Like wide-eyed pioneers, Michael and I had ventured into a wildly unregulated and subterranean branch of medicine. Most of the information circulating about I.V.F. predominantly focuses on its successes; there is virtually no counterbalance to inform us about high failure rates, its devastating effect on couples, or its bioethical conundrums. So herein, abridged, are 10 things I wish someone had told me before I embarked on my ride through hell.
1. You Will Probably Be Physically and Emotionally Traumatized. I found that the side-effects of the drugs, the constant prodding and probing below my hips, and the repeated failures, miscarriage, and devastatingly dashed hopes brought me to the point where I sought treatment for post-traumatic stress disorder (P.T.S.D.).
A study by Allyson Bradow, Primary and Secondary Infertility and Post-Traumatic Stress Disorder, confirms that women who experience failed fertility treatments often exhibit symptoms of P.T.S.D.. Close to 50 percent of 142 participants in Bradow’s study met the official criteria for the disorder; that’s about six times higher than its prevalence in the general population.
Those of us who bump into age-related infertility end up confronting two tragedies: the loss of our deep primal desire to birth a baby and the realization that we guzzled the Kool-Aid: we built our entire “women-can-finally-have-it-all” adult life on an illusion.
2. Your Sexuality Will No Longer Belong to You. In order to endure the physical and emotional strain of multiple I.V.F. cycles, you will eventually detach from your body and your sex drive. This is almost inevitable, as the doctors will control, through drugs and technology, what used to be controlled by Nature.
By the time I reached The Donor Egg Phase, sex equaled stress. It meant needles and Petri dishes, stirrups and vaginal probes. It was associated with disappointment and guilt and pain. Most nights I cried myself to sleep.
3. You Will Blame Yourself. In 2012, the European Society for Human Reproduction and Embryology reported that the global A.R.T. failure rate was as high as 77 percent. In the U.S., treatments fail close to 60 percent of the time among women younger than 35, and 88 to 95 percent of the time among women older than 40. This glaring omission of information from most mainstream media results in women blaming themselves for failed cycles rather than understanding that this fragile science has consistently missed its mark two-thirds of the time or more since 1978.
In my case, as cycle after cycle failed, I buried myself in a tomb of self-blame so disabling that I was unable to work for one full year. It was my fault my ovaries weren’t producing enough quality eggs. It was my fault we waited too long. It was my fault we had a miscarriage. I was an expert when it came to contraception, but I was embarrassed about my ignorance regarding reproduction, and angry with myself for how blindly I entrusted doctors to work their magic in a laboratory. I was a failure in every way.
If I had only tried harder….
Fortunately, former infertility patients and advocates are beginning to talk about all of this publicly, and the first independent forum to crack open the myths and hidden realities of infertility and the power of science to reverse it, The Cycle: Living A Taboo, took place in New York City in September 2013.
4. The Absence of the Sacred Will Deplete You. Fertility clinics and their staff are focused on manufacturing embryos, not on counseling patients compassionately after miscarriages, stillbirths and negative pregnancy tests. I often wondered what the doctors and nurses thought about me, the human being, as I lay on the gurney, and when I eagerly signed up for another cycle only days after my miscarriage. Did they feel sorry for my desperation, which kept them employed? Hooked into stirrups, did I have a face, a husband and a life, or was I just another older woman trying to have a kid?
A few months after our second donor was diagnosed as being infertile, we finally, for the first time, sat in a room with other couples in the same situation. A minister’s wife told the tale of how she’d adopted four children whose mother could no longer care for them.
Only minutes into her story, the dam inside of me broke loose and a river of tears began streaming down my face. This was the first occasion since we’d begun the arduous baby-making process that we were communing with people who actually talked about the sacredness of the path toward parenthood. Never once during treatments had clinic staff even mentioned the beauty or spirituality of creating and stewarding new life.
5. Treatments Involve Health Risks. In a branch of medicine that is still very much experimental, I injected into my body whatever drugs the doctors thought might help me become pregnant. I am an educated woman, a researcher and writer by trade, a feminist, and yet I became an obedient guinea pig.
When I finally stopped treatments and was invited to join the board of Our Bodies Ourselves, I learned that there is scant evidence-based research about the long-term effects of treatments on women’s and infants’ health. Existing data does show an increased risk between certain fertility interventions and breast, ovarian and endometrial cancers, among other side effects, and a 26 percent increased risk of birth defects in I.V.F. babies. The common practice of implanting multiple embryos is known to pose serious health risks to mothers and infants, including pre-term delivery, low birth weights, and costly hospitalizations.
The effect of treatments on egg donors has been even less studied, yet we do know that side effects can include blood clotting, infertility, and ovarian hyper-stimulation syndrome, and in some rare instances, death. Potent drug regimens can create as many as 30 to 60 eggs in one cycle, as opposed to the solo egg a woman naturally produces during her period. (You can learn more in the film Eggsploitation and from the group We Are Egg Donors.)
On the positive side, there is now the Infertility Family Research Registry (ifrr-registry.org) that invites women going through A.R.T. to submit information about their health and that of any offspring. Of the roughly 500 clinics in the U.S., however, fewer than 100 have signed up to promote it.