Monday, April 26, 2010

Project If: What if....

This week, April 24-May 1, is National Infertility Awareness Week in the U.S. (In Canada, it's May 16-22, sponsored by the Infertility Awareness Association of Canada, IAAC), and Melissa (AKA the Stirrup Queen) has teamed up with Resolve to bring Project If to the blogosphere. An original, powerful list of almost 400 infertility "what ifs" on Melissa's blog has been narrowed down, & bloggers in the ALI community have been asked to choose a topic & write about one of their personal "what ifs." While I still find it difficult to talk about loss & infertility to my family & friends, I am more than happy to use my blog as a vehicle for enlightenment & change!!

As someone who is pushing 50, 12 years past her one & only (unsuccessful) pregnancy & 9 years past her last treatment cycle/into childless/free living, I found it hard to pick one of the "what ifs" from the list to write about. I'm still trying to deal with some of these "what ifs," to some extent -- but the raw pain has faded. I rarely cry over my infertility & loss these days, except perhaps on special "anniversaries" & days like Mother's Day, or when something comes out of left field to catch me off guard. A certain amount of bone-weariness has set in when it comes to certain situations & topics.

But yes, 9 years later, I still carry some resentment toward women who assume -- usually correctly -- that they will have no problem getting pregnant & for whom positive pee stick = living, healthy baby. Pregnant women still remind me of my own lost pregnancy, especially at this time of year, and I do sometimes feel "less than" (or "invisible," as per my last post) because I am not the mother of a living child.

One of the "what ifs" on the list reads, "What if… I have to learn to live childfree with a smile…forever?" For me, that's not a "what if," that's my reality.

For some reason, I think the "what ifs" that resonate the most for me at this point in my life have less to do with what lies ahead down the road (my journey has had enough twists & turns that I think I have trouble believing I have much control over what will happen anyway…) & more to do with second-guessing the past. I don't dwell on the past obsessively, but there are a few parts of my journey that I sometimes revisit & wonder... what if...

For example, I know some people might think we were foolish to postpone ttc as long as we did, & sometimes "what if we had started ttc earlier?" does pop up in my head. We were married for 10 years & I was almost 35 when I tossed out my birth control pills (after being on them some 13 years) in the summer of 1995. While I never thought I wouldn't be a mother, motherhood was not the only goal I had set for myself. I grew up in the 1970s and absorbed the message that anything was possible for the girls of my generation. I took it for granted that I would go to university and get a good job doing something I loved, and I did. I grew up surrounded by too many cautionary tales of girls who got pregnant before marriage, or right after, & had to abandon their educations for low-paying jobs or rely on their husbands, who struggled to make ends meet & maintain their marriages. I was determined not to be one of them. Children, most definitely, but not until I was good & ready for them, emotionally as well as financially.

I was unemployed for almost a year after we got married (having left my job to move to a new city to be with my dh), & we had absolutely no money. There were months when we struggled to pay the rent on our apartment. We didn't feel we could afford to buy a house until we'd been married five years (& were only able to do so thanks to the generosity of my FIL, who gave us some money for a down payment) -- & then once you have the house, of course, there's that thing called a mortgage hanging over your head. We did talk about "when should we?" after our second nephew was born in 1992, but got cold feet & decided to wait just a little longer.

My answer to myself for that particular "what if?" is that we did what we thought was right for us and for our future family at the time. I'm not sure some additional time would have changed the ultimate outcome. Perhaps it might have given us a little more time to explore our options. We might have felt differently about adoption, for example, if we had exhausted our other family-building options when I was 37 instead of 40.

I do keep thinking about one of the "what ifs" that I added to the original what-if list. I'm not sure which category it falls into. It was My "what if" was comment #124:

What if, instead of staying silent when my family dr reassured me (at 35 & 36) “don’t worry, it will happen,” I had listened to my gut & pressed him for a referral to a fertility specialist for testing then? Would having that extra time to explore options have made a difference in the eventual outcome?

I actually went to my family dr when we decided it was time to start ttc, for what I've since learned is called a "pre-conception appointment." I asked him whether we needed to wait a few months after I stopped taking the pill to let it "clear my system" (he recommended waiting three months, which we did), whether I should be taking any prenatal vitamins (he talked to me about folic acid), etc. He's an older father himself (& I suppose he didn't see any reason why we couldn't become parents at our ages as a result) -- a pretty laconic sort of guy, doesn't show a lot of emotion -- but when I told him why I was there, he gave me a big smile, & as I left, said he hoped I'd be pregnant soon.

