Not all rainbows and butterflies
Support groups are meant to provide support. But sometimes you learn too much.
Ten years ago, if you were a woman who had donated eggs, there was a good chance you'd never met or spoken with anyone else who had done it. Sure, it felt exotic, but it could also feel isolating.
In the years after she donated eggs at a Toronto clinic in 2004, Claire Burns began to feel a need to connect with other egg donors. She contacted an infertility support group and suggested they start a chapter for egg donors. "Why would you need a support group?" she remembers being asked.
Why? Because there were a lot of thoughts and feelings to untangle, and ordinary people didn't always get it. In our first phone conversation, Burns told me she had been led to believe that she was just giving away something meaningless — like a piece of skin — but that now she was re-examining that. "It's my biological material. I am part of that family, even though I have to pretend I'm not," she said. "It's something I once thought I'd be able to dismiss. But it's haunting me." She wrote and produced a play, Hatched, about egg donation, and described it as therapy.
During our early interviews, in 2010 and 2011, Burns asked me why I didn't set up a network of egg donors. I asked her why she didn't. Not long after, she met Raquel Cool, a woman from California who'd donated, and Sierra Falter (now Poulson), who'd donated three times in Kansas. The rest is history.
In 2013, the three women together founded We Are Egg Donors (WAED), an online support group where donors can meet, share stories, and trade information. The group now has members from around the world. Importantly, there is a secret forum where women can share details about things like numbers of eggs actually retrieved, real side effects and egregious clinic behaviour. "Don't be fooled," Burns told a meeting of the Canadian Fertility and Andrology Society in Halifax in 2015, "we are warning each other about substandard practices."
Running an organization like this can take a huge toll, both in time and in emotion. The founders are all in the busiest parts of their lives, establishing careers and families. Still, I was surprised to learn that a few years ago, in 2016, Poulson formally resigned from her leadership role in the group.
In a recent phone conversation, she told me it was starting to affect her mental health. "My biggest issue was medical consent, whether they were giving the full picture of the risks," she told me. "I believe you're dealing with a vulnerable class of women — I was one of them. Some of the practices take advantage of that."
Below I share the letter she wrote to the members of WAED.
I am announcing my departure from WAED. I'm a feminist. I'm pro-choice. I continue to stand strongly for a woman's right to choose what is best for her own body. I also believe in the right to procreate as a fundamental constitutional right. However, I am unable to fulfill my role as a co-founder/leader of WAED when I can't support egg donation as it is currently practiced in the United States. I am proud of the group/blog/movement we've built and know this is only the beginning for WAED. But let me explain why I'm deeply concerned about how the United States treats egg donors.
My perspective on my egg donations quickly changed after a series of events starting in 2013. First, I met Claire & Raquel - the first two donors I had ever spoken to. We had so much to say and spoke with other egg donors off the bat. We were shocked to learn that not everyone's experiences were the "rainbow and butterflies" experience that I had. We found that some people felt betrayed, commercialized, and exploited. We saw — and continue to see — cases of agencies and clinics operating unethically and, sometimes, illegally.
My concerns regarding egg donation only escalated after we began speaking with donor after donor, via Skype or in person. Not to mention, speaking with donor-conceived children made me realize that donor-conceived people may have their own set of identity issues.
These initial months of conversations left me feeling sick to my stomach with fear. And these feelings have only continued to grow with each passing month that the Secret Forum operated. My concerns over my own health grew. The best word I can use is regret. I had great regret over donating my eggs. It wasn't that I felt uncomfortable with donating my eggs per se - I don't regret the children that now exist. It was that I felt the risks had been misrepresented. I felt I had been 'duped.' As we all see through this group, OHSS is occurring far more often than it is ever reported on clinic websites or in-person during consultations. There are egg donors who have experienced hair loss, thyroid and other hormone imbalances, weight gain, sciatica pain, muscle loss, infertility, PCOS, endometriosis, cancers. Most of these donors were turned away and ignored by their clinics when they returned looking for help. Donors who were likely predisposed to PCOS but were never made aware of the extra risks to their health prior to donating and then after donating, when their PCOS symptoms emerged, the clinics refusing to see them and wholly denying any connection between their donation(s) and their current symptoms.
Unfortunately, the forum has largely become a trigger for all the foregoing reasons. Despite our efforts (and my efforts), to inform donors of the risks and the reality that the American fertility industry operates without meaningful regulatory oversight, time and time again, I watch as young women subject themselves to the process, largely trusting in a doctor or facility who does not have their best interests at heart and trusting a system and industry that is preying on the vulnerable (the infertile and young women). Time and time again, members leave retrieval with no follow-up care, only to have liters of fluid removed later from their abdomens. Time and time again, we've seen clinics marginalizing their pain, explaining it away as "normal."
It has been tiring. This has been a huge part of my life, but at this point in time taking a step back is the right choice for me. Raquel is still here for everyone as co-founder, moderator, blog editor, and advocate. Moving forward, I'll be available to assist Raquel in carrying on WAED's mission, however, that role will be in a consultant capacity only. For those who do wish to reach out, you can find me on Facebook and at [email address.]
Email me at firstname.lastname@example.org.
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