“Egg donors want more research, so they can make informed decisions and better advocate for themselves,” says We Are Egg Donors (WAED) co-founder Raquel Cool.

I first met Cool at my Berkeley, California, office in 2013, when WAED just launched. During lunch, she told me how egg donors were coming forward with a range of concerns—such as fear of unknown side effects, being taxed by the IRS, and not having realized how egg donation would affect their lives.

As a medical anthropologist who spent years conducting research on infertility, I knew this was a topic I had to take on. In 2014, I launched a research project about egg donors’ decisions and experiences. I have since interviewed at least 90 women from around the world and collected 160 surveys (some are quoted here using pseudonyms to protect their identities). I am also working on a documentary film, The Perfect Donor. These projects explore the challenging issues surrounding egg donation and include a range of egg donors’ voices.

If you’re thinking about egg donation, here are some things based on my research that I think you should know.

Becoming an Egg Donor or Provider

Most women find out about egg donation through advertisements posted by agencies and clinics, offering large sums of money for “the gift of life,” meaning this is not a donation in the strictest sense of the term. Most women have complicated reasons for becoming egg donors—usually a mix of financial incentive and a desire to help other people have children.

Some donor programs have outreach recruiters who seek out women on college campuses, or at sorority and other events where young women congregate.

Michelle—a blonde-haired, blue-eyed four-time egg donor with perfect makeup and manicured nails—told me how she was recruited by her client at a salon where she worked:

She was in my chair and just casually asked me if I’d ever thought about donating eggs. She said, “You’d be the perfect candidate” …. My parents never wanted me, so it felt really good to be able to do that for someone who really wanted a child.

Becoming an egg donor requires medical screening, filling out questionnaires about family and personal health history, psychological counseling, and sometimes genetic counseling. It is a rigorous legal and medical process.

The Egg Donation Cycle: Nuts and Bolts

An egg donation cycle takes three to four weeks. First, you are put on oral contraceptives to sync your cycle with the intended mother or gestational surrogate. Then, you’ll self-inject fertility medications to stimulate the ovaries to produce more mature oocytes (eggs) than normal. Until recently, many doctors used Lupron (leuprolide acetate) for several weeks at the beginning of the cycle to shut down the ovaries, but few doctors use this protocol anymore because it takes longer and requires more medications. If the doctor you see starts your cycle with Lupron, it may be better to ask for a different and shorter drug protocol that will require less medication. Lupron is also associated with an array of side effects and should be used at a minimum.

When the eggs are mature, you’ll inject a “trigger shot”—usually of Lupron (leuprolide acetate), hCG (human chorionic gonadotropin), or a combination—to release the mature eggs from their follicles. If you produce a large number of eggs, when it comes to the trigger shot, Lupron by itself may be preferable because it reduces the risk of a common complication known as ovarian hyperstimulation syndrome, explained in more detail below.

Forty-eight hours later, the eggs are surgically retrieved with an ultrasound-guided needle that goes through the vaginal wall to suction the eggs out of each ovary. The type of anesthesia used varies from clinic to clinic; some clinics sedate during retrieval, and others use only a local anesthetic.

Each ovary contains many follicles with developing eggs. In a normal cycle, only one egg comes to maturity. Fertility medications enable more oocytes to mature because the injectable medications stimulate follicle production. Some women have naturally higher “resting antral follicle counts” than others, which means they will produce more mature eggs when taking fertility medications than those with a lower count. Higher medication dosages can increase the number of eggs produced. Higher quantities of eggs can also increase a woman’s risk for complications.

I asked Dr. Salli Tazuke, a reproductive endocrinologist at the Palo Alto Medical Foundation, what she thought about donors producing 40 or more eggs in a single cycle. She told me:

I’d be terrified. That result is a direct result of what a physician decides to do …. I aim to get around 10 to 20 mature oocytes in a donor cycle—to get enough so the patient can have a few good embryos but not to put the donor’s health at risk.

A doctor cannot always predict how a woman will respond to the medications. However, different doctors use different medication protocols. Standards of care vary.

Choosing an Agency or Clinic

There are many agencies and clinics with egg donation programs. Agencies are go-betweens for intended parents (IPs), donors, and fertility clinics. Some agencies are known for paying their donors higher compensation than others and specialize in “hard-to-find” donors, like Jewish or Asian women or those with Ivy League educations.

One advantage of going through a clinic, as opposed to an agency, is that if you find one you’re comfortable with, you should have a consistent standard of care. If you go through an agency, you may be sent to different physicians with different standards of care, but the compensation may be higher.

