Thursday, May 03, 2007

Are we sure one size fits all?

My mind is racing. I actually had a dream last night that I was back in high school—but a different high school than I went to. I was new there and couldn’t find any of my classes, so I just didn’t bother going to the ones I couldn’t find…for a whole semester I skipped them. Then I panicked that I was going to fail the classes, since I had never gone. (The most interesting part about that was that, in my dream, I actually thought there was a chance I’d be okay, even though I never actually went to a single class. Odd.)

I could go into more detail because the dream was vivid as it was bizarre, but I’ll spare you for now. And, I’ll also spare you from all of the Freudian psycho-analysis I’ve done on my own dream about hoping against all odds.

And, I will try to make sense of all of the things running through my mind right now, but I can’t actually make any promises. So here it goes.

I came across a fascinatingly timely article on last night entitled “What Fertility Doctors Don’t Tell You.” Um…wow. On the day I had this interaction with Dismissivo. That is freaky coincidental.

But, I digress…

The part of the article that made me think the most was this:

“The fertility industry has been far better at inventing awe-inspiring technology—and selling it to the public—than it has been at counseling patients about the risks of procedures and how these technologies will shape families, sometimes in ways they didn't anticipate.”

I actually think that’s a really interesting and fair critique of the industry. And it made me realize that I sometimes forget that the IF industry is different from a lot of kinds of medicine. It is a market-driven industry, and, there are probably as many snake oil salesmen (and women) in this industry as any—medical or otherwise. And that has an impact on the market itself as well as on how quickly you get ushered from one treatment to another.

In fact, as I look around our bloggy community, I see how few IUIs have actually worked and how many of us have been ushered right into IVF. And I wonder—is that because IUI has an inherently low success rate? Or, is it that doctors don’t give the time and attention to IUI that they do to IVF?*

In my case, I believe in my heart it’s the latter. On some level it’s a moot point now, since our insurance won’t cover any more rounds (and we in fact paid for the last out of pocket). But, I wonder if many doctors go through the IUI motions because they have to before they do IVF? It’s certainly clear that doctors believe, if you want to get pregnant, you do IVF. But, think about that. If that is their attitude, then why do IUI with them at all?

In hubby and my case in particular I’ve begun to wonder whether we’ve wasted these last few months. We have no known issues that IUI would fix. His count and motility are fine (great, even). I ovulate on my own and I can pinpoint it pretty well. So, what value are they adding? It seems to me that, if anything, just putting me on progesterone (since I have a short LP) would have been the better option. And, in fact, I now wonder if I haven’t been actively hurting my chances to get pregnant with the last few rounds of IUI? (Though I reserve judgment on this last round until we get the results.)

And, does anybody feel they’re getting the kind of personal attention you’d hope to get from your RE? Or, are you put on the same merry-go-round of treatments that they put everybody on before IVF?

And, the thing is, I don’t think the problem is my clinic alone. Mine is a world-reknown center for this stuff (whatever that means). And, ironically, Dismissivo is consistently rated a top RE. (Go figure. I’m happy to lend my thoughts to that rating system…)

But, the thing is, I suspect that Dismissivo is like a lot of REs—bored and more detached until you get into the more exciting world of IVF, ICSI, egg freezing, embryo freezing, etc. Those are the areas, after all, where they can actually control more. So why pay attention to and listen to a woman’s body when you can shut it all down and make it do what you want when you want it to, regardless of whether you’ve found a medically defensible reason to do so.**

And, I, on the other hand was putting my eggs (so to speak) and hope in the pre-IVF treatment baskets. I liked the idea of just giving my body and her natural processes a little nudge, a little leg-up to see what happened. And while I am open to moving on to IVF, I really wanted to sincerely exhaust all other options before I did.

So perhaps the problem was that our expectations were out of whack from the beginning?

And, it’s so frustrating that so many docs are so cavalier about IVF. I really believe that IVF should be a last resort—when the docs can with some certainty say that all other good-faith efforts have failed.

But for many of us, I don’t think they can say that. I know Mands from the Secret Garden mentioned in a comment once that her three IUIs were sub-optimal as well. And, Laura (the Reluctant Baroness) has a post that details how her first few IUIs were also a bust, likely because her RE was playing fast and loose with her cycles.

