What to Expect when You’re STILL Not Expecting – Preparing for Your First Appointment with a Reproductive Endocrinologist

So you’ve been trying to get knocked up the old fashioned way for 12 months, and still no nugget in the oven. You’ve had a quiet, nagging feeling for a while now… you’ve been wondering if something is wrong. You think it might be time to see a specialist, and you feel nervous and uneasy. You are who I write to today.

I am writing to you because when you do sit down with a Reproductive Endocrinologist (RE) for the first time, I don’t want you to be as painfully unprepared as I was. I knew literally nothing about infertility.  And back then, I thought we were the only ones struggling. Heck, I didn’t even know there was such a thing as an infertility blog. I didn’t even know WHAT to google. I felt alone and isolated. I don’t want you to get blindsided like I did. It was awful.

I hope that this information is useful to you, and provides you some measure of comfort in this difficult time. Here are some things I suggest considering before your first appointment with your RE.

Picking a good fertility clinic and RE

This is something I didn’t even know to think about before we met with our RE. Here is a list of some things that I suggest considering when choosing your clinic.

  1. The clinic’s success rate

The Center for Disease Control tracks this stuff, so you can check out their website. You can search by state to see the available clinics near you, and their success rates. This might not track all of the information you are looking for. For example, the only stats that the CDC seem to track are those for Assisted Reproductive Technologies (ART), which is basically just in vitro fertilization (IVF) – so other, less invasive fertility treatments (such as intrauterine insemination (IUI)) are not tracked here. Even so, this is worth checking out and should at least get you started.

    2. Picking a good Reproductive Endocrinologist (RE) within the practice

This is another thing that did not occur to me prior to our initial appointment. All I knew was that I wanted a female RE. One thing I wish I had done is to research this particular “service” like I do every other damn thing I buy or do – read the stinking Yelp reviews. Yes, people review not only the practice, but the specific doctors. While this is not a sure fire way to find a good RE, at least it provides a good starting point.

3. Insurance coverage

This aspect of the decision making process might end up being dispositive. If you are fortunate enough to have health insurance that will cover any or all of your testing/treatment, your insurance company might only work with one clinic in your area. If that’s the case for you (as it was for us), that might make the decision for you. Just do your best to pick a good RE within the covered practice – and be grateful that your insurance is helping at all. So many insurance companies/workplaces do not.

Cost

Fertility treatment is expensive, and many insurance companies don’t cover it. You need to brace yourself for this. The cost will depend greatly upon your and your partner’s diagnosis. In our case, there are three separate “phases,” each with a different associated cost:

  1. Testing – I’ll get more into the specifics of what the “testing” phase entails below, but in my observation, even insurance companies that do NOT cover any kind of treatment might cover the testing. Every little bit helps.
  2. IUI – this is a less invasive fertility treatment. Depending upon your diagnosis, your RE might think it’s worth trying IUI before moving into the more expensive and more invasive IVF. Some insurance companies that do not cover IVF do seem to cover IUI, likely because it’s way less expensive and also way less controversial. (It runs about $1800 per cycle at our clinic, plus medication.)
  3. IVF – this is the crown jewel of fertility treatment. It is also the most invasive, expensive, and controversial treatment. The average cost of one cycle of IVF is $12,000 nationally, plus between $3000-$5000 for medication. There are other potentially expensive procedures/tests that your RE might advise such as ICSI or PGD.

Timing

One of the most surprising things about our first appointment with our RE was the timing of the process. By the time we finally went to the RE, we’d been off of birth control for almost 3 years because it took me a long time to acknowledge that there might be a real problem. Then, of course, it takes forever to get an appointment with the RE. My point is, that by the time you get in to see the RE, you’re freaking ready to get started. You’ve been waiting a long time, and you’re over it and just want to get a baby in your belly! 🙂

Maybe I’m the only one, but I thought it would be a pretty quick process. I thought that we’d have our initial appointment, I’d pretty much start IVF on my next cycle, and we’d be parents within 1 year.

Look, maybe that happens for some people, but that was not my experience or anyone I know.

The main holdups you’ll likely have to deal with after your initial RE appointment are (1) getting clearance from your insurance provider, and (2) getting through all of the testing. (More on the latter below.) Look, I know it’s frustrating because you just want to get started, but I would humbly suggest trying to view the testing process as just a means by which you will obtain useful information. Your doctors want to get you knocked up ASAP, and they are requiring these tests (or at least they SHOULD be) because they want to figure out what’s going on and which treatments have the best likelihood of making you a mother or father. I know when you read that last sentence you might be thinking, “Duh!” but I’m writing it anyway in case there comes a time for you, as there did for me, when you are just sick of waiting and want to try something, anything. Try your best to hang in there, just a little while longer. Everyone wants to see you succeed!

