This article was originally published on Broadly.
What will a young woman do for $8,000 dollars [€7,340]? Eight grand is the going rate on a healthy woman’s eggs, paid to her in a lump sum by fertility clinics. We Are Egg Donors is a website that serves as a repository of stories about the strange hell women put themselves through to receive that lump sum. The stories range from body horror tales that involve “overstimulated ovaries” to anxious frets about the surreal experience of having a child you’ve never met, and a few feel-good yarns about a woman who met her donated egg baby and formed a special bond.
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Ultimately, the site offers women considering going through a rather extreme medical process a little more transparency than most fertility clinics are willing to give. It’s that transparency that’s made We Are Egg Donors (WAED) a nasty thorn in the side of the fertility industry.
For instance, after would-be donor Kari waited two years to be matched with a couple looking to conceive, she backed out after reading about all the health issues current and former donors were experiencing on WAED’s secret forum. “My case manager questioned where all of my fear came from and tried to convince me to change my mind,” Kari said in 2015 an interview posted on WAED. “[My caseworker] then went on to tell me not to believe everything I read online and certainly not to “rely on groups like WAED to make my decision.” Um… WHY THE HELL NOT? This group is filled with real women with real experiences that are willing to share and help other donors. This is exactly the place I need to be getting my information from.”
Kari was hit with a $3,400 [€3,120] dollar bill from the fertility clinic for breaking off the donation commitment, with the help of the WAED community, she was able to find a loophole in her contract and avoid paying the fee.
We Are Egg Donors also offers a unique view into the less than tasteful recruiting tactics of the fertility agencies (who recruit for the clinics). Sonja O’Hara became a regular egg donor after coming across an advertisement for an egg donation agency inBackstage, a trade paper for actors.
“After my first egg donation,” she writes, “I was approached by another agency that offered substantially higher compensation because they specialized in having ‘exceptional girls’. [The clinic recruiter] made me fill out a questionnaire which asked what celebrity I was most often compared to. She proceeded to spend ten minutes discussing whether I looked more like Emma Stone or Amy Adams and then took me out onto Park Avenue to take flattering ‘spontaneous’ photos of me where she coached me into more flattering angles.”
During one egg donation cycle, O’Hara developed ovarian hyperstimulation syndrome, a painful and potentially dangerous condition which can also make a woman look several months pregnant. Anxious, she emailed her clinic, begging them to give her an ultrasound to make sure she was okay.
“That was pretty scary,” O’Hara writes. “There were other little things, like I had a nurse rush me out after my egg retrieval when I was still groggy with an IV still in my arm.”
Leah Campbell posted a story on WAED about how she developed aggressive endometriosis — a condition in which the uterine lining grows outside the uterus — after donating her eggs. She ended up losing the ability to give birth to children of her own. She blames her condition on the egg donation procedure.
It was stories like Leah’s that convinced Kari to not go through with the procedure.”I didn’t feel comfortable risking my health and my fertility,” Kari told WAED.
Raquel Cool, Claire Burns, and Sierra Falter are former donors who launched WAED in February of 2013, to provide a “safe space” for donors to share their stories, and to access unbiased, scientifically-backed information on the procedure.
“There was a lot of finger-wagging and stigma around the subject,” says Cool. “Or the ‘step right up!’ carnival calls of an unregulated fertility industry, who relentlessly seek attractive and healthy women to add to their roster. Absent from the conversation were real egg donors.”
A key aspect of the website is its policy of not accepting money from or endorsements from “any business that profits from donor eggs.”
“We were immediately inundated with offers to partner with the fertility industry, and use our organization as a way to recruit and drive more business,” Cool says. “Protecting the integrity and authenticity of the conversation was more important to us.”
Had Lauren, then 22-year-old college senior, known about the site when she looked into donating her eggs, she may have had less emotional strife.
“I had a friend who donated her eggs basically to put herself through college,” says Lauren, now 25. She donated through the Center for Women’s Reproductive Care which is affiliated with Columbia University Medical Center in the hopes of making some money to finance her post-college life— which looked shaky at the time, since she didn’t have a job lined up.
Lauren visited the center and filled out some paperwork. Soon, she was matched with intended recipients, and she began the process of becoming an egg donor. She was also—like all donors at the Center for Reproductive Care—offered $8,000 [€7,340].