When the three months was up, & we finally took the plunge, I expected I would be pregnant, maybe not right away, but certainly within four to six months. I knew I was 35, but -- having obtained just about every other goal I had set for myself -- I really didn't think this was going to be THAT hard. Everyone I knew or read about in my women's magazines who had had problems getting pregnant either had wonky menstrual cycles (not a problem for me, pre-pill) or some kind of sexually transmitted disease or had used an IUD (also not problems).

The first month I went off the pill, my cycle was 53 days long (!). The next three months, it settled into a 35-day pattern (my pre-pill cycles had usually ranged from 32 to 35 days), but the first month we actually started trying, I was late again. I was thrilled. Was I actually going to be one of those people who got pregnant on the very first try??

Nope, AF finally arrived after 49 days. The next cycle was 42 days long & the next was 40. I figured my body might still be adjusting, post-pill, & for many months, my cycles were all over the place. I took several hpts on my own, & whenever my cycle went over 40 days, I'd head to my dr for a blood test, which inevitably turned out negative. At each of these visits, & at my regular checkups, my dr would say to me, "Don't worry, it will happen." As time went on, though, & I passed my 36th & 37th birthdays, it got harder & harder to believe him.

It did eventually happen, in the spring of 1998, when I was 37, and had been trying for 26 cycles, or almost 2 & 1/2 years. Sadly, my pregnancy ended in a stillbirth at 26 weeks.

Ever the optimist, I figured that we had gotten pregnant on our own after trying 2.5 years of doing very little outside of what most people do to get pregnant. Surely we could cut that time considerably with a little more targeted effort on our part. We got our first computer (& Internet access) in 1996, but it hadn't even occurred to me to turn there for help while we were ttc. Looking for answers after our loss, however, I found a whole new world of message boards & information sites. I joined a private e-mail list for women trying again after a loss, bought a copy of Toni Weschler's "Taking Charge of Your Fertility" and a basal thermometer, & began charting.

When another year had passed, & still no baby, I sat my dh down for a talk. I would soon be 39. I could hear the clock ticking. Loudly. Surely we owed it to ourselves to at least have some tests run, find out if there was a simple reason why I wasn't getting pregnant?

And so we started down the slippery slope of infertility testing and treatment. I called up the ob-gyn I saw during my pregnancy & over the next several months, through the fall of 1999, he agreed to run some tests for us, the results of which were inconclusive. When he offered us the choice of a prescription for Clomid or a referral to an RE, I knew the RE was the way to go. Fortunately, he was able to get us an appointment within six weeks with a new RE who was just setting up practice in the spring of 2000. By late spring, I was doing monitored cycles with clomid; by fall, I was injecting myself with Gonal-F & heading for the first of three IUIs I'd cajoled my dh into agreeing to (negotiated after a session with an infertility counsellor).

By the time our journey ended, in the summer of 2001, I was 40, a mental & physical wreck prone to anxiety attacks & popping ativan, & about $10,000 poorer. We took a break for the summer, took stock of the situation & reluctantly came to the decision that we would remain a family of two.

I think we made the right decision in the end, and I try not to dwell on the "what ifs?" But sometimes I wonder: what if, instead of offering platitudes, my dr had offered me a referral to an RE for some tests, given our ages & the amount of time we'd been ttc?

What if, instead of taking my dr's word for it ("it will happen"), I had been more vocal about my concerns, asked earlier for help, for a referral, for some tests to be run?

What if I had asked for help right away after our loss, instead of muddling through another precious year on our own, only starting working with an RE after my 39th birthday?

What if I had not wasted so much precious time? Would the outcome of my ttc story have been any different?

*** *** ***

One other "what if," somewhat related:

When I was a little girl, I remember being sick, & hearing my mother referring to my "kidney problems." When I was about 6 or 7, I spent several days in a big city hospital having various tests run. I was X-rayed, probed. I had a catheter put inside my bladder, had liquid pumped inside & then had drs watch my bladder on screen as it spilled out. I took medication for several years (a lot longer than was probably necessary, I later learned).

