Pamela Tsigdinos

a blog by Pamela Tsigdinos, Feb. 2, 2010

Barren. Unfruitful. Infertile.

These words offers up many shades of gray, don’t they? They certainly did for me, in particular, "infertile." I still remember the first time I saw the term in a brochure in an OB-Gyn office. I was much more naïve and younger then. My brain didn’t know how to process it -- going from “what’s that?” to “oh, not me!”

In time, I became embarrassed and shamed by the word. It wasn’t discussed openly. It was whispered about. Accordingly, I felt guilty about it. Condemned by it.

Society seemed most comfortable keeping the word shrouded in stigma. Until one day -- that being November 30, 2009 -- it was brought out of the closet. Held up under a different light and with the stroke of a pen it moved from a shadowy term with judgment hanging in the balance to an altogether new category:

Infertility = Disease

Yes, it was on November 30 -- just a few short months ago -- when the World Health Organization stepped forward to declare for the very first time that infertility is a disease.

This development didn’t make the newspapers or prime time. It was only in doing some research that I tripped over a press release that apparently got no press attention at all.

Here’s the press release headline, and an excerpt:

WHO Releases Glossary of Terminology in Assisted Reproduction, Defines Infertility as a Disease

The World Health Organization (WHO) and the International Committee for Monitoring Assisted Reproductive Technologies released a new international glossary of ART terminology. Appearing simultaneously in the journals Fertility and Sterility and Human Reproduction, the glossary is an important step towards developing common nomenclature and understanding in assisted reproduction.

Significantly the glossary defines infertility itself as “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse.”

The WHO's recognition of infertility as a disease represents a significant milestone for the condition.

As strange as it sounds, my heart raced a bit as I read the announcement. That thing that managed to turn my life upside down wasn’t some self-inflicted, shadowly illegitimate thing. It is a bona fide DISEASE!

William Gibbons, MD, President of the American Society for Reproductive Medicine (ASRM) took the words right out of my mouth with this statement:

With such a proclamation, we move that much closer to a new generation of women and men getting respect and help to fight a disease that has too long been overlooked and that now affects, according to a joint WHO-DHS Comparative Report in 2004 -- based on data evaluated up to mid- 2002 -- one in four married women of reproductive age in most developing countries.

I have all new respect for semantics.

a blog by Pamela Tsigdinos, Dec. 31, 2009

It’s an understatement to say that battling infertility is not for the faint of heart. Outside of those directly affected, some are better equipped to handle it than others. Infertility puts relationships to the test and, very often, the first to fall by the wayside are acquaintances and fragile friendships.

Take “Anna” who recently experienced a Facebook disaster. Now, when you’re unable to get pregnant, the last thing you want to see is someone gloating, bragging, -- okay, sharing -- their pregnancy chapter and verse in real time online. Anna knew in her heart that she should probably have stepped away from the computer when the pregnancy talk by a daddy-to-be reached the danger zone, but she didn’t. She engaged her Facebook friend in an encounter that escalated and left them not speaking with each other. In the end she blogged about her experience this way (and then suspended her Facebook account):

“Although my responses were definitely emotional, they were not written in an instant. I gave my friend two opportunities to back pedal. I thought very carefully about the things I wrote. I understand that my infertility is my problem and I can't take it out on others. However, as a member of a friendship, I have a right to expect some level of consideration and empathy. After all, that's what friendship IS!”

A few days later I heard from someone else who had the opposite problem: a friend whose empathy went a bit too far and made her uncomfortable as it dwelled TOO much on her infertility. She described a woman “who dramatically talks about our ‘empty arms’ and repeatedly says how her heart aches so deeply for us.” As a result, she says, said frend, “makes her stomach turn inside out.”

Granted, we’re all different in our needs and expectations. While there’s no one-size-fits-all recommendation guide for how to best offer support or help to those confronting infertility, there are a few things we can do.
It’s within our control to:

1) Decide how much we want to disclose -- when and to whom;

2) Speak up about what we need -- with the caveat that what works early on may need to be adjusted over time; and

3) Let a friendship go . . .

What remains are friends who’ve proven themselves willing to go the distance. It takes a particular combination of toughness and sensitivity to see someone you care about in pain, to know how to help and to be there with the right word or gesture.

Here’s to those who know how to navigate those rocky shoals!

a blog by pamela tsigdinos

This time of year typically gets associated with turkeys, holiday trimmings and deciding how to divide time among the relatives and friends who all feel curiously compelled to see each other in the last five weeks of the year. Toss in some infertility and stand back.

