All systems go…with one hiccup

In my last post, I talked about how our friend Marie had been approved as our egg donor, but contingent on three pending genetic tests. Those test results weren’t expected until today (25 June), which was basically the last possible moment in order to keep our timeline for donor egg in-vitro fertilization (IVF) on track. Well, our Belgian egg donation nurse, Bernadette, worked her magic again, and we got the test results back already on Friday 22 June (voila!). The same day, I had a blood test, followed by an ultrasound on Saturday to make sure I’m ready for the first injection. All of the tests came back clear, which means we are officially all-systems-go for a July 2018 egg donation.

I know that probably sounds like something in this process actually went smoothly. But you should also know by now that I enjoy (according to my husband) “doing everything the hard way”. This is why I got my PhD in a competitive field, and why I voluntarily moved to a foreign country…twice. This is also why I decided to accept a work invitation to speak at a conference in the US this week, right in the middle of this whole process.

It shouldn’t have mattered, or at least that’s what I thought. I knew I needed to have an injection during the week I was away, but I’ve already given myself at least 50 injections over the course of our three ‘normal’ (non-donor-egg) IVF cycles. I knew I could get a doctor’s note to fly with the medication and needles, and I figured I could just inject myself with a large dose of hormones in the morning and then go chair the plenary session like the modern working woman I am. Easy-peasy, right?

Wrong.

Literally the day after booking my flights (which I’d already waited til the last minute to do), I called Bernadette about picking up my injection, and she informed me that it was not necessary to pick it up, because this particular injection had to be done by my doctor…in Belgium. Apparently this injection was intra-muscular — not subcutaneous* — and it was very easy to do it wrong. She said it was ok if I wanted to do it myself, but that I had to agree to accept the consequences if I did it incorrectly. And the consequence was a canceled IVF cycle.

To go or not to go?

A mild panic ensued, where I briefly considered canceling my whole trip. That probably sounds like the obvious solution, but I’ve already canceled so many work trips for IVF, and I really didn’t want to cancel yet another. Then I considered trying to call a doctor’s office in the US city I was visiting, but I had had previous bad experiences with medical care crossing international borders. I highly doubted that if I called up a random US doctor, they would agree to inject me with some foreign (literally, including the box and directions) medicine.

Next I called up a Dutch doctor friend, who offered to help me practice stabbing the MASSIVE needle into my thigh before I left, but I was still worried I’d mess it up by not stabbing it in far enough, or too far (…is that a thing?) Then another friend had a suggestion: did I know anyone attending the conference who was a doctor? (Technically we’re all doctors, but not the useful kind…)

Luckily, I remembered that one of my fellow conference attendees is originally from the city I’ll be visiting. I emailed to explain my predicament and ask if she knew any doctors. Lo-and-behold, her childhood best friend is a doctor, and she still lives in the area. After some more emailing back and forth, this friend-of-a-friend agreed to help me!

So this is how it has come about that tomorrow, after I’m done chairing my session, I will take a taxi to the home of a woman I’ve never met before and have her stab me with a very large needle.

*FYI, ‘Intra-muscular’ means the medication needs to be injected into a muscle rather than just under the skin. There was actually a whole separate confusion over whether this was still the case if I got the prescription filled in the Netherlands (where I live) rather than Belgium, as the medication is apparently slightly different (because again…hardest way possible!). The box actually said it could be done both ways, but confusingly, there was no subcutaneous needle included in the package. After multiple phone calls to various medical professionals by my (invaluable) Dutch doctor friend — including to the actual manufacturer — we eventually decided it was a safer bet just to do it intramuscularly. (On a related note, I recommend everyone befriend a medical doctor.)