I had several hospital stays of several days each over the years, which later evolved into a series of outpatient visits. (Since we lived several hours away from the city, this involved me & my mother staying at my aunt's & navigating the city bus system.) These hospital visits were highly traumatic for a child, as you might imagine. This was in the late 1960s/early 1970s, & my mother was not allowed to stay overnight with me, as parents are today in most children's hospitals. I can remember sobbing myself to sleep as I schemed ways to run away from the hospital. It was years & years before I could go to a hospital, even just to visit someone, without turning green. My best friend's mother, who had just had a complete hysterectomy, once remarked that I looked worse than she did.

Anyway -- I didn't completely understand what was wrong with me then, & I'm still not sure I have a complete or entirely accurate picture -- but my understanding is that one of my ureters -- the tubes which carry urine away from the bladder -- was not properly attached to my bladder. There was a slight "bulge" in it which created a "backwash" and made me susceptible to bladder and kidney infections. We were told this was a very common problem. Surgery was discussed, but they settled on a "watch & wait" approach. My mother was told that many children simply outgrow the problem, & that's apparently what happened with me.

I also did not realize, until I was actually pregnant for the first & only time, that one of my kidneys is smaller than the other. My mother told me to mention this to my ob-gyn, as the drs had told her when I was younger that I might have a "hard time" in pregnancy because of it.

I thought she meant that it would be taxing on my kidneys (as pregnancy is, even with normal kidney function), & that was part of it, of course. But it turned out there was more to it than that, although I didn't realize so until after my daughter's stillbirth.

I spotted all through my first trimester, culminating in a visit to the hospital emergency room when I was about 10 weeks along. An ultrasound was performed, & we heard the baby's heartbeat. All was well, or so we thought. The radiologist asked, "Did you you know you have a bicornuate uterus?" A what? No, I did not know. He explained what it was & drew a diagram. I asked, "Is this going to be a problem?" He assured me not, & told me a story about a woman who hadn't known she had a bicornuate uterus, got pregnant with twins, had a C-section, & one twin was found in one horn and one in the other.

I asked again & again as my pregnancy progressed and my daughter showed signs of IUGR. One u/s tech told me the baby appared to be growing in one horn and the placenta in the other, with the umbilical cord running between the two. There was something on the placenta, which turned out to be a small calcified clot. Did this have anything to do with my uterus? I asked. I kept being reassured, no.

I did some Internet research. Later, after my daughter was stillborn, I found information that indicated there very well could have been a link -- that women with uterine abnormalities experience a higher proportion of miscarriages & stillbirths. Moreover, women who have uterine abnormalities also tend to have a higher incidence of kidney problems.

After our daughter's stillbirth, when we turned to infertility treatments, I asked my ob-gyn & then my RE about my uterus. I had read that the problem could be corrected surgically, although there was some debate about just how effective the procedure could be. My ob-gyn was lukewarm on the subject. My RE didn't seem too concerned about it either. In fact, he finally asked to see the video of my HSG (done more than year earlier by my ob-gyn), & offered to do surgery (without promising too much in the way of results) only AFTER we'd already been through three injectable/IUI cycles & were on the verge of calling it quits. I weighed the prospect of surgery along with all the other factors -- & decided we were done.

So I wonder sometimes: were drs back then (in the late 1960s/early 1970s) aware of the co-relation between uterine abnomalities & kidney problems? Is this something they could have seen in my X-rays and other tests that were run at the time? Are uterine abnormalities detectable in a child? And if they did see something, why wasn't my mother told? Or is this what they meant by telling her that I might have a "hard time" during pregnancy? Did they tell her, & she just didn't understand what the implications were?

I will probably never know, but what if I had known about this problem & its potential implications for my fertility when I was younger? Might I have made different decisions about ttc?

Julie at A Little Pregnant recent posted about one drug company's innovative new campaign to encourage couples to "Increase your chances" & talk to an RE sooner rather than later. Sure, if they consult an RE they will be more likely to wind up using the company's fertility drugs... but the message is still a valuable one.

In its August 2009 report, the Ontario Expert Panel on Infertility and Adoption recommended that not only should the government ensure that all primary care practitioners are educated about fertility and related issues, but also that all primary care practitioners – including naturopathic doctors and doctors of traditional Chinese medicine – should make fertility education/counselling a routine part of care for all patients, beginning in their 20s, including males and females, those in a relationship or single (including those who are not trying to start a family), regardless of sexual orientation.