Liana provides an example of medical care on both ends of the spectrum:

The first doctor I went to in San Diego was great. I produced 29 eggs, which he thought was a little high. But when I went to a different doctor in Idaho, it seemed like a back-alley kind of practice. I had a really bad experience, and I had 52 eggs. When I told the doctor in San Diego on my third cycle what happened, he was really concerned. He reduced my medications so I wouldn’t produce so many eggs. That time, I had 15. He said that was a good number, and my recovery was much easier.

Donors need to advocate for themselves. Make sure you find a reputable agency by looking at their reviews and asking other donors, if possible.

Also, don’t fall prey to flattery; this is a business rooted in emotion. But it’s also your body. Ask for and keep copies of all medical records. And if a recruiter or doctor does not address your questions and concerns, go somewhere else that does. Your needs come first.

Negotiating Egg Donor Contracts

Some agencies and clinics require intended parents pay for the donor to have her own attorney, but often the donor and the intended parents share a lawyer. This is not in the donor’s best interest because the attorney could be inclined to draw up a contract that favors the intended parents, leaving the egg donor with a less-than-ideal agreement.

Egg donors should have their own attorneys, paid for by the intended parents. Although a conflict of interest could still exist if someone else is paying the legal expenses, most donors do not have the resources to hire their own attorney. Some donors manage to find their own attorney and negotiate to have the IPs pay for them.

And there are many things to negotiate. Think about what happens before, during, and after donation. Make sure you won’t be charged any fees if you change your mind. Once you start the injectable medications, it may be difficult to back out. Also, when it comes to use of “leftover” eggs or embryos, are you OK with them being donated to other couples, donated to science, or destroyed?

But, often, the biggest things for women to negotiate are compensation and future contact with the child their eggs may produce. Most women are paid between $5,000 and $10,000 per cycle. The highest I’ve heard is $250,000 at an “elite” agency. Some negotiate higher compensation on subsequent cycles, especially if intended parents had a successful pregnancy.

If a child is born, do you want to remain anonymous, or do you want to have your identity released when the child turns 18? Are you open to talking with the intended parents over Skype, email, or the phone? Would you like to have contact or updates about the children born from your eggs?

Sometimes, even if you do negotiate in the contract that you will be a “known donor,” parents may change their minds, and you may not have legal recourse.

Jenna, a self-described “creative intellectual,” did an open donation for people she met in an online forum. The parents had promised to tell the child how he was conceived from an early age. She has had contact with the family from the outset, but the child still doesn’t know his mother used an egg donor. Now 13, he thinks Jenna is a special kind of “aunt.” Jenna was angry his parents still hadn’t told him: “If I had thought this was going to be some ‘dirty little secret,’ I never would have donated my eggs. It’s not right! He has a right to know where he came from!”

For other women, open donations work well. Marilyn has three children of her own and has regular contact with the children born from her eggs 10 years ago. She and her kids go on family vacations to visit the twin girls. Marilyn told me: “This is the best I could hope for. We’re like a big extended family, and our kids—though half siblings—are like cousins.”

The Risk of Medical Complications: What We Know and What We Don’t

Most websites advertising for donors state that the most common complication—ovarian hyperstimulation syndrome (OHSS)—occurs about 1 percent to 6 percent of the time and claim there are no known long-term side effects. Yet there is little research to support these claims, and it could take decades for any long-term health consequences to emerge after egg donation.

Mild OHSS—abdominal bloating and discomfort—is common and usually goes away on its own. Moderate OHSS includes discomfort, swelling, and bloating that persists for up to a week.

Severe OHSS includes severe bloating, rapid weight gain, nausea, and difficulty breathing; it can lead to renal failure and is life-threatening when left untreated. It is thought to occur less than 1 percent of the time, but in the group of egg donors in my study, it appears to be far more common than previously thought. Many had OHSS severe enough to require bed rest for a week or more on at least one cycle, and several women I spoke to were hospitalized to have fluid drained from their abdomens. One of them almost died.

Sari, a petite South Asian model, produced 25 eggs on her first and only egg donation cycle:

When I woke up, I was throwing up. I had the worst headaches I’ve ever had and I was in a lot of pain. I went from 85 pounds to 115 in less than a week. Then I started coughing and I couldn’t breathe, so I called my agency and they told me the bloating would take time to go away—that it was normal. Finally, my boyfriend made me go to the hospital, and they wanted to keep me overnight because I couldn’t breathe. Three days later, they said, “It looks like we’re going to have to drain the fluid,” and when they put the needle in, my right lung collapsed.

