A decade ago Pamela Mahoney Tsigdinos couldn’t imagine standing on a New York stage and talking publicly about the most intimate details of her life. Tsigdinos and her husband, Alex, are unable to have children, even after spinning the roulette wheel of modern infertility treatments. But today, Tsigdinos speaks for many women as one of the voices challenging the promises of the billion-dollar fertility industry.
Tsigdinos will share a Tribeca podium later this week with other former patients, doctors, authors, filmmakers and trauma therapists for an open dialogue on the long-taboo issue of failing infertility treatments. For women hidden in the shadows, Tsigdinos and her colleague Miriam Zoll opened a floodgate of dialogue with a recent New York Times opinion piece on “selling the fantasy of fertility.”
In that article, Tsigdinos and Zoll reveal that, “Behind those failed cycles are millions of women and men who have engaged in a debilitating, Sisyphus-like battle with themselves and their infertility, involving daily injections, drugs, hormones, countless blood tests and other procedures.”
Is the Fertility Industry like Big Oil?
Tsigdinos and her colleagues seek more transparency from an industry that has become ubiquitous in everyday life. One writer has compared the fertility industry to Big Oil, and not in flattering terms.
Today’s infertility programs are also different from the rigid protocols of the early IVF programs, which required that a couple (married, male and female, of course) try to get pregnant for a certain period of time, and then be willing to pay for the entire procedure. Now, IVF is about $12,500 plus another five grand for the drugs that accompany a cycle and, according to Tsigdinos, only a handful of states require that insurance cover infertility treatments.
In addition to IVF and intrauterine insemination (IUI), treatments today include a new array of options, including donor eggs and sperm, surrogacy and egg freezing.
“The truth is that [infertility] feels completely alienating from the rest of the world,” says Tsigdinos. “We are programmed to believe that science and treatment are the wonders that will answer all of our questions. Medicine and technology are great, but they do not answer all of our questions.”
Just how many families are impacted by all this? Tsigdinos cites World Health Organization figures that estimate 60 to 80 million couples worldwide are infertile, or approximately eight to 10 percent of the population. And, she says, that close to one in six U.S. couples do not become pregnant, despite a year of trying. As for actual babies born from fertility treatments, Tsigdinos and Zoll note that “the European Society of Human Reproduction and Embryology reports that, on average, of the 1.5 million assisted reproductive cycles performed worldwide, only 350,000 resulted in the birth of a child.”
No wonder that behind all the advertising and marketing of this huge industry are a lot of unhappy couples. But the unhappiness doesn’t just stem from being unable to conceive. Tsigdinos, who turned 50 in June, believes many American women think they cannot be honest with loved ones about their personal pain from unsuccessful infertility treatments, commenting that, “Other people around you want it all to be neat and tidy – and it isn’t.”
Tsigdinos’ is a tall Californian; she said she inherited her father’s optimism and most call her “happy-go-lucky.” But, after years of unsuccessful treatment, the normally resilient Tsigdinos and her husband, Alex decided to stop trying to have a child.
“When you are in your forties, you are in what I call the “gray zone,” a place where you have reached the limits when typical childbearing years are ages 15 to 44,” she said. “We decided when I was 40 to stop treatment. So, between 40 and 44, I didn’t know if there would be some strange, miraculous pregnancy.
“I was always waiting for the other shoe to drop,” she said, “Is this going to be the month?”
Though Alex and Pamela tried various treatments, doctors are unable to explain why nothing worked.
In her forty-third year, Tsigdinos started a blog, Coming2Terms, about infertility, written “anonymously” under her first and middle name, Pamela Jeanne. The response was tremendous; she met many other women in similar situations. The traces of her anguish smoldered and turned into the beginning of a movement, and, eventually, her book “Silent Sorority.”
She compared the experience after unsuccessful infertility treatment to that of the “original Burning Man,” the annual ritual in the southwestern desert when hundreds throw their metaphorical sadness and regrets upon a fire.
Empowering Other Women
Tsigdinos is used to getting letters from other women going through what she has, and now with the publication of the New York Times piece, even more messages are pouring in.
“I recently received an email from a woman who said she felt so completely alone in her experience until she read the book, which gave her peace of mind to know that she wasn’t completely crazy. I’ve heard equally from family members and friends who didn’t know how to talk to their loved ones about this issue and have found that they got a better insight into how to address infertility.”
She often reminds people that topics that seem like happy ones — group conversations about children and grandchildren — often make those with fertility issues uncomfortable, and Tsigdinos wonders, what if the tables were turned and someone was asked the highly personal, “Why do you have so many children?”
“We are socialized to think that children are a lifestyle decision,” she said. “We need to remind others that there are people who do not or cannot have children.”
Tsigdinos proposes, if you know someone going through the fertility process to talk with them gently — What do you need? Do you want to talk? How can I help? Would you prefer to work through this on your own? She says it’s also not a bad idea to steer clear of what she calls urban legends. Well-meaning people always want to share stories about couples who tried everything to have a biological child, and upon filling out adoption papers, got pregnant. Tsigdinos adds, “Those kinds of stories only make people feel like more of a failure.”
She adds a caveat, “Don’t, don’t offer clichés or easy answers. The worst thing you can do in supporting your friend is telling her to just relax. There isn’t any relaxing under infertility treatment.”
Amy McVay Abbott is an independent journalist from the Midwest, who focuses on health and rehabilitation issues. She is also the author of two books, both available on Amazon.com, A Piece of Her Mind (2013) and The Luxury of Daydreams (2011). These books are collections from her popular newspaper column, The Raven Lunatic. Follow her on Twitter @ravenonhealth or visit her website at amyabbottwrites.