Author: femmephysicist

I’m not ovaryacting* — AMH is cool

~ femmephysicist ~ 4 Comments

In a previous post on what it takes to be an egg donor, I mentioned that the very first hurdle is an ‘AMH’ test. But what is AMH? It stands for Anti-Müllerian Hormone, and it measures a woman’s ovarian reserve. I’m not being sarcastic — I actually do think it’s pretty cool. In fact, I was planning on doing a whole post on AMH, with lots of cool graphs showing it’s mean and 90th percentile values as a function of age, etc.

And then I realized that nobody wants to read that.

It’s fine! I’m not offended. I probably wouldn’t read a blog post with graphs related to your specific medical condition either. No offense.

But 1 in 8 women struggle with infertility. Sure — there are many other factors which also affect fertility — but low ovarian reserve can be a major factor for some of those women, and it’s also something that ALL women will face at some point in their lives (just hopefully after they’re done having kids).

So instead of bombarding you with graphs, here are three simple facts about AMH:

  1. It measures both the quantity and quality of follicles left in one’s ovaries.
  2. It’s typically around 3 (ignoring the ng/ml units) for women under 30, but it falls sharply toward zero between 30-50 years.
  3. It’s much more stable over the course of a monthly cycle than the other hormones that can probe ovarian reserve, making it a more reliable tracer.

I’m not a (medical) doctor, but I do wonder why — if this simple blood test is so powerful — it’s not something that is typically done earlier. It took me visiting three different fertility clinics in three different countries before mine was finally tested. And lo-and-behold, it was vanishingly small. Like, over an order of magnitude lower than average.

Hence the ovarian failure diagnosis. Again, this is something every woman eventually goes through. Women with premature ovarian failure (like me) just happen to be a decade or two earlier than most.

What is the AMH requirement for donors?

In Belgium, we were told that our egg donor had to have an AMH level between 2-6, where the high end of the range puts those (apparently) very fertile women at risk for additional complications. Marie’s test result came back at 2.16. Within range!

At first, I think Marie was a bit disappointed that her level wasn’t higher. (Marie is an overachiever — another trait we share). But according to the graphs I already agreed not to bore you with, she’s actually above average for her age. Her level is also ~15x higher than mine, which sounds pretty darn good to me.

So what are the odds of this donation cycle actually working? Well, for women with an AMH level <0.5 (like mine), a (normal) IVF cycle will only make it to embryo transfer 1/3 of the time, and those embryos have an even smaller chance than normal of sticking. The good news is that with an AMH level >2 (like Marie has), studies suggest that an IVF cycle will result in an embryo transfer 99% of the time.

Of course, having an embryo to transfer is a necessary — but not sufficient — step toward a full-blown pregnancy. The exact probability at that stage depends on many factors, including number of embryos transferred, embryo quality, and whether it was a 3- or 5-day transfer. More on that to come.

In summary (TL;DR), Marie’s AMH is above average for her age, so that’s about the best we can hope for. Also, if you are a woman struggling to conceive, ask your doctor to check your AMH.

Reference: For more fun facts about AMH, see IVF1

*The title was borrowed from justovaryacting.com

A passport & a plan

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When my friend, Marie, offered to donate her eggs to us, I knew that the timing would be critical. There’s a strict sequence of events that must be followed for egg donations, starting with the hormone test, then the STD/genetic tests, then the in-person screenings with the geneticist/psychologist/President of the EU (maybe not that last one?…it’s all a bit confusing…), followed by a ‘try-cycle’ to see how my body responds to the new drugs, and finally the actual donation cycle itself. One of the genetics tests (the chromosome analysis) can take up to three months to get back, and the results have to be in before they’ll let me even start the ‘try-cycle’. To make things more complicated, Marie lives across a fairly large ocean, and we’re trying to get this all done over her summer teaching break, which starts soon and ends in August!

I was guessing the chromosome analysis might be something that Marie could get done slightly faster in the US, since privatized healthcare = more expensive = better customer service. Sure enough, after about a zillion phone calls, multiple in-person visits, and an appointment with a very sympathetic doctor, Marie managed to get a lab order for the test to be done there, and she was told it’d only take two weeks(!) This sounds suspiciously short, so we’re still not completely sure this is the right test — due partly to some translation issues with the original (Dutch) order from Belgium, but mostly just to how medical protocols don’t necessarily cross international borders. When Marie asked for the technical reason behind the surprisingly large timescale discrepancy between the US and Belgium, the secretary helpfully responded <cue strong southern accent>: “Well, that’s a different country.”

