Silent Sorority

Infertility Survivors Finally Heard

February 3, 2014

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.

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.”

See also  Take Back Your Power and Identity

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:

“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?
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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

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.


Book Musings, News Reports and Studies, Tapestry of Voices 11 Replies to “When Unexplained is the Modifier Assigned To Your Infertility”
Pamela Tsigdinos
Pamela Tsigdinos
Writer, blogger and, oh, yeah, infertility survivor. My memoir, Silent Sorority, tells the whole story. There's a movie in there somewhere. Given the quirkiness needed to relate it all I'm thinking Jennifer Lawrence would be a good fit.


11 thoughts on “When Unexplained is the Modifier Assigned To Your Infertility

    Author’s gravatar

    A number of things to say. First, congratulations on seven fabulous years of blogging. You’ve achieved an enormous amount, and I’m pleased to see there are no signs that you are going to stop!

    Second, this – “because even with treatment they do not have a better chance of conceiving” – shocked me. I had no idea that statistics show that IVF does not give a better outcome to those diagnosed with (however silly that sounds) unexplained infertility. As someone who, after two ectopics and with two blocked tubes as a result (they were clear earlier), turned to IVF, the fact the technique had been developed to help women like me still didn’t guarantee me success.

    Third, the question posed by a blog reader about talking to the realtor. The realtor raised the issue of her circumstances, and obviously was reaching out to someone who might understand. I think that absolutely it would be appropriate to share resources that might help her, or that might open up a discussion. If the realtor had not raised the issue, or had offered the information only in response to a question (THE question), then that would be different. I feel so sorry for this woman who was looking for understanding and empathy, when clearly she had found none in her relationship.

    Author’s gravatar

    I think what a lot of people don’t realise is that the first IVF is often diagnostic more than anything else. So in unexplained infertility, sometimes a lot of answers come from the number of eggs actually produced, the number that fertilised, the quality of the embryos, that kind of thing. Our diagnosis changed dramatically through IVF, once we realised that out of 43 retrieved eggs (two and a half IVF’s) we had never had one normal embryo. It moved us into a kind of back into an unexplained category, because reproductive science cannot yet answer what has damaged my eggs. But it is now still better explained than before, the eggs are fried, party over. IVF is really just a science experiment and the sad part is that it’s sold as a solution instead. It would be nice if fertility specialists explained the odds of success (much lower than most people think), and then explained the diagnostic value of the IVF. That way people could decide if they really were curious enough to (hopefully) get some answers, despite the low odds of success.

    I would have let the realtor have the book information. I am very open about my infertility, and I am amazed by how many people open up to me about their journeys as a result. When they do open up to me, I offer suggestions because I’m a big believer in sharing knowledge around this secretive world. The moment of realising that you are not alone, changes everything. But I don’t offer suggestions in the form of advice, more in the form of “I found xxx very useful”.

    Thanks for another thought provoking post!

    Author’s gravatar

    Your post is a timely one for me, as I’ve begun my hunt to help better understand my diagnosis of unexplained infertility.

    You hit the nail on the head, Pamela. IVF was designed for those with tubal issues or issues with gametes. Not unexplained. Yet too often those with unexplained undergo IVF as a form of diagnostics. All in the hopes that something will manifest and we’ll have answers. But very often we don’t, which was maddening for someone like me as I had been putting myself through the ringer that is fertility treatments only to be told it was all due to “bad luck.”

    There’s a couple of things that need to happen. The first being we need to stop lumping all cases of infertility into a single category with a single treatment. Following on the heels of that, there needs to be push back on this assumption that fertility is 100% a life-choice. Yes, I made the decision to go down this road, but a lot of it was out of my control.

    The second thing we need is more research. Implantation is poorly understood and assumed to not be dependent on other factors. I firmly believe we’re willfully missing a lot of information, which is due to society’s perception of infertility, the fact the industry is profitable and a general unwillingness to explore such a taboo topic. I’m hoping that in some small way I can help change this.

    Finally, I think the letter writer should speak up. What got me through the initial blows of this journey was finding others on this path. Without those connections, I would forever be lost.

    Author’s gravatar

    This is an eye-opening post. THANKS for this, Pamela!

    As to the question, if I were her, I’d definitely try to initiate the topic again with the realtor and I think I’d even bring her my copy of your book in case she feels ready to read it. :-) If she doesn’t feel ready to read it, then I’d at least tell her that I’m willing to listen if she wants to talk about it.

    Author’s gravatar

    Pamela, a post from you is always a treat & a very welcome diversion on a cold February Monday morning :) You make some great points & ask some tough albeit much needed questions here. A couple of things I wanted to say:

    * Great point about the over/misuse of IVF as an infertility cure-all. Kind of like wielding a sledgehammer when a simple swat of the hand might work. ;) I remember, when we were considering IVF, asking my RE what the advantage of IVF would be (vs further IUIs), and whether it would improve our odds. He said it might (might!) give him better information about my egg quality, and we would have more control over the number of embryos we would transfer. I remember wondering whether they would really get enough good information that would merit spending so much more money and subjecting myself to even greater levels of stress and drugs, etc. (particularly when I was already being debilitated by panic attacks & concerns about my health).

    * Happy blogoversary! I remember being so happy when I found your blog — someone else who was walking this same path, and writing about it in such a thoughtful way. It has been a pleasure & privilege having you as a companion on this journey.

    * Has it really been a whole year since we did the podcast?? I agree, it’s been a great year, and while we still have a long way to go, we’ve come a long way in a short time.