Young women, women with a low body mass index, polycystic ovaries, and those who produce high quantities of eggs are at greater risk for OHSS. OHSS can be somewhat managed by using a Lupron trigger shot, but some donors have negative reactions, including skin rashes, hot flashes, and menstrual irregularities even months after their last donation.

OHSS is directly related to egg donation. Ovarian torsion—where a woman’s ovary becomes so enlarged it twists in the body—is another direct complication.

Women in my research also experienced other health problems, including aggressive endometriosis, reproductive cancers within 18 months of their last donation cycles, difficulty conceiving, premature menopause, and benign uterine polyps or ovarian cysts.

It is impossible to know if these are directly linked to their egg donations or if they would have had these conditions anyway. But many of these conditions can be connected to increased estrogen. If you have a history of endometriosis or estrogen-positive cancers in your family history, or have polycystic ovaries, egg donation may exacerbate these conditions.

More research is needed in order to determine to what degree egg donation affects women’s health. My research is starting to follow women over time.

Why So Many Eggs?

Some clinics have “egg sharing” programs, where a donor may be matched to more than one set of intended parents in one cycle. Egg sharing is less expensive for the IPs.

Lucy, an egg donor coordinator, explained:

If we have one donor and on her first cycle she gets three intended parents pregnant, the next IP comes along and says “Wow. Three pregnancies. I want to use that donor”…. And it benefits the donor because then she can raise her fee substantially once she’s a proven donor.

Some clinics freeze and bank excess oocytes and resell them to other IPs. Egg sharing programs rely on donors who naturally produce high quantities of eggs per cycle but may be pushed to produce even more with hormones. This could also hold true for frozen egg bank programs, where the business model is similar to sperm banks. In these practices, higher numbers of eggs could increase profits considerably. Some practices, egg banks included, sell eggs in batches of five or six for about $18,000 or more, but still pay the donor the same rate no matter how many mature eggs she produces.

If you’re producing a lot of eggs, ask the physician to reduce your medication so your own health is not jeopardized, and push for a Lupron trigger shot.

Back-to-Back Cycles for “High Demand” Donors

Some women with specific traits—e.g., blue eyes, high test scores, very attractive, athletic, or with particular ancestry—are considered “high demand.” This means intended parents pick them quickly, and there may even be people waiting in line for them to finish one cycle so they can start another. High-demand donors, like Brianna, report feeling pressured:

I had just signed up with this agency known for being really selective about their donors, so I was happy I was accepted. On my first cycle, they somehow had matched me with two sets of intended parents. I ended up having pretty bad OHSS, so I didn’t want to do it again. But when they told me how the other IPs were waiting for me, and how they wanted to meet me over Skype, I felt like I couldn’t let them down.

Doing back-to-back cycles can put extra stress on the body. It is best to have at least two or more normal menstrual cycles before starting medications for the next egg donation cycle. It will not hurt the intended parent to wait a couple of months while your body recovers.

Your Generosity May Cost You—in Tax Money

In 2015, the IRS determined that compensation from egg donations is taxable income. This places a burden on egg donors—most of whom do this to pay off student loans and other debt—only to find out they have to pay half of what they made on their donations to the IRS. Women who had complications related to their donations sometimes spend more on medical care than they received for their egg donations. 

It is important to ask your agency or clinic coordinator if they will be filing a 1099, as every agency or clinic has different internal policies. If your agency or clinic files 1099s for their donors, it may be possible to negotiate higher compensation to offset the amount you’ll be taxed. Some donors have fought the IRS and won, others have lost, but fighting takes time and the ability to hire an accountant to sort through IRS regulations.

Hindsight

Most of the women in my study felt egg donation was rewarding, both because of the children born and because it helped them financially.

Some women regretted it, either because their perceptions toward egg donation changed as they got older or due to health complications. Kim, a three-time egg-donor, was told she was infertile when she later tried to conceive at 27. “In the end, none of the money I made on the egg donations was worth it. I feel like I gave away my chance to have a baby so someone else could have a baby,” she said.

Other women, like Maria, have positive experiences: “I cried tears of joy when I found out my intended mother conceived. That feeling you get when you find out they’re having a baby—it’s pretty amazing.”

Egg donation can bring joy to other people, but it is not a process to enter into lightly. There are children being created that one day may want to know you. Your perspective may change over time. And it is a medical procedure that includes putting large dosages of hormones into your body that may affect your health or future fertility. Weigh the benefits and the risks before you sign away your eggs on the dotted line.