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Sunday, July 25, 2010

Ignorance is Bliss, But Sometimes It's Not

Heather at "Can I Get Some Sugar With These Lemons" recently weighed in on this article in Elle written by a woman who became pregnant with twins after an IUI and then struggled over whether she should undergo selective reduction. Heather wrote a scathing but altogether reasonable reaction post here, mainly criticizing the author's ignorance of the multiples risk that was inherent in the procedure she chose to pursue, and also speculating as to the negative perception of infertiles this article would produce among the general public.

And I totally agree with Heather.

But, I can't say that I am at all shocked by this author's ignorance.

Because, here's the thing: I think that infertility bloggers tend towards the opposite end of the spectrum. We are the over-informed consumers of ART. We not only know that a doctor "transfers" embryos instead of "implanting" them, we also know what E2 is, we know how much of it you need per follicle for there to be viable eggs, we know how big those follicles generally need to be to hold viable eggs, we know how high our progesterone should be, we know what FSH is, what MTHFR is, what endometriosis is, what RPL stands for, we know about thyroid problems, we know about PCOS, MFI, morphology and motility. We know based on a beta number and the number of days past ovulation whether to cheer for a fellow blogger with reckless abandon, or whether to cheer for her with words of encouragement and hope. We know that cramps mean nothing. We know that boobs mean nothing. We know that google lies. We know that google tells the truth. We know too much. And I dare say, we may be the outliers, and the author of this article may represent the average IF patient.

Do most IF patients trust their doctors? Do most IF patients get all their information from their doctors? Do most IF patients base all their decision making on what their doctors tell them? Is this a reasonable way to go through IF treatments?

At this point I'd like to relate a story from my own journey through infertility. After 6 months of trying on our own, using OPKs and charting, and having nothing to show for it, I took the first step of making an appointment with my OB/GYN to ask about next steps. The appointment lasted, oh, 5 minutes. He said to me "I'm going to give you a prescription for something that helps a lot of women get pregnant. Take this for 3 months and if you're not successful I'll refer you to a fertility doctor." The prescription, of course, was for clomid. I had never heard of clomid, I didn't I know what it was or what it did. When I got home and told my husband that I had a prescription from the doctor that might help us get pregnant, my husband asked me if it would increase our chances of twins. I remember telling him that I didn't know, and I remember thinking to myself "Duh! It probably does!" At that point, I started doing my own research.

It's entirely possible that if my husband hadn't said anything that I would have continued being as ignorant as the author of the Elle article. But as soon as I started doing my own research, I started questioning everything. Clomid was supposed to be for women who didn't ovulate (or so I read), so why was I being prescribed this when I seemed to be ovulating fine? I also read something that said that clomid can cause cysts, and cautioned against taking the medication without being monitored by ultrasound throughout your cycle. I had previously had two cysts discovered during regular check ups (with a different OB/GYN), and so I began to worry about taking this drug for multiple cycles without being monitored. I actually called my doctor and expressed this worry, told him about my history of cysts, and he dismissed it immediately. But I didn't trust him any longer and after just one unmonitored clomid cycle, where I had a lot of pain and discomfort around ovulation, I decided to move on to an RE right away.

And I haven't trusted doctors since, because now I don't believe anything they tell me! (Kidding! I totally believe them, but only when they say things like "I don't know how much that costs, you'll have to talk to our financial department.")

Speaking of financial departments, I also wonder, if this was all being paid for by my insurance, as it was in the case of the author of the Elle article, would I have a more relaxed attitude? Because as it is, a big motivator for me to be my own advocate is the very real financial risk that my husband and I are agreeing to by undergoing an incredibly expensive treatment (IVF) that only has a 44% success rate (at our clinic, for my age group), and of course the multiple not-quite-as-expensive-but-still-more-expensive-than-an -iPad procedures that we underwent that only had 10-20% chances of success (IUI).

So did her insurance coverage have some influence on her relative ignorance?

I guess it's just hard for me to understand how someone could enter into IF treatments so carelessly. But, at the same time, it only took her one IUI to get pregnant, so it's not like she ever got to the point where she felt she needed to step up and take matters into her own hands.