Female Testing

Before you get started with any kind of treatment, your RE will (hopefully) set you up for some tests. Like all medical testing, this will help the doc figure out what is wrong, and how to help. There are 3 kinds of basic tests (though I assume that if the doc finds something unusual, s/he might order some more specialized tests). My understanding is that these baseline tests screen for the most common causes of infertility.

If you’re pretty motivated to get this all done, you could finish all of your testing in a couple of weeks. (It took me months, but that had nothing to do with the clinic. I’ll explain more in the next section.)  If your clinic is anything like mine, you’ll have to go in two different days, for three total tests.

Here are the diagnostic tests that I think most REs require before developing a treatment plan:

DAY 3 TESTING (Day 3 of your cycle)

  • Ultrasound – Also on Day 3, your clinic will likely want to conduct a trans-vaginal ultrasound to check out your ovaries and your uterus for structural abnormalities. This is awkward, but not painful. (And by the time you’re in treatment and do it fifty-eleven-million times, it gets much less awkward.)
  • Blood testing
    1. hormonal testing – I don’t understand all of the science behind this, but even with an very basic understanding of biology, I know that hormones play a hugely important role in conceiving a baby. Your RE will order labs to see if you have any hormonal imbalances that might be affecting your fertility.
    2. ovarian reserve testing – By testing for certain specific hormones, your RE will be able to determine what’s up with your egg supply. (Cool, right?!)

ADDITIONAL BLOOD TESTING

  1. Health panel/STIs – some clinics (like mine) also require a full general health/STI panel for both partners. They might or night not do it in house (my clinic usually makes you go over to LabCorps, but since I’m so terrified of needles, they helped me out by doing it at the same time, in house.) This test doesn’t need to be done at a certain time, but if your clinic will do it in house for you with the day 3 blood work, that’s great!
  2. Genetic Screening – You and your partner might also elect to do genetic screening. This can give you a heads up for any potential genetic issues. This can be helpful in deciding whether IUI or IVF would be the best place to start for you because, if you have a high liklihood of passing on certain genetic issues, your RE might advise that you go straight to IVF (when you otherwise could have started with IUI) so that the embryos could be tested for that particular issue. Like the health panel/STI panel, this test does not need to be done at a certain time.

PRO TIP FOR NEEDLE-PHOBES: If you, like me, are extremely needle phobic, first of all, let me tell you that YOU CAN DO THIS. Also, I’ve figured out a couple of things that make this process easier for me.

First, at your meeting with your RE, ask if there is a particular phlebotomist that is really good with needle phobic people. You are not the first and won’t be the last that they have dealt with, so they will likely have some suggestions, or will be able to find out and get back to you.

Second, and you probably already knew this, you can ask to lay down during the “scary part” (blood draw). At my clinic, they put me in the same room that I’ll have my ultrasound in, and one of the wonderful flabotomists comes in and deals with me there. I never see anything, and it makes the process suck way less.

Third, ask for a hot pack. They probably have them, and if you put it on your arm a couple of minutes before they do their thing, it makes the process a lot easier. (I appreciate my amazing friend W for this advice!)

Fourth, this is a new thing that I recently realized, and it is really helpful for me. Ask to speak to the phlebotomist for a minute or two before she does her thing. For me, this has made a world of difference, to just spend a moment to connect at a human level before turning over my arm for this terrifying thing to happen. I have ended up getting quite attached to my phlebotomist over the past two years – Kelly, Nicci, Jennifer, and Sara. They are all so dear to N and me, and without their compassion and humanness, I’m not sure I could have gotten as far as I have. These ladies work the crappiest hours, around hormonal, frustrated women all day – in what appears to be a pretty thankless job. Meanwhile, without these four women, I would have had no chance of ever becoming a biological mother. Find your own Kelly, Nicci, Jennifer, or Sara. Believe me, it’ll make an enormous difference. 

HYSTEROSOLPINGOGRAM (HSG) – this is a radiology test done during the first half of your cycle that looks for blockages in your fallopian tubes. To you, it’ll feel pretty close to a pap that you happen to be getting x-rayed during. Lasts less than 10 minutes, start to finish.

PRO TIP: If at all possible, try to do this one in house. (This is actually a good thing for you to ask about at your initial RE appointment – whether they have the equipment to do your HSG in house.) The reason I suggest this is because, if this is done in house, you’ve got a person who specializes in this sort of thing. (As my Nurse practitioner said – she’s “in vaginas all day.”) This is great because then you basically have a gyno-type-person who’s gonna have a helper in the room to take x-rays while she quickly and masterfully does what she needs to do to your lady bits. (Versus a non-gyno-type-person radiology expert handling this process.) 

