Where Do You Turn for Help?
March 10, 2012
© Sarah Preston Gorenstein
The obvious answer here is your OB, or reproductive endocrinologist, but what a lot of people new to infertility don’t realize is, sometimes your doctor is the last person you'll be able to reach for answers. The Q&A time is usually during your initial consult with your RE (utilize it!), but at that point you don't always know what to ask. And beyond that point, you don’t have all that much interaction with your doctor. It’s usually your doctor’s nurse you’re talking to when you have questions, for prescriptions, instructions for the medication you’re taking, the appropriate dose, the appropriate timing of injectable meds, everything. And, as I learned the hard way, having a very clear understanding of what you're taking and when is crucial to the success of each cycle. Crucial!
But what if these questions come up in the middle of the night? Where do you go for answers? What if you get sick, like I did, and you can’t get a hold of someone at the clinic right away? When I got sick going through IVF, my symptoms always worsened at night, after regular business hours, when it wasn’t always easy to get a hold of someone at the clinic. There’s always an on-call doctor, but when you’re desperate for answers, and feeling like crap, lying on your cold bathroom floor, hugging the toilet (pretty picture, isn't it?), waiting an hour to get a phone call back from the on-call doctor you don’t know who hasn’t been on your case isn’t always…well…helpful. And forget going to the ER—they'll likely know about as much as you do.
With a disease like infertility, it's the emotional side effects that are often worse than the physical ones.
So where do women go for answers? The Internet obviously! I was never one to Google every pregnancy symptom I had—I knew that would never ease my mind and, thankfully, I had a pretty easy pregnancy so there weren’t many times I was freaked out enough to turn to the Internet. And there are so many pregnancy books out there, whatever question I had could be answered by The Girlfriend’s Guide to Pregnancy or What to Expect When You’re Expecting, or the dozens of other pregnancy books loaned by friends who’d already been through it. And if the books couldn’t answer my questions, my friends could.
But where do you turn when you’re going through infertility? Lucky (for me) I know a lot of women who’ve been through what I’m going through—or something very similar—and I’ve had an outpouring of support since I started writing this blog and going public with my journey. But at 2 a.m., I can’t exactly call or email a friend and expect them to get back to me right away. And since everyone’s experience is different, and the meds affect everyone differently, what you’re feeling on a particular drug may not be what your friend is/was feeling. I did lean on a couple friends in the beginning, but as I got further into this unfortunately I far surpassed what even they experienced.
So, yes, the Internet is where I turn sometimes, with disappointing results. That’s one of the reasons I wanted to write this blog: I simply couldn’t find the right resources online to help me. (That boy holding the purple balloon in the pic is a great source of strength but he doesn't have all the answers.) Since infertility is an evolving science, if I do find a blog or article written a few years ago I never feel confident it's entirely up-to-date with the current research, and procedures doctors are doing right now. Plus, what tends to happen—naturally—is as soon as someone gets pregnant they stop writing about trying to conceive. Makes sense.
I’ve hopped on some message boards to find solace in what I'm going through, but they’re more than a little frightening. For one: I have a hard time keeping up with the conversations since they’re held entirely in acronyms (which is why I started collecting a glossary of terms). And two: I find them a bit too clinical. The women know a great deal about infertility so if it’s a question about a medication’s side effect, or steps in a particular cycle (or the different types of protocols), the message boards can be very informative. Overwhelmingly so. But if you’re looking to relate on a more emotional level, they don't do it for me. In a nutshell: They kind of freak me out.
There are blogs like “A Little Pregnant” and "Stirrup Queens" that I’ve only recently been turned on to, which are great. Conceive and Resolve (The National Infertility Association) both offer sound clinical advice and the latest in infertility news and science, and are amazing resources. The website for the forthcoming film "My Future Baby" is also a good, timely source of info, with short videos of people's personal stories—I've spoken to Brigitte Mueller, the woman behind it, she's devoted herself to this disease (I'll be doing a Q&A with her in the coming months so stay tuned).
I know there are a lot more sites and blogs out there, but you have to dig to find the relevant ones that are still being kept up-to-date. I’d love to know where you turn for help online while going through infertility so I can compile a list of relevant blogs and sites here for easy reference.
What are some of your go-to places online to find strength, companionship, advice (clinical or emotional), or just plain sanity, to help you through this difficult time? Feel free to include the message boards you frequent, too.