She estimates the whole process took four or five months. She describes those months as “unstable” and “anxiety-producing”.
Lauren took hormonal birth control pills for a month to sync her menstrual cycle with her intended recipient. Once their cycles were synced, Lauren started daily injections of fertility hormones. Some clinics have women self-administer the injections at home. At Columbia, Lauren came in every morning to get the injections from a nurse.
“While I was on the hormones, I was really tired,” Lauren says. “It was actually good that I wasn’t working at the time. I don’t think I would have been able to go to work and function very well.”
Then came “like two weeks” of transvaginal ultrasounds every other day. Finally, it was time for the extraction process, an outpatient surgical procedure, which—for Lauren—went smoothly. Later that day, she picked up her $8,000 [€7,340] on the way out of the clinic.
Lauren stumbled across WAED in February of 2014, over a year after donating her own eggs.
“In my experience, egg donors haven’t had many opportunities to connect and discuss all of their thoughts, feelings, and concerns,” said Lauren. “We are more or less isolated from one another.”
She emailed the website to ask if she could share her experiences. She published an article in November 2015 about being a queer egg donor, and another titled “Seven Things You Should Never Say to an Egg Donor.”
“Writing for the blog helped me process some of my experiences,” Lauren says. “I was dealing with some internal frustration about not knowing what happened to the eggs I donated and disappointment about the experience and the long-term health effects of the donation.”
Egg donation has been an ethically-fraught topic since the procedure of in vitro fertilization debuted in the 1980s. The procedure relies on the collection of genetic material—eggs and sperm—from donors, who are financially compensated.
Aaron Levine is a bioethicist at Georgia Tech’s School of Public Affairs. He recently collaborated on a paper about egg donor recruitment and risk disclosure. When I talked to Aaron, he told me that some people in the medical community are concerned that the amounts of money provided to donors might be coercive, particularly to women who are in a financially precarious position.
“The American Society for Reproductive Medicine puts out guidelines on compensation,” Levine says. “They say compensation under $5,000 is fine. Compensation between $5,000 and $10,000 [€4500-9000] is appropriate, but requires justification, and over $10,000 [€9,000] is not appropriate. In most big cities the compensation is within the $6,000-$8,000 [€5,500-7,300] range. But there is a lot of variation. You see these donor agencies that are jumping way above that. You’ll see $20,000, $30,000, $50,000 ads.”[€18,000, 27,000 or 45,000] Levine adds,
“Providing large sums of money may encourage people to donate when it’s not actually in their best interest. They might not fully understand or be aware of some of the risks.”
There are concerns about conflicts of interest between egg donors and egg recipients, and the procedure’s short- and long-term risks.
“There’s a well-understood set of short-term risks associated with egg donation,” Levine explains. “The most common one is probably ovarian hyperstimulation syndrome (OHS). In its mild form, this is essentially expected. You’re over-stimulating the ovaries to produce these eggs so you get these effects.” Injecting your body with hormones can cause your ovaries to become swollen and painful. Severe cases of OHS can cause fever, vomiting, rapid weight gain, and shortness of breath.
The potential long-term risks are more of an unknown quantity. Some women who donated their eggs and later got cancer blame the procedure. Though, Levine warns, there isn’t enough data on the link between cancer and egg donation to make a causal claim.
Cool tells me that We Are Egg Donors aims to be more than just a forum for egg donors to share their stories. The website is trying to make changes in the world of public health and research, as well. They recently partnered with Generations Ahead(a genetic policy nonprofit), The Health Equity Institute for Research, Practice and Policy at San Francisco State University and URGE (a reproductive rights and gender equity nonprofit) to launch a website with unbiased, evidence-based information for women considering becoming egg donors. We Are Egg Donors is also working with the University of California, San Francisco on a research project to study long-term health effects of egg donation, and compare short- and long-term donor satisfaction.
“Short-term risks are not reported, and long-term risks are understudied,” Cool says. “In general, clinics and agencies do not follow-up with donors or maintain contact with them. We don’t want to point fingers. Rather, we want to work together to begin that research, advance knowledge on the risks associated with donating, and move forward with more transparency.
