

  • For Catherine,

    I am so glad you have recovered.

    No one should have ever dismissed your your medical symptoms and your request(s) for help. That is inexcusable of the clinic.

    For whatever it’s worth: Our story is long, through the technicalities. Suffice it to say resultant of unknown genetic issues, rather than fertility. It started with losing a five year-old to liver cancer.

    Today, 85% of marriages don’t survive loss of a young child was the statistic provided to me from a counselor. The loss also impacted a slightly older sibling.

    While the process of egg donation isn’t perfect. It is sometimes important.

    Two days ago, twins were born to our family; in no small irony, on the lost child’s birthday. Everyone is healthy.

  • This is just like prostitution–the consumer pays for the right to use a woman’s body and not care what happens to it afterwards. I don’t care that the consumer is not some creepy john, but rather some nice couple from Nebraska. It is still the very same thing . . . the money can’t wash your hands of what you are doing!

    • To follow your logic, “(egg donation) is just like prostitution.”

      Just what do you propose telling that “some nice couple from Nebraska”?
      Well, you are ______________ (insert infertile, have cancer, etc.). Too bad, so sad, get a divorce, move to state allowing plural marriages!

      While egg donation and surrogacy are not ideal. It’s the best we’ve got right now.

      Unless you can suggest a better idea – Your comment is merely a rant.

    • Her comment was not a rant. There are other options. You could always adopt. Putting somebody else’s life at risk just so you can push your “own” baby out just isn’t right.

  • Readers: This scope of this article is fairly large. I do not contest what is written here. Yet, the tone of this article appears to be painting near worst-case scenarios for overly dramatic effect.

    In particular, Catherine’s OHSS would likely have been treated earlier, had she been more observant of developing symptoms and communicative with the IVF clinic.

    My wife also began to experience OHSS related to a second egg retrieval process. The IVF clinic appropriately warned and educated us with what symptoms to be on the lookout for. When my wife did suddenly feel unwell; we compared what she was experiencing to the materials we were provided as similar. She then contacted the clinic, was examined that day, and treatment began immediately.

    In short, the symptoms of OHSS were mitigated and it was only a mild nuisance.

    With all argumentative essays, just beware of the author’s bias.

    • I contact my IVF clinic when I donated and had aggressive signs of OHSS. They did not return my calls for 4-5 days. By the time they contacted me the symptoms hade subsided. They made me feel stupid for reaching out. Once they had my eggs I was a total inconvenience to them. Something terrible could have happened to me that could have effected my fertility for the rest of my life. They were completely unsympathetic. But thanks for the mansplaining about “author bias”, Rob.

    • Dear Cici,

      Stick the “Mansplaining” comment!

      In no way, shape, or form did I discount anyone for their sexually, unlike what you just did.

    • In response to your comment, as Catherine, the donor. I was very well aware of the symptoms to be on the lookout for. I started to experience symptoms prior to the retrieval. I was brushed off the first time I called with the complaint of severe bloating and weight gain of 3 pounds in one day. The next day I had to call again to complain that the swelling was worse. After that, I was in the clinic every morning getting blood tests and ultrasounds to monitor my status. After day 4, I was told my estrogen levels were too high and I was to take the trigger shot the following day. As soon as I woke up from the retrieval, I knew something was wrong. I was given pills and were told, “they will reverse the hormones in your body.” Within a few hours I was unconscious and being rushed to the hospital.

  • Great article. I have been conducting research with egg donors for the past three years. Anyone interested in participating in the research can find more information at http://eggdonorresearch.org or contact us at eggdonorresearch@ucsf.edu

    And to Nancy Hass, below, vitrification success rates, so far, are not great. For women who use their frozen eggs (most don’t) it works less than 30% of the time. Also, some egg donors I’ve interviewed who have only done one or two cycles do have complications and some do not. But it does appear that the more cycles one goes through, the greater the risk for complications.

    • Diane,
      It’s my understanding (I’m not a scientist, just a science journalist) that if women freeze their eggs by age 35, the current rates of live birth is now the same as frozen embryos. That is per the studies of Jamie Grifo at NYU. It’s still early in the result cycle — it’s only in these last two years that a large enough cohort of women have been using the previously frozen eggs, and a significant % of those procedures were done 10 or more years ago, when the protocol was slow-freezing, v vitrification, and those eggs have a much lower chance of resulting in live birth. Still, my overall point is that using donor eggs with the higher meds that are employed will inevitably wane significantly once it is commonplace for women to freeze their own eggs. Of course you may discover in your very valuable research problems with even lower-med stimmed egg freezing, but baring really scary results, most women, I would wager, will still opt for the the procedure if they can afford it. As doctors improve the freezing methods, live births will also rise. I am happy that you are pursuing this as it will give women a clearer picture of the overall risk/reward ratio

  • This piece is rather late, as in about 10 years late. Egg donation will be an increasingly rare procedure now that egg vitrification is on the rise. Very few women will need donor eggs once it is routine to freeze your eggs by age 30 if you don’t already have children. Ironically, however, such studies as are recommended here would be valid on the population of young women now freezing their eggs, as the procedure is identical (stim, drugs etc). And unlike the older women doing IVF with their own eggs, the population is virtually identical. I suspect you will not find statistically significant long term effects for women who have done one or two cycles, but it would be nice to know.

    • Vitrification is not necessarily the answer because success rates are low once women decide to use their eggs–less than 30% in most clinics. Plus, women who undergo these drugs and procedures to freeze their own eggs face the same potential risks as women who provide eggs to others. Although, I am finding that egg donors are often being stimulated to produce much higher quantities of eggs than women are for their own use. Even egg donors who go through only one or two cycles can have complications.

      I’ve been conducting research on egg donors for the past three years. If anyone is interested in finding out more I can be reached at eggdonorresearch@ucsf.edu or on my website http://eggdonorresearch.org

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