Not Brought To You By Big Pharma Or Profit-Driven Fertility Clinics
In a Telegraph newspaper column, It’s adults, not teens, who need a sex talk, UK journalist Bryony Gordon describes a friend who runs a fertility clinic in central London who is:
…slack-jawed with amazement at all the highly educated, highly paid, highly functioning couples who pass through her doors every day with only the most basic notion of reproduction. ‘People honestly think IVF is a cure-all!’ she squealed the other day. ‘I want to shake them! I want to say, ‘Do you know what it involves? Do you know how heart-in-mouth horrible it is?’
Those of us who have lived through IVF clearly know how horrible it is but, truthfully, the basic understanding of reproduction has been obfuscated by conflicting headlines about reproductive medicine and what it can actually achieve. Compounding the confusion, the dark side of IVF has been a pretty well-kept secret.
Consider this. It’s been 54 years since the birth control pill became widely available (thanks in part to research involving infertile women), and 36 years have passed marking the birth of the first in vitro fertilization (IVF) baby. Until now we’ve relied on those who profit from selling fertility drugs and treatment to control the conversation. The carefully cultivated narrative complete with the fairy tale ending doesn’t include the ‘heart-in-mouth’ horrible aspects of the procedures because, let’s face it, is bad, bad, bad for business.
Scarier, still, without the benefit of longitudinal health studies, those of us who have engaged in assisted reproductive technologies (ART) and any children resulting from IVF have largely been involved in a huge experiment.
Our collective experience and what IVF does to our body, hearts and souls is starting to come to light. While the success stories have had lots of visibility, the flip side has been under-reported. Those who experienced failed treatment and trauma are only now stepping forward to openly and honestly acknowledge and address the physical, social and psychological tolls associated with reproductive medicine and treatments.
With the benefit of reflection and healing — and having fully come to grips with what we’ve experienced — a new generation of women are now willing to share valuable lessons. This is where I need your help. Below you’ll find links to a set of independent resources, articles and perspectives. I’ve created a new page (see nav up above) to house the links.
Welcome your addition to this list so we can continue to grow the body of knowledge and provide a fuller picture of what’s involved in IVF and related fertility procedures. Decision making about reproductive medicine will come much easier to the next generation if they have knowledge and access to information well before crunch time. Knowledge is power.
Government Data
CDC – Assisted Reproductive Technology (Monitoring outcomes of technologies that affect reproduction has become an important public health activity)
Grassroots Groups & Initiatives
Our Bodies Ourselves (Trusted information on sexuality and reproductive health)
We Are Egg Donors (Grassroots group whose mission is to advocate for any health initiatives that make donor health a top priority)
Facts about ART (compiled by health and human rights advocate and Cracked Open author Miriam Zoll)
Emotional Health
The Dark Side of Fertility Treatments (Psychology Today)
Fertility Chief Calls For Clarity on IVF Pros and Cons (BBC News)
Fertility treatments may put women at risk for PTSD symptoms, study suggests (NBC News)
Failed IVF Attempt Tied to Depression, Anxiety (Reuters)
Childless Women and Infertility (Psych Central)
Bioethics
Assisted Reproduction (Frontline)
Ethical and Psychosocial Impact of Female Infertility (University of Texas)
Academic Research
Study: Recovery From Traumatic Loss: A Study Of Women Living Without Children After Infertility (UPenn)
Study: Variation in Distress Among Women With Infertility (Oxford Journal)
Study: “Trying” Times: The Medicalization, Intent, and Ambiguity in the Definition of Infertility (Alfred University)
Exploring Epistemic Injustice Through Feminist Social Work Research (Karen Bell explores women’s experiences of assisted reproduction and injustice)
Constructions of “Infertility” and Some Lived Experiences of Involuntary Childlessness (Karen Bell argues that the dominant construction of “infertility” is partial, biased, and inaccurate and that it serves to maintain infertility as a “woman’s problem” to be addressed ideally via biomedicine)
Klara
I agree – Fertility treatments put women at risk for PTSD symptom and failed IVFs are linked with depression.
I know what I am talking about, I have had 10 failed IVFs.
Yes, knowledge is power. I wish I had known more before. But, entering into any fertility clinic where they have those huge walls of babies …. it is easy to be tricked into believing that you will get a baby eventually, you just have to keep trying.
One day I would love to read all 202 pages of Marni Rosner’s Recovery from traumatic loss.
I read there: Findings suggest that it took, on average, 3-4 years for the women to fully emerge from feeling like being infertile was their primary identity.
Which is perfect. Which means that I am almost out of the darkest years of my infertility.
Kinsey
I must confess that while I (we) never went as far as IVF, I still have PTSD-esque symptoms whenever I think about the whole RE experience, drive by the hospital where the office is, etc. I don’t even want to think about how much worse shape I’d be in if we’d actually gone through with IVF. Usually I consider myself to be strong, smart, and confident, but the RE experience made me feel weak, powerless, and small. I am so thankful that I had so many resources at my disposal that I could research IVF outcomes for my particular situation (which were terrible) and the strength to say no even though I was being pushed towards it.
I downloaded the Rosner dissertation for some light reading once the semester is over.
I love your list so far! I’ll go through my “random infertility articles” folder and see if I can find some resources to add to your list too. Are you looking for research articles, articles from mainstream media, or both? Also, if you ever need the full text of a research article, I can get it for you (for free!), just hit me up.