The hardest part of IVF

The hardest part of going through in-vitro fertilization (IVF) isn’t the physical part. It isn’t the daily injections that you have to give yourself, or having blood drawn every couple of days. It isn’t the sometimes severe abdominal bloating from the multiple grape-size follicles growing in your ovaries (if you’re lucky enough to grow multiple follicles). And it isn’t even the surgery to retrieve the eggs from the follicles, which involves an IV (I hate IVs) and a fairly substantial needle puncturing your uterine wall from the inside (you’re welcome for that visual).

It’s the waiting. And waiting…and waiting.

In the special case of donor egg IVF, there’s additional waiting before you can even start the process. We’re still waiting to hear if our egg donor, Marie, passed her genetic tests. In the meantime, we got special permission from our favorite Belgian egg donation nurse, Bernadette (voilĂ !), to do my test-run with the new hormones (the so-called ‘try-cycle‘) before actually getting the results. Luckily, I passed that test on the first try — I think perhaps the first thing that’s gone ‘right’ in this whole process…? I may not have any eggs, but I can still grow an endometrium LIKE A BOSS.

We got even more good news this week: our case was presented at the bi-monthly staff meeting, and Marie was approved as our egg donor! I wasn’t too worried about this part — as her in-person screening appointments didn’t seem to raise any red flags — but it’s still nice that it’s official. However, her approval is contingent on her genetic tests, which are still not back from the lab…

Why is this a problem? Well, because we’re trying to get the actual donation cycle done over Marie’s summer break, our timeline is rather tight. We have tentatively planned Marie’s first ultrasound for 9 July, which would get her back home before she starts teaching. We even bought the flights(!), though with cancellation insurance of course. But to make this timeline, I need to have an injection on 26 June that they will only give me if Marie’s genetic tests are ok. And can you guess when those test results are due back? On 27 June…exactly one day too late.

Apparently this process can’t be rushed, at least at our clinic. However, Bernadette worked her magic on the lab technicians and convinced them to send the results by 25 June — two days earlier. That means we should find out if this cycle is a ‘go’ in time, but only at the last possible minute. Because obviously this whole process isn’t suspenseful enough already.

That brings us back to the waiting. In the best case scenario, the test results will come back on 25 June, and Marie will be fully cleared as our donor. Then I can have my injection on 26 June, and Marie will fly out in early July with both her kids (who I like to think of as ‘Model A’ and ‘Model B’). We will all drive to Belgium on 9 July for her first ultrasound. If everything looks good there, then we can move on to the next of at least eight more distinct stages of waiting. Because that, my friends, is IVF in a nutshell.

What causes Premature Ovarian Failure?

Premature ovarian failure (POF) is a devastating diagnosis for the 1% of women it affects. In medical-speak, it’s a gynecological endocrine disease characterized by the exhaustion of ovarian follicles before the age of 40. In normal person-speak, it’s when your ovaries decide to throw in the towel and simply stop producing eggs.

Women with this disease have a very low chance of ever having biological children, even with the help of in-vitro fertilization (IVF). This is why, after my diagnosis at 34 — including three failed IVF attempts — we’re currently preparing to use donor eggs from my friend Marie. But how did I happen to win this infertility lottery in the first place? In other words, what actually causes premature ovarian failure?

The short answer is that medical professionals usually have no idea. The long answer is that there are a number of possible causes for the disease*. These include (but are not limited to):

  • Genetic disorders: Chromosomal defects from certain genetic disorders can cause POF. Examples include Fragile-X syndrome, where a woman’s X chromosomes are fragile and break, and Turner’s syndrome, where the second X chromosome is partially or completely missing. (Fragile-X syndrome is also one of the diseases that they screen for in potential egg donors.)

  • Cancer treatments: Common cancer treatments like chemotherapy and radiation therapy can damage the genetic material in cells, causing POF in cancer survivors. POF is already a terrible thing to face on its own, much less after battling cancer. If there’s any kernel of goodness hidden in there, it’s that this particular cause of POF is becoming more common as cancer survival rates increase.