And yet, for all of us, rather than working to really get our IUI cycles right and give them the chance they deserved, I feel like our REs just shrug their shoulders and say, “oh well. Yeah, I kinda got that wrong. Let’s move onto IVF.”

What’s more, by being cavalier about IVF, REs are really minimizing the very legitimate questions and concerns that we women (and we couples) have. For example, the Slate article says that “IVF babies—not just twins, but singletons, as well—tend to be born prematurely and smaller compared to non-IVF children.” And that “there higher rates of birth defects, including bowel and genital deformations, as well as a form of eye cancer, among IVF children.”

Those are interesting findings. And, while I know we don’t have any definitive answers to these questions, shouldn’t our REs feel on some level obligated to raise these concerns with us? Even if they raise them only to debunk them in the next breath? I’d at least like to know about these questions, and about what my doc thinks, so that I can make an informed choice. And, if I weren’t the obsessive reader of all things IF that I am, would I even know the right questions to ask? And who’s responsible for making sure that all women/couples are given all of the information before they make such a weighty decision?

So I sit here, 11dpiui #4, wondering whether the past four cycles have been wasted? And wondering whether I have even asked all of the questions I should ask before deciding to move on to the next step—wondering whether there are questions hidden in studies that I haven’t yet heard about or haven’t yet read. And wondering whether we’re better off trying on our own (again) for a month or two before moving down the line to another ever-more-invasive procedure?

Of course, if we get a BFN (on our 32nd birthday), I reserve the right to change my mind and leap in the exact opposite direction.

But for now, I feel like I’m having a moment of lucidity and caution that’s telling me to just wait. To be slightly more suspicious of an industry—or at least a clinic—that seems to have a one-size-fits-all solution to this journey to parenthood. Sure, IVF might very well be the right decision for us. But we shouldn’t just let ourselves get pulled along a moving walkway without passing GO just because that’s what you do...even if we desperately want to be parents and to begin that journey as quickly as possible.

*To be sure, I realize that it has a slightly lower success rate. But I just am not sure our IUI cycles are being maximized.

**Don't get me started on my latest feminist tirade on that point…


Mary Ellen and Steve said...

I am sure that there are a lot of REs out there who are a bit crooked. It is most definitely a market-driven industry. It's hard to think about this though when you just want to have a baby. Good luck with the rest of your 2ww!

LIW (Lady In Waiting) said...

I really think that you are on to something. I have also been surprised by how many bloggers' IUIs have failed, though I have wondered if the successful cases happen to women who don't blog - or don't write blogs that I read.

Regardless, though, I really think that you have made some great points here. And I would bet that your sense that too many RE's save their energy for IVFs is right on target. In fact, I learned that my clinic no longer tracks success rates for anything BUT IVFs since one physician, the only one who tracked everything else, has left. I have the impression that IVF success stats are what are considered to be the most important in the industry. Which is kind of backward, for all of the reasons that you raise.

Thanks for this thoughtful - and thought-provoking - post.

Reproductive Jeans said...

Thought provoking for sure! Thanks for sharing that info on the article--and I had a lot of thoughts about IUI/IVF before we really got the facts that since we are dealing with MF, that our chances are "better" with IVF....but I still wonder if we could get it right with IUI...such a mind struggle!
I hope the end of the 2ww gives you only one thought: YAY/SUCCESS!

Laura, the (reluctant) baroness said...

Beautifully said (and, yes, lucid!) I completely believe that my RE treated my IUI as something trivial. Like LIW said above, the fact that no one tracks IUI success rates is problematic. If someone (like SART) held a microscope over these clinics, maybe that would put more thought into the precise medical indication for IUI, who gets it, and for how long.

The beauty of these blogs (among other things!) is that hopefully we can encourage each other to be educated consumers.

Wishing you the best 32nd birthday present that anyone could imagine.