    * Thanks for the book tip, I will add this to my next Chapters/Amazon order list!

    * Jody Day of Gateway Women has referred to those of us born in the 1960s & 1970s as “the shock absorber generation” (Which is somewhat better than the “surplus women” who grew up during WWI & its aftermath, when there weren’t enough young men around to marry & have children with.)

    * Re: the reader question: I understand the hesitation. I’ve reached out to women who have lost pregnancies in the past and been rejected. In this case, I think it’s worth a try to reach out to the realtor — say you’ve been thinking about her and let her know that you’re willing to listen, if she wants to talk, and you have some resources that might be helpful. If she responds, you’ve made a new friend! If not, well, you tried. She knows you’re there if she changes her mind.

    Author’s gravatar

    dear Pamela,
    congratulations on seven years of your wonderful blog!
    I have read your blog for the last five years.
    (sometimes I wish I found you before – but then I wasn’t ready yet).
    I am really happy that I found your blog when I needed it the most.
    lots of love.

    Author’s gravatar

    Dear Pamela,
    Thanks so much for leading the way & writing such thoughtful & thought provoking articles.
    It’s staggering (not to mention very sad) that unexplained fertility has no better chance of success now than it ever had & that IVF has become the ‘norm’. We had treatment in the UK (over 10 yrs ago) the rationale our specialist gave for going straight to IVF was that in the USA patients have many more tests but in the end the success rates were no better & especially as I was 36 it was more important not to waste time. I have no idea whether that’s proven by stats. It did seem odd though, one minute you’re struggling & the next you’re in the middle of IVF.
    I have read & reviewed Jessica’s book & agree that the lack of emotional support & lack of empathy from clinic staff is staggering. This was also our experiences & it seems that this also hasn’t changed in the intervening years.
    Re the realtor, in line with what others are advising, I’d be tempted to reach out. I agree with Loribeth’s advise and maybe in hindsight, a simple ‘me too’ might have been very powerful.

    Author’s gravatar

    Thanks for this post, great food for thought as always! I will have to check out the book on Amazon. Regarding the Realtor question, I agree with Mali, she was looking for a friend and validation to know she is not alone, it is totally appropriate. Good luck!

    Author’s gravatar

    Pamela, thank you for a great post and happy blogoversary! I was just thinking about this paradox the other day and how so much has changed in just a few decades. I was watching a rerun of the pbs show Call the Midwife (despite infertility, I’m still fascinated by childbirth) and the episode dealt with women in the late 1950s not having access to birth control and how some became obsessed with trying to find ways to prevent their pregnancies from happening. And then I thought of my generation (born in 1972) and how for so many of us we are obsessed with our infertility and doing anything we can to try to up our chances at pregnancy. I do think that as IVF has become normalized it perhaps is often used as a way to make us feel better, as in hey, at least we tried something!
    Thanks for a thoughtful post!

    Author’s gravatar

    I’m opposed to IVF for religious reasons, which I guess you could suppose makes me pay it less attention (certainly, I’ve given it less attention than those who’ve actually used it), but I find the whole topic fascinating – no surprise there, I’m sure :). And I NEVER KNEW it was developed to deal with gamete and tubal issues only – although that makes PERFECT sense, and the near-universal prescription of it always has struck me as some sort of alchemy. That fact makes the women whom clinics encourage to try IVF seem even more exploited than I would have thought anyway. What a mess. (Also, I now want to learn more about the health risks for IVF babies – the article you linked to suggests that the health risks would mean IVF shouldn’t be used where trying naturally would likely work, but it seems to me that if there are documented health consequences, then these should be rigorously examined before ANYONE uses IVF.)

    Honestly, I think this all stems from the total desperation that overtakes women (and couples) in the throes of fertility treatment. Which goes back to the problems you’re highlighting: a culture that makes a baby seem as necessary as oxygen, with little appreciation for women who don’t become mothers; and clinics that capitalize on, rather than seeking to heal, the emotional instability of infertile patients. If infertile women/couples felt a genuine freedom to consider the benefits and drawbacks of their options, I think a lot of people’s paths would look a lot different. I never even used ART, and mine would have been different indeed. How many years of serious health problems have I secured for myself by using hormone supplementation until I got my endometriosis to stage IV? And yet I never seriously apprehended that risk. To this day I can’t satisfactorily explain why; God knows I have enough education.

    The “unexplained” moniker has held relatively less fascination for me because, on the one hand, I was never officially told, “You are not able to conceive because of ______.” On the other hand, I knew before I was even married that I had endometriosis. I had numerous cysts and adhesions, and I knew my hormone levels were a mess. Of course I did treatment to deal with all of these things, and even when my numbers got to where my doctor wanted, I never found that stick with the two lines, so I suppose in that sense, my IF was “unexplained,” though I viewed it more as one of the impenetrable mysteries of creation: we have a general idea what’s going on, but beyond that, who knows? I have not thought much about the more insidious problem of being unable to conceive despite having NO apparent medical abnormalities.

    As to the realtor question (which I either forgot, or missed when you posted it before): I agree with above commenters that the realtor seems to be reaching for a connection, but that “I found _____ helpful” is more palatable than “You have to read Pamela’s book.” (Even if she should!) I have struggled with this question in some situations as well; I find it simpler to share fellow-feeling, but am a bit more ginger about detailed medical information!

    And, congratulations on your blogoversary. You have no idea what this blog has meant to me as I’ve begun navigating a way through this wilderness.

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