Yes, we’re looking at a recipe for stress, even for the best organized and well-adjusted, infertility-fighting diplomat, cook, or shopper. The usual challenges – playing chicken in the parking lot or fighting microboredom as we wait in endless department stores lines – seem positively quaint when there’s a bigger conflict looming.

I’m no Rogers and Hammerstein (or Irving Berlin for that matter), but I do know a thing or two about words and emotions. One way to lighten the sense of dread this holiday season is to distract yourself with a little creative exercise. You can play along if you’d like. Simply choose your favorite tune and engineer a little word swap. Become your own Julie Andrews changing the lyrics to My Favorite Things or Berlin’s White Christmas or the one that jumped into my head today, a play on the catchy tune, L-O-V-E by Milt Gabler and Bert Kaempfert.

I is for way you feel Invisible
N is for Never-ending waiting game
F is for the way you fight Frustration
E is for Endless round of doctor appointments
R is for the way you Rage at circumstance
T is for the Truly awful things people sometimes say
I is for the Insidious ways that cycles torture us
L is for the Longing to succeed
I is for the “if” in What If …
T is very, very Trying even in the best of times
Y is Yours to decide how You want to move ahead

Not a Billboard top 40 in any way whatsoever but a little attempt at levity and one more way to try to capture the complex intangibles that come with this thing we call infertility.

So the next time a pregnant woman or excited dad-to-be corners you to share their joyful developments, you can nod politely and hum along to the tune of your choice.

Take it from an infertility veteran whose worst holidays remain those involving my first and last IVFs. Unfortunately, my unsuccessful cycles coincided first with an all-but-mandatory, child-friendly work holiday party and last with a Big $#%&* Negative just ahead of a family get-together that included a non-stop recital from a pregnant relative who shared with me many breathless anecdotes about her impending delivery.

That was then and this is now.

What got me through it? I just repeated Gloria Gaynor's lyric:
I will survive.

a blog by Pamela Tsigdinos

We all have pipe dreams, right? Mine used to be that one day I’d get pregnant – without a team of reproductive experts.

That’s right, after the requisite nine months I’d leave the hospital with a bundle of joy combining the curious mix of Greek, Irish, Polish, Scottish descent – and as my husband once joked, “whatever else is in the woodpile.” Not surprisingly, I also hoped that our child would have my husband’s delightful, easy-going personality.

Yet, as anyone who has read my blog knows, that dream didn’t come true.

I have a different kind of fantasy now. It involves lights, cameras and action.

Now I’m no experienced casting director, but I know the perfect lead actors for an indie film I have in mind. (Humor me, there’s no harm in daydreaming, right?).

So Drew Barrymore has always impressed me with her performance range. She has the unique ability to portray complex, quirky characters -- strong but vulnerable, passionate women – with endearing, exceptional depth: think Little Edie in Grey Gardens, Lindsey in Fever Pitch and Beverly in the lesser-known Riding in Cars with Boys. And now she’s producing and directing, too. Perfect. She’s a natural for my little scheme.

That’s right, congratulations, Drew (I think she’d be fine with my informality though we’ve never formally met) — you are my first choice. Sorry Reese and Nicole – just know you were both on the short list for the film version of Silent Sorority. (For my better half I’d choose the actor, David Duchovny. If you’ve seen his recent work in the TV show Californication, you’d know he has the right mix of bravado, tenderness and steadiness.)

To be successful, Drew and I will need to capture the awkward, maddening essence of the infertility experience in an era of helicopter parents. This film project will require just the right blend of the absurd, the ordinary and the unexpected.

That’s because infertility doesn’t have a neat beginning, middle and end. It’s unpredictable and the implications bleed into all aspects of life, relationships and plans for the future. The screen play will need to channel the quiet, poignant, searching aspects of the experience, which just hasn’t gotten its due, on the big or little screen.

My new head-in-the-clouds desire is to capture once and for all what no one in the “fertile” world seems to fully appreciate about this silent disease. What it means to find out your body has failed you, to reconcile complicated identity issues, to negotiate the day-to-day bombardment of pregnancy announcements and to ponder abstract ideas like never becoming a grandparent surrounded by a new generation.

It’s a lot to cover in one film, but I think it’s do-able.