  • Psychological stress: Studies have shown that psychological stress, like experiencing a trauma or chronic anxiety, can cause changes in reproductive endocrinology. This cause is difficult to identify if you’re trying to self-diagnose, particularly because POF itself can also cause anxiety, leading to a chicken-or-egg scenario where it’s difficult to tell what came first.

  • Autoimmune disease: In a small minority of cases, a woman may have an autoimmune disease that produces antibodies against her ovarian tissue. This can harm the follicle and permanently damage the eggs contained within. It’s not known what triggers such an immune response, but exposure to a virus is one possibility.

How often is the cause identified?

While the issues listed above are known to cause POF, the truth is that the vast majority of cases (90%) are idiopathic, which is a fancy way of saying that we have no freaking clue what causes it. This is also the case for me. It is estimated that 40% of cases are genetic, and with my mother’s history of Hashimoto’s (an autoimmune disease), and my grandmother’s thyroid issues (plus my recent hypothyroid diagnosis), I wonder if there isn’t some connection there. But while I can speculate all I want (and believe me — I do), I have also resigned myself to the fact that I will likely never know.

*Disclaimer: Please keep in mind that while I am a doctor, I’m not one of the medical variety. The information here comes from personal experience and hours of sleepless googling.

Our egg donation IVF test run

Back in April, my friend Marie volunteered to be our egg donor to help us try to get pregnant. Since then, she has undergone a battery of blood tests to check her hormone levels/rule out STDs/screen her for genetic diseases, and she and her husband flew over to Europe from the US in a whirlwind trip to have their in-person screenings. Assuming that she gets approved (which we’re still waiting to hear…), the actual egg donation IVF cycle still won’t happen until mid-July at the very earliest.

So why does it take so long? Well, unlike normal people who only have to get drunk to procreate (or so I’m told), there are about a gazillion steps we have to go through for this whole process, and we’re currently only on step #8,341 or so: the test cycle. Some clinics (including ours) require you to do a ‘try-cycle’ before the actual egg donation cycle to make sure that your body responds well to the drugs. “But wait…”, you’re probably thinking, “…Didn’t you already do three IVF cycles?” Yes. Yes I did. (#ivfwarrior). So why is it necessary for me to do another?

The thing is that an egg donation IVF cycle is very different from a ‘regular’ IVF cycle. In a regular (i.e. non-donation) cycle, you grow your own eggs within follicles in your ovaries, and that process itself is actually what stimulates your endometrium (aka uterine lining) to grow. In an egg donation cycle, nothing grows in your ovaries, because your donor is doing that part for you. In fact, they even give you medication to turn off your ovaries entirely, just to make sure that nothing jeopardizes the donation cycle. That means they need to give you other medication (estrogen, basically) to grow your endometrium. And that’s the part they want to test, because it’d be a huge bummer if your donor goes through all the work of producing eggs for you, and then your uterus isn’t in prime condition to receive one.

It’d be like: after years of getting the recipe wrong, the dough is finally ready, but you forgot to turn the oven on.

How often does the test cycle fail?

I asked our Belgian egg donation nurse, Bernadette, how often the egg donation test cycle shows issues, and she guesstimated about 40% of the time. They test this with a vaginal ultrasound to look at the thickness and structure of the endometrium after 12-14 days on the estrogen pills. If it’s not thick enough, or if it doesn’t show the desired ‘triple-line’ structure in the ultrasound, then you have to wait and test again, possibly with some changes to the medication. That obviously sets the schedule back even further.

I’ve been on the estrogen pills for 10 days now — three times a day — and I’ve scheduled my ultrasound for this coming Tuesday — right at the 12 day mark. We’re really hoping everything looks acceptable, because then we might still be able to do the real egg donation IVF cycle (mostly) over Marie’s summer teaching break. Then we can move on to steps #8,342–8,344 of the process: five days of another new medication for me; then waiting for my cycle to start; then (this one will surprise you) the very non-intuitive step of taking birth control pills. Because if we could just use our intuition to get pregnant, we wouldn’t be in this pickle!