The next logistical hurdle was scheduling the in-person screenings with the geneticist/psychologist/Dalai Lama. The earliest appointments available weren’t until July, which would delay the donation cycle itself until at least September. Luckily, I happened to be in Belgium at the time for my last ‘natural’ IVF cycle, and the egg donation nurse was kind enough to see me without a pre-scheduled appointment. She took pity on our predicament, and she managed to convince all the various doctors/world leaders to see us on a much shorter timescale (“Her donor is coming from America.”) I left her office with six back-to-back appointments scheduled for this coming 16 May, and a prayer that Marie would actually be available.

Marie was available, luckily, as was her husband, who also has to come for the screenings. (I really wish I could go back and tell my 21-year-old self that it would eventually take four adults, a team of doctors, and multiple international flights to get me pregnant.) Marie checked that their passports weren’t expired, and we bought the round-trip tickets for their whirlwind 2-night trip to Amsterdam. What she didn’t notice until several days later was the name on the passport…her maiden name. What followed were a bunch of frantic texts referencing travel.state.gov and the expedited passport renewal section.

All of this is to say that we currently have a plan, and hopefully in 8-10 working days, we will also have a passport.

Thanks

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The response to this blog has been overwhelming, so I just wanted to take a moment and thank everyone for reading it.

I know that for many of you, reading a blog about infertility is not exactly how you’d normally choose to spend your leisure time. Then again, I never thought I’d be writing a blog about infertility, and yet here we are…

For those of you who don’t know our donor, Marie, I want you to know that she’s totally on board with me writing about all of this. She even gave me the push to finally start it. I’d been thinking about starting a blog for a while, but until recently, it would have been all too doom-and-gloom. Obviously we’re still grieving that ‘natural’ IVF didn’t work out for us, but we’re also hopeful that this new path — egg donation — will be more successful. After all, Marie had both her kids on the first try, so her eggs are clearly top-quality. (If you could buy them at the grocery store, they would be those expensive cage-free organic ones.)

Just to be clear, Marie and I are also both chronic over-sharers, which Marie calls a ‘personality flaw’ and I call a ‘character asset’.

I also want to be clear that I don’t think I’m the first person in the world who has ever had this idea. When I told a (similarly fertility-challenged) friend about the blog, she said “Great, I’ll add it to my Saturday morning infertility reading list”, and she wasn’t even being sarcastic. There are many other great infertility blogs already out there written by fellow ‘IVF warriors’, like The Infertility Voice, Life Without Baby, Dreaming of Diapers, and (my personal favorite for best title) The Impregnable Woman.

There’s also a ‘National Infertility Awareness Week’, which, by coincidence, was this week. #NIAW

I’m really hoping this blog will be a short-lived pursuit, only necessary to keep our family/friends in the loop during this (last??) crazy leg of the journey. But I’m also a scientist — I understand the statistics — and I fully understand that it very well may not be. So thank you again for reading & following — your support means the world to us.

What does it take to be an egg donor?

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The requirements for egg donors are different everywhere, so I can only talk about what it takes at the hospital where we’re being treated in Belgium. After a bit of research, some of the criteria seem to be more-or-less universal (e.g., no family history of severe hereditary diseases), while others (e.g., age limit) will depend on the specific country/clinic.

The first thing to know is that there are two types of donation:

  1. Direct: where you donate eggs directly to someone you know, or
  2. Anonymous: where you donate eggs to an ‘egg bank’.

Here in Belgium, the egg bank is only available to Belgian citizens (due to a shortage of donors). For us, that meant that we had to find our own donor. However, that donor could choose to either donate directly to us, or they could donate anonymously to the egg bank, which would then give us ‘credit’ to use the egg bank anonymously.

Both options appeal to different people for different reasons. Some donors may find it psychologically difficult to see their genes being raised in another family, and they may then prefer anonymous donation. On the other hand, some donors may prefer to donate directly to their friends/family. We left it up to our donor, Marie, who has chosen the latter (direct donation). Obviously we’re still sad we can’t just use my own eggs (as we both happen to think I’m a pretty neat person), but given the circumstances, we would have been happy with either choice. And since we also think Marie is a pretty neat person, we feel we’ve won the egg donation lottery (if it all works, of course).

Before the donation can occur, however, the prospective donor must meet a number of criteria and test negative for about a dozen diseases. Though these are not strict rules for direct donation, the clinic strongly advises that the donor be under 37 years old, that they have had children, and that they not desire more (so they won’t regret handing over some of their potentially fertile eggs). Maybe it’s because of the circles we run in (academics and/or other expats), but finding a donor that met all of these criteria was extremely difficult for us. Before Marie volunteered, we had basically given up hope!

If the prospective donor meets these first criteria, then the next hurdle is a hormone test. There’s a pretty cool blood test they can do nowadays (‘AMH’) that tells you about your ovarian reserve. Obviously, there’s no point in going through the whole process if the donor is also low on eggs. Luckily, Marie already passed this with flying colors.

