Do Only 1% of Egg Donors Get Ovarian Hyperstimulation Syndrome? (Spoiler: No.)

Four years ago, We Are Egg Donors was founded by three egg donors. Today, we have an international community comprised of more than 1,000 egg donors -- and we know more today than we knew four years ago. We invited Ari Laurel, an egg donor and writer based out of Oakland, California, to share some reflections.

Enter Ari...

There’s a persistent thing that egg donors are told. New applicants are routinely told that only 1% of donors experience Ovarian Hyperstimulation Syndrome (OHSS), a quoted the statistic from the American Society of Reproductive Medicine.

But on WAED’s private Facebook group, fellow donors routinely read posts from others experiencing overstimulation, from mild cases to very serious ones that require hospitalization. Severe OHSS symptoms range from bloating, nausea, vomiting, abdominal distention, and even fluid retention, which puts pressure on major organs, potentially leading to a stroke or difficulty breathing. When considering the cost of egg donation, donors and recipients alike might consider this a high-stakes gamble for a procedure that has only a 30-40% success rate.

While most of these women do recover, there’s no way to tell how unnaturally overstimulating ovaries to produce more eggs will affect donors in the long run.

“Many agencies and clinics emphasize how safe egg donation is -- that the risks are ‘less than 1%’ -- but there is really no evidence to support that claim because there has been virtually no research on egg donors’ short-term or long-term health outcomes,” says medical anthropologist, Dr. Diane Tober, from the University of California, San Francisco, who has been conducting research with egg donors since 2013. To date, she has interviewed over 90 current and former egg donors, and collected 180 online surveys. Her initial findings indicate that far more than 1% of egg donors experience complications--some quite serious.

Dr. Tober states:  “So far, in my research, mild to moderate OHSS is quite common, and many donors reported having been hospitalized due to severe OHSS--which can be life-threatening if left untreated. Some 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. But it is impossible to know if these are directly linked to their egg donations or if they would have had these conditions anyway. The best an agency or clinic could say to their prospective donors is, ‘We don’t know what the immediate and long-term risks are, or how frequently they occur, due to a lack of research.’”

As a donor, I knew the risks and had done my research, but I couldn’t help but notice the way the agency and clinic downplayed the risks when I spoke to them about it. The woman at my agency told me that egg donation is “extremely safe,” a phrase that made it difficult to tell whether it came from a study or from personal opinion. When I expressed my concerns, she told me about her multiple donations, which didn’t seem to be an attempt to provide additional medical information, but to provide me with sisterly reassurance that I should just relax and that everything would be fine.

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There’s a bit of a power dynamic at play with an egg donation. You’re not a straightforward patient because the Intended Parents are the ones footing the bill. It can create a conflict of interest when it comes to medical treatment. When providing fertility drug doses, doctors are under pressure to balance the donor’s health as well as the expectations of the IPs. While I don’t know if my experience was the result of this conflict, I can imagine it being the reason behind why some fertility doctors prefer to keep the process of donation an impersonal one. Throughout the three months of my donation, any medical needs -- ultrasounds, drugs, instructions -- were all given to me by nurses and techs at the fertility center. I didn’t meet my doctor until the day of my egg retrieval surgery.

I was already undressed and in my robe with the IV drip in my arm when he walked in the room.

I had no makeup on. I had stowed away my glasses, and put on my hair net. All my most distinguishing features had been removed. I must have looked like any other patient to him, and to me, the doctor looked like a set of fuzzy blobs. Three years later, I wouldn’t be able to pick him out in a lineup, and I can’t remember his name.

I have a very good friend whose father worked in IVF and fertility. Growing up, she had a tumultuous relationship with her father, who is abusive and cruel. When she moved out of her childhood home as an adult, she found damning information: a sexual harassment complaint filed against her father at his work. My intention is not to paint all fertility doctors as abusive and cruel people who take advantage of their colleagues or patients. My point is that women are victimized every day in many different contexts. My point is it’s mind blowing for me to trust my unconscious body to a person I have never met, for a health problem that I don’t have. It’s risky to not at least have some rapport with my doctor. After all, patients are vulnerable, and egg donors, perhaps some of the most vulnerable.

When I came to, post-retrieval, the doctor came in to tell me my numbers. It was the second time I’d met him. He seemed like a nice man, but what could I know? I’d spoken to him for all of five minutes, and now I’d just woken up from being anesthetized, groggy and slightly disoriented. The doctor touched my arm and told me I made “a couple people very happy today.”

Through research and medical questions, I learned that the healthy number of eggs retrieved was 10-15. I donated 12, which was right in the middle of that number. After reading stories of people who had experienced bloating and pain, the number 12 filled me with relief. I couldn’t wait to move again, to exercise, to run around and feel free in my body.

What’s more, I felt optimistic about my long-term health. I had a fast and painless recovery, and was happy to learn later on that the parents had a viable pregnancy through my donation. My speedy recovery was just as well -- the health insurance paid for by the intended parents did not cover me beyond 30 days after the procedure, and it’s important to note that I was not scheduled a followup appointment. Instead, I was flown back to my hometown, and instructed to call or email the fertility center if I experienced any symptoms of OHSS.

I found out later that the number 12 did not soothe the agency I’d worked through, as it did me. When inquiring about donating a second time, I was told that the numbers from my last donation were “low.”

A second couple looking at my profile expressed “concern” about the amount of eggs I was able to donate, and that I would need to do another full evaluation to make sure I was the right donor for them. What was there to complain about, I wondered? My recovery was optimal. Three years later, I was in excellent health. The parents gave birth to a healthy baby girl. I still think of the child every Mother’s Day, which marks around the time she was born. She would be two years old now. My last donation was objectively a success. But it wasn’t enough for my agency. You would have thought they were evaluating a sturgeon for a kilo of premium caviar.

Even with that 1% statistic, I can’t help but feel in the dark. For one, because of my suspicion of the number, but also because it’s an answer that doesn’t satisfy so many other questions.

I have so many questions. Many of us do.

Why are donors encouraged to achieve certain numbers?

At what number of eggs retrieved will donors begin to experience complications from hyperstimulation?

Why are egg donation retrievals routinely above the determined safe estimate of 10-15 eggs?

What determines the dosages of fertility drugs given to donors?

Why are donors often encouraged to do several donations back-to-back?

Why can’t my doctor speak to me about this?

These conflicts of interest are glaring and they cast aside egg donor’s health. As our community grows, we will continue to advocate for more transparency and consistent standards of care for egg donors. We will continue to advocate for long-term research on donor health.
 

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Ari Laurel is a writer and editor from Oakland, CA whose work deals with Asian American icons, and youth identity in the ever-shifting Bay Area. In addition to her feature in the 2015 Kearny Street Workshop APAture Festival, she was a 2012 finalist for the PEN/USA Emerging Writers Fellowship, recipient of University of Montana’s Candace K. Brown Memorial Scholarship, and her work has appeared in Passages North, The Conium Review, the Kartika Review, Bitch Media, The Toast, Yellow Chair, Quartz, Duende, and Hyphen. You can also read her original personal essay, published shortly after her first and only egg donation, right here.

Story Credits: Words by Ari Laurel, Editing by Raquel Cool, Photograph by Larm Rmah