The panel also set recommended that doctors should offer fertility testing/monitoring to women age 28 and over who have been unable to conceive naturally after one year without using contraception, women age 30 and older, when they want to start a family or have been unable to conceive naturally after six months, and to the male partners of women who are undergoing testing. (Unfortunately, none of the panel's recommendations have been adopted to date.)

It's too late for me. I have moved on with my life (I'm trying to, anyway -- although I suspect that the grief I feel over my infertility & the stillbirth of my daughter will always be with me in some way).

But what if more couples listened to that nagging voice within, & asked for help at an earlier stage? What if doctors took their concerns seriously? What if certain medical problems were red-flagged at an earlier stage, so that young women were made aware that they might have difficulty conceiving?

*** *** ***

To read more bloggers' Project If posts, visit here. All blogs on the list will be considered for Resolve’s Hope Award for Best Blog, presented at the 2010 Night of Hope. Resolve will also be featuring a link to the blog on Resolve.org.

To read the original "what if" list, visit : http://www.stirrup-queens.com/2010/04/bloggers-unite-project-if/.

To gain a basic understanding of infertility, visit www.resolve.org/infertility101 .

To learn more about National Infertility Awareness Week (NIAW): www.resolve.org/takecharge.

10 comments:

  1. Great post!
    I just started seeing an RE in February. I am glad I did, it makes me feel more proactive.

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  2. Very thought-provoking post, Lori. Thank you for sharing. I have found that my own "what-if's" are one of the hardest things about this journey. They are always there, even when I am feeling more at peace with this childless-after-IF life, and I wonder if they will be there the rest of my life.

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  3. I found your blog one day while "blog-hopping". My DH and I stopped our TTC efforts 2 years ago (almost exactly to the day) after our 3rd failed IVF. We traveled the IVF mecca (CCRM) for that final shot and come home with nothing except complete devastation. I was 38 when we started TTC and we had been married for 9 years. We, too, waited and I, too, wonder what if.

    It's nice to read your blog and see there are others out there who have chosen to move on but who still struggle with "what ifs". It's just always nice to recognize that we're not alone.

    Thanks for continuing to write.

    - RK

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  4. Oh, this post really pulled my heart. I always love reading your posts, about how you have found peace on your path.

    But the what ifs - I get.

    I was proactive about heading to the RE early because I'm fortunate enough to live in a state where coverage is mandated. My RE diagnosed a bicornuate uterus from my first HSG. And still, it took more than a year, after 4 IVF failures, to correctly diagnose what it was - an apparently rare bicornuate/septate combination.

    If I didn't live in a state where coverage was mandated, I would have probably travelled down a much different path myself. And I expect I'd have very similar what ifs as you.

    Thank you for posting this.

    xxx

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  5. By the way -- Julie at A Little Pregnant says much the same thing as I do here, but better. ; )

    http://www.alittlepregnant.com/alittlepregnant/2010/04/what-if.html

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  6. Wow. What an incredible post. Thank you for sharing.

    Sonja
    ~What IF

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  7. Love this post. As someone who took 5-6 years before I actually went onto fertility treatments (and being older), I often wonder about "what if" my family dr had actually helped to push me along the path sooner.

    As thoughtful as ever.

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  8. After reading so many What If posts....yours has been the most powerful for me.

    Because I see myself in your words and in your experience. You are just further along in the process than me.

    Thank you for being so honest. Hugs your way.

    www.mrthompsonandme.blogspot.com

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  9. Thank you for sharing this.

    Doctors do need to know how to broach this subject with patients, too many times it's been swept under the carpet.

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  10. I found your blog when I did a Julie/Julia movie search! Very thought-provoking post. I love how women can talk and write so openly about these issues now, and it lessens the pain. Some of my best blog buddies have so many different stories- 40-something single mom (who had a hysterectomy) adopting a baby girl from Ethiopia, 50-something Canadian friends adopting from Eastern Europe, and some great US and Canadian people adopting through Reece's Rainbow, a special needs adoption ministry, which we are also doing. Then we have friends who can't get pregnant and don't want to adopt, who also made the decision like you to remain childless.

    Pregnancy, Infertility, Loss, Adoption- it's all a marathon and never ends.

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