If you’ve read one breathless headline in popular media about the latest and greatest breakthroughs in fertility medicine you’ve read them all. Articles written about reproductive medicine routinely characterize assisted reproductive technologies (I.U.I, I.V.F., donor eggs, egg freezing and surrogacy) as a “sure thing” when, it turns out, close to 80 percent of the cycles performed annually around the world fail. It took some digging (since clinics are reluctant if not downright misleading about success rates), but the facts are spelled out on the European Society for Human Reproduction and Embryology website.
The distorted reality that fertility medicine equals ‘successful science’ is what led me and author Miriam Zoll to team up and co-author a piece to set the record straight and rein in the hype. We submitted a letter and and an op-ed to The New York Times entreating the editors to provide a public service by adding new voices to the often one-dimensional conversations.
And I’m happy to report the editorial team agreed with us. Our piece can be found here:
Selling the Fantasy of Fertility
Our op-ed had one mission: advocate for greater transparency from clinics to patients (and the public) so that couples planning for parenthood, and contemplating fertility treatments, can make truly informed decisions about their health.
As Judy Norsigian, executive director Our Bodies Ourselves, wrote in the Foreword of Miriam’s new memoir-expose, Cracked Open: Liberty, Fertility and the Pursuit of High-Tech Babies:
“Regardless of the reasons, more and more Americans are swarming to the doorsteps of fertility clinics with their hopes high and their pockets bulging with cash. Many do not realize the extent to which they are participating in a vast experiment, where evidence-based medicine has yet to establish a reasonable foothold. They surrender their bodies, sexualities, and emotional lives to the doctors, syringes, and drugs that might lead them into parenthood. They sign up willingly because they believe—and the U.S. media reinforces their beliefs—that science and technology have finally outsmarted Mother Nature, and that concern for women’s biological clocks is no longer relevant.”
This op-ed is only the beginning of movement to broaden the conversation.
Thank you for speaking up. The statistics are definitely misrepresented and, in my opinion, skewed. My one and only IVF cycle was cancelled due to my inability to respond to the meds. I was sent home, and told to call back in a few weeks for a second try. When I called to reschedule, the nurse refused to return my calls. I was basically forced out of treatment. We had chosen a Dr. with a good reputation (at least we thought so then) for his high success rate. I see now, that he achieves that by being selective of his patients, not so much because of his great skill. :/
Dear Jenny,
I’m appalled that you were treated so badly…what a testament to bad medical practice.
I love your article, and I am very thankful that in New Zealand, we do have quite strict regulations surrounding fertility treatments. Some are a bit strict – such as donor egg approvals, or surrogacy (even if your surrogate was a family member) – but the regulations on medication dosages, number of embryos that can be replaced etc, are welcome, even though I had to end fertility treatments as a result. (Unsuccessful at maximum – for NZ – dosage). Of course, most NZers aren’t aware of this, and like Americans and fertiles around the world, they just assume if you do IVF that you’ll be successful, that you can replace as many embryos as you want, etc etc.
Hi Mali,
Just surfacing from a week of being under fire from those who seem to take great joy in shooting the messenger. Appreciate your blog post
Fertility Fantasies
http://nokiddinginnz.blogspot.com/2013/09/fertility-fantasies.html
It provides added perspective about what Miriam and I laid out.
Ms Tsigdomos
I’m an OB-GYN, recently retired from private practice. In the days before IVF, generalist did 90% of the infertility work. In those days success was rare, so I’ve had the “it’s time to quit” talk with couples many times–I remember them all.
It’s well known that patients who fail treatment often illogically feel inadequate and blame themselves. I’ve personally experienced this. Having a physician discuss this is helpful, but much of the illogical malaise remains. I think having couples hear from the likes of you and Ms Zoll is a great help. You’ve been there, and that matters.
Thanks,
John Gilkey, MD
Dr. Gilkey,
Thank you for taking the time to comment. It’s refreshing to hear from those who have worked directly with couples and understand the great difficulty they face. Very much appreciate your empathy and insights.
Pamela,
It comes as no surprise to me that you could author such a wonderful, insightful, and compelling article. Well done!
Thanks, Delia! Great to hear from you.
Brava!
Your friendship, support and encouragement to keep telling the truth, Kathleen, is much appreciated!
Fantastic article Pamela. In the UK stats are available, but they’re not widely known and if you read the media you’d assume that it’s Ok to wait until you decide to have a baby, have treatment & all will be well.
I believe that it’s so very important to educate women on these facts and figures so that they can make their own decisions.
If I’d known all of this when I was younger my life may have been a whole lot different.
Many thanks
Lesley x
So glad to have connected with such a terrific group of women in the UK, Lesley. Keep up all the great work and advocacy. Look forward to profiling your work later this fall.
