When Unexplained is the Modifier Assigned To Your Infertility

I’m more convinced than ever that women born between 1960 and 1970 came of age at a particularly weird time fertility-wise. Think about it. In 1960 the birth control pill was made commercially available for the first time, and by the time we were wrapping our heads around how babies were made (or not if on the Pill), in 1978 knowledge about what was reproductively possible changed with the delivery of the first “test tube” baby conceived with the help of in vitro fertilization (IVF). Among my cohort, in the span of 18 years, everything we knew about fertility was suddenly viewed through the lens of scientific wonder.

From Science to Lifestyle Choice

A footnote* quickly became omitted, however, as a new conventional wisdom surfaced: conceiving children post 1978 was now a “lifestyle choice.” Fertility for all became the expectation. Choice though assumes that a couple looking to start a family has a good egg, a good sperm and a cooperating uterus. The assumption of success trumps the fact that for some not all necessary conditions for reproducing are available in the first place. Biology still carries many secrets — as those of us in the dreaded unexplained infertility category know all too well.

* IVF was developed for women with fallopian tube disorders and severe male infertility, but in recent years it has been applied to wider conditions, including unexplained infertility,” according to the team, led by Dutch-based Dr Esme Kamphuis.

Fortunately for consumers of fertility medicine new scrutiny is being applied to practices in the now $4B industry, and questions are being raised about when IVF should be prescribed. Recent news reports point to a study published in the British Medical Journal that concludes commercial pressure is partly to blame for the rise in fertility treatments and notes:

In vitro fertilisation (IVF) to help couples to have children is being increasingly employed on ‘weak’ grounds.

Along with medical journals raising concerns about the physical consequences of fertility medicine on women and the children born as a result my cohort is now pointedly demanding to know why more isn’t being done about the long-ignored emotional ramifications.

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The Same But Different

While all who darken the doorstep of a fertility clinic get lumped into one group there are significant differences in what brings us there and in our outcomes due to myriad contributing factors (age, inhibiting condition, years spent “trying,” etc.). With women stepping forward to provide details about their particular stories we’re seeing for the first time a richer tapestry. We’re also able to discern with more clarity that fertility operates across a very broad continuum.

The dirty little secret is that unexplained infertility confounds the medical establishment even today. Ten years ago the journal Human Reproduction provided this guideline:

“Under appropriate circumstances a basic infertility work-up after six unsuccessful cycles with fertility-focused intercourse will identify couples with significant infertility problems to avoid both infertility under- and over-treatment, regardless of age: Couples with a reasonably good prognosis (e.g. unexplained infertility) may be encouraged to wait because even with treatment they do not have a better chance of conceiving. The others may benefit from an early resort to assisted reproduction treatment.”

Re-read the bold type. Therein lies the challenge for doctors and couples. It also raises an ethical question: When is it bad medicine to engage in a procedure that may not actually work?

New Voices

There are no easy answers when the path isn’t clear. In reading In Pursuit of Motherhood, an intelligent, thoughtful memoir making its debut this week, I was taken back inside my own maddening diagnosis and treatment of unexplained infertility. It’s been a privilege to get to know the author, Jessica Hepburn a gifted story teller, via email. Born in 1970, she  is seven years my junior. In comparing notes I learned that Jessica and I had a surreal baton handoff of sorts. She and her husband scheduled their first fertility clinic appointment in the U.K. as I was 41 and filing away my IVF materials and donating the onesies and other items I’d accumulated through my hopeful 30s to charities supporting the California community where I lived.

In her book she recalled a “blissful time, when you’re uninitiated in what will all too soon become emotionally draining obsessions.” With a clear engaging voice she invites us to come along on the unpredictable and difficult quest familiar to so many who experience unsuccessful fertility treatment but whose stories remain unheard or misunderstood. Here’s one passage that frames the conundrum:

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“I was at a talk today by a leading academic. He was speaking about the difference between things that are complicated and things that are complex. Cars and computers are complicated. It’s difficult to understand how they work, but if you put in the time and effort you’ll get there in the end. Things that are complex are much more difficult to fathom. There are so many subjective variables that it may be impossible to ever really know the answer. He was talking about cultural theory, but it made me think about my infertility.”

In writing and speaking openly about her experiences she hopes to “encourage other women who are living with infertility to stand a little taller too.” (If you’re in London you can meet her in person this week at a book launch event in Covent Garden).

Her book, which I recommend highly, not only adds a refreshing new voice to the repro lit category, it also raises important questions about the shocking lack of attention paid to the emotional side of infertility. Jessica has done a great service in sharing her story, which involves 10 IVF cycles across multiple clinics. She brings into view the magnitude of the infertility impact. Putting down the book I wondered:

  • How did IVF become the go-to procedure when it was initially devised for a narrow set of fertility-inhibiting conditions?
  • How much can we trust those selling fertility medicine?
  • Why haven’t clinics been held more accountable for their glaring lack of emotional care?

Whether women and men are subfertile, living with long-term unexplained infertility or confronting age-related fertility loss what we all share in common is that once we step into a fertility clinic we’re treated like malfunctioning machines. As Jessica makes clear:

“Fertility clinics — however high their success rates — are crap at the psychological stuff…if you’re lucky you might be offered a counselling session. But in all my years of going through this, I haven’t yet found a clinic that has ever proactively encouraged us to take up that session or asked what we’re doing to sort out our minds.”

Collective Wisdom

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As I embark this week on my eighth year in the blogosphere I’m happy to see my generation shaking off the shame that once surrounded the inability to conceive and bringing a new reality to discussions about what is and isn’t possible reproductively — and where the collateral damage lies. For example, one year ago this Super Bowl weekend Loribeth and I were guests on the Bitter Infertiles podcast. The candid conversation created waterfall discussions in communities of women 42 and younger, still engaged in or coming to terms with ending fertility treatment. Until the industry does a better job of caring for the emotional needs of its patients our collective wisdom can help others.

On that note, I received this question from a long-time blog reader. I open up the floor for others to share their thoughts on the best way help:

This weekend past I met with a realtor. During our tours I said my husband and I don’t have kids and it will just be us and the dogs. The realtor immediately said that she can’t have kids and they don’t know why and she and her husband are no longer together because of it. Once she said that I knew why she had that vacant look in her eyes and pain and a sadness about her and wanted to hug her. Having just met her we didn’t talk about it again. My question to you is should I mention your book and your path and knowledge to her? Or should I just keep it professional? As we don’t like to hear ladies go on and on about their children do I dare bring up the story of our not having them and go on about it? I would appreciate any advice you have.