It’s time to focus attention on the real reality of infertility – not that portrayed by Kate Gosselin or Octomom.

a blog by Pamela Tsigdinos

I remember the first time I heard about the term Premature Ovarian Failure (POF). My first thought: what a downright cruel disease diagnosis for a woman who wants to have children. I’m in the endometriosis category myself but I’ve always felt a kinship with those combating POF.

That’s why I was happy to make the acquaintance of Catherine Corp, president of the International Premature Ovarian Failure Association (IPOFA). She was kind enough to answer a few questions leading up to the organization’s eighth conference in Houston on October 2-4.

Q. How prevalent is Premature Ovarian Failure?

It affects about 1% of the female population under the age of 40.

Q. At what age is POF typically manifested?

The average age of onset is about 27 years old! Often before women even think about having children. The dream is taken away before women really even start thinking about it. Even today with all we know it still takes about two years for a woman to get a proper diagnosis. She may go to three to seven health care providers before she finds out what is wrong. That is down from the seven to ten years it used to take.

Q. What are the symptoms?

There are a range of symptoms and each woman is different. The most common symptom is irregular or absent menstrual cycles. Women also have hot flashes, night sweats, loss of sexual desire, vaginal dryness that can make intercourse painful, dry eyes, lack of sleep, and irritability. Wouldn't you be irritable if you were having night sweats that caused you to be up on and off all night and couldn't sleep?

Q. Is there a way to prevent it?

No, and frequently the cause of POF is unknown.

Q. What are the biggest myths and challenges associated with Premature Ovarian Failure?

The myths among some health care providers include these gems: "You can't be experiencing menopause. You're too young. You are just under a lot of stress. Relax and in another month or two your period will return. Stop exercising so much. I've never seen a young woman with premature menopause and you don't have it either."

There are also myths from both health care providers and family/friends that would have a woman believe that POF is only a fertility issue, that it has no impact on overall health or that ongoing health care related to POF for reasons other than family-building is unnecessary. Not true!

Then there are the challenges from those who deny there are losses involved with POF. This denies women the opportunity to talk about the perceived loss of youth and minimizes the infertility aspect. The reactions typically include: "What's the matter? You know what you have now. Be grateful they came up with a diagnosis. Count your blessings, you’re not going to die. So what, you can't have kids, you can always adopt."

That last one always seems so dismissive and exhibits a total lack of understanding.

Q. What can family and friends do to help women diagnosed with this condition?

Listen to her! She needs to be able to talk openly about how the diagnosis is affecting her. Please don't minimize or dismiss her feelings. Ask what you can do for her. Maybe she'd like someone to make the phone calls to set up an appointment with a new doctor or she's overwhelmed with insurance questions and could use some help filling out forms. Be sensitive but don't cut her out of important information in your life.

It's not helpful to find out that your good friend is five months pregnant and she never told you because she was afraid of how you'd take it. It would be helpful to plan how to tell and where you tell her. In a crowded room with lots of other people rejoicing about the news isn't the way to go. Instead, plan a quiet time to talk. Most likely she'll tell you she's happy for you but sad for herself.

Also, please encourage her to put her health first. Women with POF require on-going medical care, including hormone replacement, in order to maintain a normal quality of life. Frequently, women get diagnosed with POF when trying to conceive. The quest for a child can become so consuming that women may end up minimizing their own health needs, or ignoring them completely. This can end up putting the woman at risk for several serious health issues, including osteoporosis.

One of my favorite things written about this is from the IPOFA book, Faces of POF. In the postscript we quote a woman who'd been asked, "What do you know now that you wish someone had told you when you were first diagnosed with POF?"

"[Ask] me: What does it mean? How do you feel? Here is my shoulder if you need to cry, and here are my ears if you need to talk."

The IPOFA's mission is to provide community, support, and information to women with Premature Ovarian Failure (POF) and their loved ones; to increase public awareness and understanding of POF; and to work with health care professionals to better understand this condition.

a blog by Pamela Tsigdinos

Constance? Earnest? Stalwart? Fred?

I haven’t named my elephant yet, but I really should since it’s been with me in whatever room I seem to occupy for quite some time now. Yes, infertility comes with its very own elephant – as if we need things to be any more crowded in the waiting rooms and doctor’s offices, right? (Can you just picture it? A room full of couples and their elephants??! . . . )

Sometimes my elephant is quite small -- chihuahua puppy sized -- easy to miss. Other days it dominates the room, so large that I can barely breathe, let alone move.