Pamela Tsigdinos
Excellent, Kinsey. Good to know that you have such a wealth of information available. I’m interested in research, studies and articles that reflect the health risks, be it lay person-focused (e.g. BBC) or more technical in nature as long as it doesn’t require a PhD in, say molecular biology, to parse the meaning. Thanks for reviewing your folder and files. Like you, I will continue to search and post information as I find it. I am also interested in the cultural, sociological aspects.
To wit, I remembered reading about Karen Bell’s research: http://aff.sagepub.com/content/29/2/165.abstract
I’m going to add this to the post (and the Knowledge/Resources page).
Kinsey
There are perks to working in academia and virtually unlimited access to scholarly journals is one! I’ll go through my folder as soon as I’m out from under the avalanche of grading that has me buried. Surprisingly (or maybe not) I’ve already read the Bell article.
Thanks to rainy, cold, crappy weekend weather and general insomnia, I took the time to read the Rosner dissertation on Saturday night/Sunday morning. Her writing was captivating and I really connected with the stories of the women she wrote about. This is the first dissertation that has reduced me to tears. Reading about others like me, but who have come out on the other side stronger, makes it feel not quite so lonely.
Marni Rosner
Kinsey, so happy to hear reading the dissertation made the infertility experience less lonely for you. I promise – it does get better. And thank you for saying that the writing was “captivating” and that you were “reduced to tears” – that is, literally, music to my ears. So kind of you.
Wishing you the bluest of skies! – Marni
Kinsey
Your dissertation is definitely the biggest source of individual stories all in the same place that I’ve found! You should publish more on this topic (yes, I’m conveniently ignoring the time commitment for a qualitative study of this nature)!
The lonely feeling is getting better. Not all the way there yet, but it’s definitely better than a few months ago! Thanks for taking the time to respond to me!
Cristy
It’s so true that our society is generally clueless about reproduction and fertility treatments. I’ve met MDs who believe it’s simply a matter of taking a pill to resolve infertility. The trauma that comes from one round of IVF, never mind multiple rounds, is completely unknown.
A couple of years ago, Leah Campbell wrote a post that rocked the ALI community about why she would never do IVF again. It pissed so many people off. And yet, it was the first time people were willing to admit that fertility treatments can be very damaging. And her observations about the drugs, the procedure and the trauma of failure were spot on. I’ll send you the link when I find the post.
Pamela Tsigdinos
Thanks, Cristy, for sharing the link to Leah’s blog about her experience with IVF: http://www.singleinfertilefemale.com/2012/02/the-truth-about-ivf/
To Klara and Mali’s point, once you have lived through it, the risks become more real.
Mali
The irony is of course that those who know most about how our bodies work, the details of reproductive health, and the risks and realities of IVF and assisted reproduction, are those of us who had to go through it. Some of us may not have anything to show for it, but damn, we know a lot! (I once had a friend try to tell me how to take a pregnancy test! if there’s one thing I’m an expert on, it’s how to take and read a pregnancy test, what it tests, how reliable the tests are, etc etc.) And after learning how to chart my cycle, I felt that it should be taught to every girl in her early teens.
The only quibble I had with the article was the slightdismissal of the sex education that talks about chlamydia. Chlamydia is a major cause of ectopic pregnancy and tubal infertility. It is very appropriate that it is being taught in sex ed classes. But ultimately I agree with Ms Gordon and wish they were teaching so much more. And that the members of the media who report on sexual health and reproductive medicine were more informed.
Thank goodness for people like you, Pamela, and all those others who are reaching out to the wider populace to raise the level of understanding and debate.
Pamela Tsigdinos
Whether in New Zealand where you reside, Mali, the UK, the U.S. or anywhere in between it’s great to see a chorus of voices moving the conversation out into the open. We have so much to learn from each other and our experiences
the misfit
I think this is an inspired effort, but a daunting one, for it encompasses vast swathes of human existence. As you note, Pamela, this doesn’t really start or end with ART. Contraception and abortion are fraught with essentially similar issues (and as a bonus, if you’re really unlucky, pursuing one of those can lead you to the need for ART as well – like a grand slam!). We as a society want to discuss the AVAILABILITY OF something as a positive, because from a philosophical (not to say sterile or even inhuman) perspective, its existence on the spectrum of choices broadens the field of human endeavor. And this does sound positive. But before we embrace more numerous options (whatever those may be) as an unmitigated blessing, we must ask ourselves about their cost – to women and their children, to men, to all of us as a society. This is challenging in a sound-bite culture, but I think we have to stop celebrating “freedoms!” and ask ourselves – what is this freedom FOR?
And I have to add that being able to examine this issue more thoughtfully is a precious luxury born of, oh, yes, going on three years after ceasing fertility treatment – I nodded along with Klara’s comment, above, since it’s been a while since I read Dr. Marni’s dissertation. I actually never did ART, and I can only imagine the further burdens I would have carried from even more invasive treatments; but I was no stranger to the conviction that options which exist must be pursued, and the loss of self that seems inevitably to follow. The women still in the trenches – and those yet to come – you are very much in my thoughts.
loribeth
Well, I never did IVF, for precisely some of the reasons you & the others here have articulated. Three IUIs devastated me physically, emotionally & mentally; I was frightened about how I would react to a failed IVF, where the stakes (including financial costs) were so much higher. I’m not sure if anyone is truly prepared for everything infertility treatment entails, or if they are really wiling to take a good look at both sides of the coin, particularly when it’s early in the process when hopes are running high — but I think everyone deserves to have all the pros & cons laid out before them (whether they choose to pay attention or not).
You’ve compiled an amazing list of resources here, Pamela — some I’ve read before & some I haven’t. Thanks!