Also, if your clinic is like mine, they’ll have a special x-ray machine that they can move around. This is great because the alternative is that YOU will have to move around… while you’re getting this pap-like thing done. Not the worst thing in the world, I’m sure, but throughout this whole process, it’s nice when you can find a way to lessen your discomfort.

Male Testing – Yeah… so your partner just needs bang out a quick sample for a semen analysis – In most cases, this is all the testing that the male partner needs to do. If any issues are detected, he will likely be referred to a Reproductive Urologist.

Doubts

Throughout this process, and definitely at the beginning, I had a lot of doubts. I thought that maybe we didn’t really need to go through all of the hollaballou of fertility testing and treatment. I figured the problem must have been that we had just been timing things incorrectly, or that we were just too stressed out in law school or during bar prep. I figured that since we had finished law school and passed the bar, I’d just get pregnant without medical intervention. I did not know anyone personally who had been through this (or, probably more accurately, I did not know anyone who had TOLD me). However, from what I understood about IVF (the only fertility treatment I had heard of) it’s a really, really big deal, and I just couldn’t imagine that we would need such a thing. We were young and healthy, for goodness sake! Everyone around us was having millions of babies every day, or at least that’s what my Facebook feed indicated.

Because I kept thinking “it would happen,” (and because of my paralyzing fear of needles) it took me MONTHS after our initial appointment with the RE to even go for the initial Day 3 testing. After having that hurdle cleared, I felt like some of the pressure was off, and thought we should at least wait until after we went on vacation, since, you know, we kept receiving the wise counsel that if we would “just relax” it would happen. (Don’t get me started.) We had planned a really special vacation that year we were going with N’s family to Greece to visit the island from which N’s great grandfather came. Also, it was our 8th anniversary. (since, you know, we thought we’d better do it THEN since we’d be unable to travel for the next few years on account of being new parents). I was supposed to get my period towards the beginning of the trip, but it didn’t come. I brought a grip of pregnancy tests, just in case, and they all read negative. You can set a watch (or a calendar I guess) on how accurate my cycles are, so I thought for sure I was pregnant. Then, about 5 hours into our 10 hour flight home, after getting the back of my chair kicked for about 4 of those hours by a giant greek man sitting behind me who was VERY UPSET that my husband “allowed me” to recline my chair, I got my period. When I exited the bathroom, I signaled to N to come over so I could tell him. And I just started sobbing, and he just held me, and we just stood there like idiots.

Even still, when we returned, it took me another 4 months to finally go get the 10-minute HSG done. I thought that maybe all of the benefits that “relaxing” was supposed to have on our fertility might take a few months to really manifest. Mostly, I was in denial. Denial, I am told, is the first stage of grief. And believe me when I tell you, you will grieve.

Around that time, I ended up making an amazing friend who used the wisdom she gained through her own struggles in this area to help me get my sh*t together. (She asked to remain anonymous, so in this and future posts, so I will call her W for Wisdom.) Prior to her learning about my struggle, we were more like acquaintances, but as soon as she found out what I was going through we were like:

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I hope you will make similar friendships! She has mentored and supported me through this process, and I can’t believe how lucky I am that our paths crossed. So just in case you are deep in denial like I was, and you have not yet met your own W, I’d like to share with you some of W’s wisdom.

She said that I am not one of those gals who can glance sideways at my partner and get pregnant without trying/on the first try/etc. I’m not a part of that group, and that’s okay. And I need to accept that I’m not part of that group because sitting over there in denial, with those people and insisting that I don’t have a problem, or that it will “just happen” is NOT going to make me a mother. But if I could instead get to a place of acceptance that I belong in this other group – a group where we need a little extra help to become bio parents – THAT is my best chance of getting to be a mom. While it’s true that no amount of wishing or hoping or denial made me fit in with the other group, I DO fit in here. I belong here, and the sooner I embrace that, the sooner I can get the help I need to achieve my dream of motherhood.

I hope you find your own W. If you’re stuck in denial, it’ll make your journey to acceptance a lot faster and easier. And even if you’re not stuck in denial (or after you accept your new situation), having your own W in your life will make this process feel manageable and much more hopeful.

5 thoughts on “What to Expect when You’re STILL Not Expecting – Preparing for Your First Appointment with a Reproductive Endocrinologist

  1. Em & Lyn says:

    Great summary! We ended up doing a lot of our testing through our insurance (not with the RE) to save money. But it was a pain in the rear to get the medical records transferred. We were very close to missing a cycle over these records! Eventually, we learned about a medical records location that takes walk-ins. Now, this is the only way I get medical records. Thanks for sharing your tips and insights! -Em

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