I suppose most major life-altering conditions requiring serious time to confront and work through come complete with their own elephants, but do they always stick around so long? My elephant arrived the day of my infertility diagnosis with a loud stomping, crash and lots of broken china. On the worst of the early days it trumpeted, charged and all but ran me over, one day missing me by just this much with its tusk.

Who knew an elephant could be so mobile? It comes with me to work, to the grocery store, to the library, the airport, the dressing room, even to church. Even when I don’t want to think let alone dwell on infertility (and that’s a conscious wish each and every day), it’s there, hulking in the background.

If my elephant could proof read, provide just the right metaphor or make a cup of coffee on those mornings when I’m up way too early to write that would be, well, fabulous. I suppose I did my elephant a disservice by not including it in my acknowledgments in Silent Sorority.

Be that as it may, it’s been loyal and it never forgets – one trait that I wish it wasn’t quite so good at mastering.

Since I stopped trying in vain to chase it out of the room I’ve found we’ve been getting along much better. Now the elephant seems content to graze over in the corner. I really should give it a name. That way I can call out to it and make sure that it is following me when I want to lead it to a new place.

One day soon I’d really like to help it find its way back to Africa. I’ve always wanted to see Africa, so it’s a trip to look forward to in more ways than one.

a blog by Pamela Tsigdinos

I have a few guilty pleasures. One involves gossip magazines. Some days I’m disciplined and look the other way when outrageous headlines leap off the cover in the supermarket line, others days I buy and dive in. The tamest of them all, People, gets delivered weekly to my house. Some issues entertain me, but one, in particular, makes me gnash my teeth: The editors’ seemingly endless fascination with celebrity “bumps” and carefully airbrushed angelic first family portraits.

I can’t help but wonder if the editors have ever given a passing thought to how much such seemingly innocent photos torture and mock those for whom pregnancy and delivery are elusive. Infertile readers must not be a large part of their reader demographics?!? My infertile brethren must be attracted to higher brow fare. ( Note to self: Raise your reading standards!)

Ah yes, pregnant celebrities. When twins are born to 35+ year-old celebrities, it’s only natural for IVF veterans (and those in the know) to surmise that a top-flight team of endocrinologists and embryologists played a part in the successful bundles of joy. What’s rarer than a snowfall in the middle of summer is when the celebrity -- who has no qualms about breathlessly gushing over of the amazing experience of greeting their little ones – goes on the record to acknowledge that a little extracurricular lab activity played a part.

In the vast majority of cases, celebrities who invite reporters by for post-delivery interviews and photos indignantly decline to answer if fertility treatments played a role, calling it a “private matter.” Among the most recent high profile cases were Jennifer Lopez, Angelina Jolie and Molly Ringwald. Seems they want it both ways – publicity when it serves their ambitions, privacy when they worry certain disclosures could detract from their perfect image.

Is it any wonder fertility treatments remain veiled in a shame and stigma?

I struggled for years with intense and unexplained shame about my inability to conceive and, until recently, felt compelled to hide my infertility out of a sense of disgrace. No one else was talking about it so it must be bad. The logic seemed sound, but it still bothered me that the topic remained so perniciously mysterious. And then a light bulb went on …

My revelation came in a recent New York Times piece on the return of the series “Mad Men” (one of my other guilty pleasures). In the words of one reporter:

“[The new season] lead[s] viewers to look back, aghast at, and enthralled by, a world so familiar and so primitive. Characters on ‘Mad Men’ struggle in shame and secrecy with the very things that today are openly, incessantly boasted and blogged about: humble roots, broken homes, homosexuality, unwed motherhood, caring for senile parents.”

Ah ha! Although there are quite a few bloggers chronicling their infertility challenges and journeys, the experience is hardly mainstream fare. The vast majority of the blogs are anonymous or password protected. Clearly many women and men are still struggling with infertility in shame and secrecy.

Until we have a more open, honest discussion led by role models and high profile examples, we’re likely to continue living our own modern Mad Men.

We may have come a long way since the 1960s but we still have a long way to go . . .

a blog by Pamela Tsigdinos

You'd think the people who gave us the "stiff upper lip" and protocol dictating "One must never touch the Queen" might be a tad reserved when it comes to reproductive issues, but that's just not the case.

Our friends across the pond are perfectly at ease expounding chapter and verse about all matters fertility. It's almost enough to make their more puritanical American cousins blush!