Thank you so much for writing this piece. As someone who recently dismounted the infertility roller coaster after many rounds of ART, it’s hard to share the feeling of “giving up.” I’m not sure if it stems primarily from my goal-oriented personality or societal pressures, but it is there and it is real. Thank you for giving it a voice.
You raise a great point, Abby. We have much to learn and share with others about what happens when ART fails. Let’s hope the climate changes so that our stories don’t face such harsh push back and societal pressure to remain silent …
I am glad that you & Miriam are shining some light on the shortcomings of infertility treatment and its aftermath… ART has been a blessing for many people, but as you point out in the article, the success rates are a lot lower than most people realize — and there is not a lot of support out there for the many people who leave the clinic without a baby (nevermind their health, sanity and savings). We deserve better — from the doctors and clinics, from the people around us — and from ourselves too.
Thanks, Loribeth. Your blog — and willingness to speak up — on behalf of women who come away from their child-bearing years without achieving motherhood provides a welcome place for those overlooked in today’s noisy mom-centric society.
dear Pamela and Miriam,
congratulations for a wonderful article!
Appreciate you sharing the story with your readers, Klara. It’s great to have an international platform!
This article was an eye-opener for me. Mainly because I believed the statistics that state 50-70% success rate for anyone undergoing IVF. Instead to see that it’s actually a huge failure rate really gives me pause. An it argues that we need to be pushing for evidence-based medicine instead of simply shooting fish in a barrel.
What I absolutely agree with (and think is certainly missing) is this viewpoint from society that fertility treatments ALWAYS result in a successful pregnancy. The psychological trauma that this causes a couple and the individuals is always greater because I’d this naive belief and it most certainly is time to do away with this myth.
Wonderful piece.
You’re a rare and welcome voice, Cristy for having lived on both sides of this issue and for your continued willingness to share the hard realities of infertility — physically, emotionally and financially.
After deciding to discontinue fertility treatments two years ago, my feelings of anger and inadequacy linger. No one talks about this. Thank you for giving us a voice.
You’re so welcome, Meredith. We may be a minority voice in society, but we represent a large population. Wishing you much peace and strength.
Can you nab Aisha Tyler for your speakers roster?? I had no idea who she was before yesterday — but she is my new hero. : ) The timing of her message could not be more perfect vis-à-vis your forum. :)
http://www.huffingtonpost.com/tracey-cleantis/no-more-whispering-talking-openly-about-infertility_b_3916776.html
I’m confused as to why you refer to yourself as an infertility “survivor”. Is it supposed to be ironic? By using that term, I’m reminded of rape or cancer survivors. Why should we frame infertility in that sort of discourse? I wouldn’t have thought that infertility is something to be “survived”.
Survive is defined as:
To carry on despite hardships or trauma; persevere:
Survivor is defined as:
a person or thing that survives
I survived the trauma of infertility. You can read more about the trauma here:
Recovery From Traumatic Loss: A Study Of Women Living Without Children After Infertility
http://repository.upenn.edu/edissertations_sp2/20/
Trauma of Pregnancy Loss and Infertility for Mothers and Involuntarily Childless Women in the Contemporary United States
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3113688/
and here:
Examining PTSD as a Complication of Infertility
http://www.ncbi.nlm.nih.gov/pubmed/9746683
Thank you for the article- to show that we do exist, and there’s no an “ALWAYS” outcome with IVF industry. For me, I never had the opportunity to try IVF treatments, since the doctor had already found the tumor. It does make me wonder now and then, if I hadn’t that tumor/cyst, would I have gone into IVF treatments? I suspect, reading this article would give me a pause.
We help each other by stepping forward. Thank you, Wolfers, for sharing your story.
Loved it! Thank you
Glad it resonated, Sandy.
Love, love, LOVE your poignant, truthful blog post and article! Thank you. Keep preachin’ it!
Lesli
With your enthusiastic support, Lesli, it will be easy to continue telling it like it is!
Hi –
Is the event on Friday, Sept 27 a film AND a panel discussion? Either way, my husband and I are Looking forward to it, and I’m especially looking forward to seeing / meeting women just like me.
thanks for doing this!
Hi Jennifer,
So glad you can join us! It’s a 90-minute program that will include a few brief segments of Irina’s documentary in development, accounts from a few of us who have grappled with this experience firsthand, discussions from a media perspective as well as a Q&A with an RE and mental health expert about the multidimensional impact. We’ll also reserve time for an exchange with those attending who want to add to the discussion.
Thank you for this article, Pamela.
I’ve saved it in my computer, so I can read it again, should the need rise.
While I was reading, I felt that that my choice to stop medication (I was not yet at IVF stage) has been the right one. I knew it, but, well, it’s nice to see it in print on a quality newspaper (and not only on the alternative therapies blogs I usually read).