But here's where I end up: whether the patient is informed and aware of the risks or not, IF treatments increase the rate of multiples. And as such, there are many many women who are finding themselves in the same situation as the author of this article, having to make a heartbreaking decision (though more likely they are pregnant with 3 or more, not just with twins). And until the precision of IF treatments is improved, or the underlying causes of IF are treated rather than just "worked around," women will continue to be faced with the decision to reduce, after working so hard to get pregnant in the first place.


  1. A very interesting perspective. I know that I tend to be on the over informed side of the equation. First I had a friend before we started TTC who was very open about her struggles with IF, so I knew some of the jargon. And, I was looking for support early on (3 months TTC) and stumbled into an online forum where I saw women using all of the various methods and having all sorts of results. And, I read lots and lots of books. So, by the time I went to the doctor, I knew what was going on. But, that's the kind of thing I tend to do in general...I overeducate. I've never really thought about the people on the other side of the equation who don't seek out info, go it alone and never question their doctors. But, you're right, there are obviously a lot of people out there who do. I've heard many stories of ignorant OBs just handing out Clomid like it was candy with no explanation.

    This definitely makes me think. I forget sometimes that there are IFers out there who aren't obsessed with the online IF community!!!

  2. I am definitely over-informed and question my doctors pretty regularly. I think it is sad that so many people just blindly follow their doctor's orders- sure they went to med school and we didn't, but we are with our bodies 24/7, and they are with us 10 minutes here and there.

    I have a friend who had insurance coverage for IUI/IVF, and while she was pretty informed, she was also way more relaxed about it. She didn't have to fork over $10k, so while she still had the emotional "cost", I don't think it's anything compared to the "rest" of us who have to save for a long time to be able to even try it. Not to mention the people who have coverage for THREE cycles- give me a break, they should be complaining about NOTHING!!

  3. I am SO GRATEFUL to live in a state/work for a big enough company that I qualify for state-mandated infertility coverage. Every single time I order meds, go in for bloodwork and ultrasounds, I feel fortunate with every cell in my being that a major portion of my IF cost is covered. But, with all due respect to the previous commenters and your Q in this post Jane, does it make me disinterested or careless about my treatment? NFW!!!!!!!!!

    I read this full Elle story and it really made my blood boil. At both RE clinics I've worked with informing the patient about the risk of multiples is a HUGE deal. Like one-hour consult and then sign paperwork confirming your understanding of the risks. And even if this writer's doctor did NOT inform her about the risks, she could read the freaking instructions for Gonal-F and immediately see multiples are more likely when you take the drug. I have to wonder if this writer/the mag has blurred and exaggerated details for a more dramatic story.

    Jane, I think you hit the nail on the head when you said that we bloggies are on one end of the spectrum. While it's totally insane to me that someone could go through this process without investing their mind, heart, soul and body 110% in it, this mag article shows it happens. I come across it daily as I google stuff related to my treatment and wind up on message boards with clueless women taking the same drugs I am. It's....just not how we bloggies are wired.

    Unfortunately the mag perpetuates a lot of stigma and misunderstanding about infertility.

  4. Thanks for sharing this. I read the article and couldn't believe the ignorance of the woman. But I do think some of the blame has to fall on the RE, right? What RE does an injectible/IUI and doesn't warn about the risk of multiples? The author of the article sounds like a complete moron, though. I'm not sure if it has to do with the insurance issue or the fact that her first child came so easily.
    Anyway, thanks for your commentary.

  5. I think you hit the nail on the head about the informed vs. poorly informed. Those of us who have been forced to extend our stay on this desert island tend to know an awful lot about how things work. And it's slightly galling when someone who has had a very short stay (which is not to diminish the pain of that stay) publishes something that misses the mark entirely.

  6. i can't read this article bc i can only imagine how pissed it would make me, and i'm trying to keep my emotions in check right now.

    re: your comment. don't second guess your doctor! you'll do great, just be really vocal if something is bothering you. if you have anxiety during the cycle and think something is wrong or just not quite right, say something. god knows, we're paying enough money that if we have ANY concerns, our docs should listen to us. sending positive vibes your way :o)