A visit to the larger British newspaper sites offers a distinct contrast to what we find closer to home, with routine reports on the biological, emotional and societal issues associated with conception - or the lack thereof. Consider this recent piece, "Women Urged to Test for Fertility at 30," which calls for greater education and awareness about an individual's likelihood for problems on the repro front:

"We should be teaching everyone, from childhood up, about all the factors linked to fertility potential, and how the huge range of things from lifestyle choices to genetic inheritance can have harmful effects on that potential."

Here, here, I say!

Then there's the "Fertility Files," a standing feature in the British newspaper, The Times, that makes no bones about the myriad challenges couples face in trying to create a family with headlines ranging from "Is Your Career Making You Infertile?" to "Food Packaging Chemicals Link with Reduced Fertility."

Outside of FertilityAuthority, you could spend hours online trying to decipher the more narrowly focused reproductive sites. They're difficult to understand primarily because they're aimed at the medical community, not your average Jane or Joe.

What do we get in the United States mainstream media? Tabloid headlines about Octomom and reality TV shows about super-sized families that all but equate a trip to the fertility clinic with producing a basketball team. They hardly telegraph useful information or highlight the more typical fertility treatment outcomes. At worst, they mislead couples who are blissfully ignorant (at their peril) about the myriad biological and environmental factors that can decrease the odds for successful pregnancy.

You can't help but wonder what today's teens or young women and men here in the U.S. think or know about their reproductive potential.

Until we routinely have candid and objective discussions about the complete fertility story (not simply those focused solely on prevention), we risk creating a new generation of otherwise healthy couples who one day will be shocked to learn that they're not the reproducing machines they were led to believe they were.

Now, tea and crumpets, anyone?

a blog by Pamela Tsigdinos

It’s maddening trying to live two lives at the same time – the life you always thought you’d live and the one you’re actually living. I know because looking back on my time in the wake of that special hell that is unsuccessful infertility treatments, your heart and your head are pitched in a fierce battle to reconcile what you so deeply wanted to create and . . . what you didn’t.

As I’ve spent time online in the infertility blogosphere, I’ve been witness to other women (and their partners) trying to square their lives. Their blog posts are eerily reminiscent, offering familiar refrains. I want so much to help alleviate their disquiet and their ache but I’ve come to appreciate that it’s the kind of experience that can only be helped with time and friends willing to listen and be there – not fixing, not judging – just being there.

Just this past week I came across two women, each in varying stages of disbelief:

a blog by Pamela Tsigdinos

Wouldn't it be nice if there was a tidy set of rules to guide conversations around infertility? An etiquette book sure would come in handy or, better yet, a simple set of instructions. Yeah, that's it! Just think of the applications. We could laminate them. Perhaps create coasters. Or Stickers? T-shirts? Encase them in glass and distribute as paper weights...

Sigh. We infertile folk certainly don't advocate censorship or misplaced political correctness but one has to wonder sometimes what happens to simple, good old common courtesy. Yes, we do our best to let random acts of insensitivity or misplaced hurtful comments from strangers or acquaintances roll off our back. We usually take the hit and walk it off with this handy explanation: They didn't know any better.

We also do our very best to reshape our lives and our expectations, to not focus on the losses, nor to let infertility define us entirely.

But what happens when someone closer to home drops a zinger into a casual conversation? For instance, recently one of my newest online pals told me she was innocently venting about a misbehaving dog only to have her sister-in-law respond with a harrumph and declare in a patronizing tone: "...that's because you've never taken care of a two-year-old..."

ZING. Wow. Ouch. Thanks, she thought, for that little reminder that yes, you are fertile and I am not.

It not only poisoned the moment it left a lingering sting. It unnerved her more than she anticipated. I know why. I've had similarly weird encounters. That's because while our friends and family are only too happy -- relieved actually -- to put our infertility firmly in the past, they sometimes fail to appreciate that it's not quite so cut and dry for those of us more intimately affected.

I'd hazard a guess that just about all couples who have lived with infertility have developed a thicker skin than most. We have to. It's a survival tool for the rough and tumble world that is infertility, but our skin is not so thick that comments still can't cut deeply.

Our wounds may not be open and raw. The scars may no longer be visible but, as my friend pointed out, "as much as I think I'm ok with who I am -- my infertility will always be an issue for me."

I'm here to tell you, dear friends, family, acquaintances and strangers alike: Infertility doesn't come with an expiration date. There is no point in the future when it's okay to be callous or indifferent.

Thank you in advance for your understanding. Now, are you in need of any coasters?