Sarah said...

man i definitely felt the same way at my clinic. it seemed they were clearly in the business of IVF and they sort of tolerated the fact that most of us wanted to do IUI first. i felt like they didn't delve deeply enough into figuring out what was wrong.

after having done IVF, i see it a bit differently. i know my situation isn't that typical, but once we found the fertilization problem, which was not detectable any other way than doing IVF, i was just kicking myself for not doing ivf sooner.

i had this confusing thing right before ivf where my OB wanted to do a lap first just to rule out any last possibilities since we were unexplained, in case maybe ivf wasn't necessary. my RE was pretty confident after monitoring me for over a year that he wouldn't find anything, and she thought we should skip it and just do the IVF. i was so torn, because i didn't want to have to go to the last resort.

ultimately since the lap would have been more invasive than the IVF procedures, and since there was nothing indicating it, we went straight to IVF, and i'm so glad i didn't waste any more time trying to find a way out of ivf. i agree there are some real concerns about the focus of the business, but i think that most clinics focus on IVF because they want success as much as we do (okay, not quite as much), and they know IVF is a lot more likely to work.

(sorry to be so long about it)

Bumble said...

Mmmn, good thought provoking post... Of course IVF does cost alot more than IUI and gets the docs that much closer to their holiday home in the Bahamas, so you have to wonder. My four IUI's didn't work for me and so far I don't know one person it has worked for. Maybe they are just going thru the motions to get us into the next step, that will get them a good name, and extra dough in the back pocket. But if I could do it all again, I'd skip the IUI's totally, after all, hinsight is 20/20 and if I could have known that my eggs don't fertilize anyway, what alot of time and money that would have saved me. Maybe its a good thing to have problems like that diagnosed straight away rather than try til you're blue in the face with something that may not be able to happen without help.
Great post Bun!

Trish said...

FYI, my first IUI worked. I lost the baby at 9weeks, but I got pregnant on the first shot. I have a LPD and my husband has crappy swimmers.
We got lucky on our first IUI. He seems to have semen issues in addition to sperm issues and the post-wash number is usually about DOUBLE the pre-wash. So our first IUI we ended up with 28 million motile sperm. And boom.. pregnant.

Last month (First IUI post miscarriage. 2nd IUI overall) his pre-wash was less than 2 million, post wash 4ish million. (BAD!) no surprise it was a BFN.

We have yet to see the results of this last (3rd one.)

Here's my perspective.

I loved my RE. I DID feel like I had very personal relationship with her. (And only don't have her anymore because my stupid insurance changed.) The month of my BFP, I could tell I was Oing. My OPKs disagreed. I called and asked and she was willing to LISTEN to me and agreed to do my IUI the next day. Clearly, I knew what was going on.

Generally, I'm very anti-doctor. I really am. They're sort of a necessary evil to me. But this doctor.. I love her. She feels like a friend to me.

I agree that many, many doctors do play fast and loose with things. They treat us like morons and DO NOT LISTEN. But I think I'm living proof that when we work together, things can work.

Also. in the realm of IUI vs IVF much of my reading has shown IVF to not only be far more successful at producing pregnancy but as a diagnostic tool. All of a sudden they're poking around in there and they find some stuff they didn't know about. Perhaps if they'd have found that stuff out BEFOREHAND, the IUIs (or sex) might have worked.

All in all.. do what YOU are comfortable with. Even if you decide to try on your own for a while and it DOESN'T work and you do eventually move on to IVF and it works, you won't have to wonder IF it would have worked. Move forward when you're ready.

Ms. Planner said...

I am wishing (and hoping and, yep, even praying) that you have the BEST birthday. The end of the 2WW can be filled with so much pressure. Hope you are treating yourself right with some pre-birthday good times. You certainly deserve it.

xoxo, Ms. Planner

dmarie said...

My hubby and I had a convo about the business of IVF the other night. He seems to think about it a lot more than I do and really doesn't like feeling pressured (by docs) into IVF. Definitely something to think and talk about.

Ann said...

Thanks for this really interesting post. You know, when I saw the RE for my second visit in February, I said I'm really hesitant to consider IVF. His first question was why. In the midst of our conversation, he actually said the words, "Well, of course we want your money, but..." as an illustration that he did think IVF would be a good option for me.

I wasn't sure whether to be heartened by the fact that he got the money issue (the fact that infertility clinics make more off of IVFs than anything else) out in the open right away, or offended that he was addressing it in such a cavalier fashion. Yes, RE clinics want my money. Is that their primary motivator for recommending certain treatments?