Then come the dozen-or-so tests for STDs and genetic diseases, including a chromosome analysis, as we’re apparently attempting to create a genetically perfect, award-winning being. These tests can be quite pricey for the hopeful couple, and do not seem to be covered by our Dutch insurance (still a lot cheaper than in the US, though!) They can also take up to three months to get the results back, and should thus be done as early as possible.

Next are the in-person screenings with a geneticist, a psychologist, and the coordinating nurse. Here, they create a detailed family tree for the donor, attempting to suss out any hereditary illnesses, and to assess the psychological fitness of the donor. Only if the donor passes ALL of these hurdles can the donation itself proceed (which itself is a multi-week process including hormone injections, and ending with a surgery — more on all this later).

I list all of these steps not to scare away potential donors, but rather to highlight how difficult it can be to find someone who is both willing and able. Particularly in countries where donors aren’t allowed to be paid (like here in Belgium), this can lead to a shortage of donors, making anyone who is willing/able that much more valuable. We’re grateful that Marie is willing to go through all this for us. She had her blood test yesterday for the STDs and chromosome analysis, so now we sit back and wait for the lab results!

An obituary for my fertility

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Ok, I admit that sounds a bit overly dramatic…

But before we get to the hopeful donor egg IVF stuff, I thought we should just get this out of the way. The first post summarized everything we’ve gone through in the last 4 1/2 years (and particularly the last year) in only a few paragraphs, which really doesn’t do it justice. While teaching my first university course for the first time, I was also learning that I would very likely never have biological children.

It’s not to say that I didn’t spend multiple afternoons crying in my office, but I’m pretty proud of at least getting through it — and what I managed to accomplish in the meantime. The end of one’s fertility is a difficult time for women of any age — a part of you has died. It’s particularly difficult for women with premature ovarian failure (POF) because it’s so unexpectedly early. I never wanted to be a young mother, but we thought 31 was still young enough. Part of what makes it so hard is accepting that if we had just made different choices — started trying when I was 21 instead of 31 — we probably could have had children.

Another thing that makes it hard is the social taboo that surrounds any discussions about infertility. There are several times when my husband or I have brought it up to friends and been met with uncomfortable silence. Then we end up feeling bad for making them uncomfortable. Many people go through fertility struggles, and just like mental health, I think it is something that should be acknowledged and discussed more openly in our society. If this blog helps even one other person cope with their own struggle, or inspires even one person to donate eggs, then it’s 100% worth it.

The final thing that makes it hard is the lack of understanding from others. One thing you hear a lot is “Well, you can just adopt, right?” Of course if we managed to adopt a child (which is actually surprisingly difficult — more on that later), we would love it the exact same amount, just as we will with any child conceived if our donor egg cycle is successful. But it doesn’t mean we’re not allowed to grieve my fertility, and it certainly doesn’t make any of this any easier.

With all this said, we do understand that it could be far worse — we still have our health (otherwise), and we still have each other (although my husband might question the benefit of the latter…) We also have amazing friends, as this whole ordeal has taught us. Having Marie’s offer to donate eggs on the table is the main thing that got me through the last failed IVF cycle without becoming a chain-smoking alcoholic. (That, and I hate how cigarettes smell, so maybe that’s the wrong example). Now we just have to wait and hope that Marie aces all of her genetics tests, and that big feet aren’t hereditary!*

*Marie has extremely big feet. This was her joke, not mine 🙂

 

Announcement: We’re (not) pregnant!

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Many people don’t talk openly about their fertility struggles. For whatever reason — shame in not being able to get pregnant, not wanting to make others uncomfortable, or because it’s simply too painful — there are countless couples who keep their struggles to themselves. Well, we’ve decided to do the opposite and broadcast our story all over the internet!*

(*Technically only our friends will probably ever read this, but the point is that it’s out there.)

Some of you may already know what we’ve been going through recently. For those who don’t, my husband and I have been trying to become pregnant for over 4 1/2 years, with no luck. In March 2017, at the age of 34, I saw a new gynecologist here in Holland who was finally able to explain why: I have a condition known as ‘premature ovarian failure’ (POF), which is basically early menopause.

None of us had been expecting this news, and I think the doctor even used the word ‘shocked’ (which is a word I feel doctors should generally avoid using? But anyway…) Basically, my hormone levels are those of a woman 20 years older than me. This has been a devastating diagnosis for both of us, as you can imagine, as we both always planned to have children, and I’ve always been (ironically, it seems?) somewhat obsessed with adorable pregnant women.

The gynecologist recommended we jump straight to in-vitro fertilization (IVF), rather than trying the usual steps like intra-uterine insemination (IUI) for other less severe types of infertility. Over the past year, we tried two cycles of IVF at our local hospital in Holland. Unfortunately, my condition makes me a ‘poor responder’, which means my ovaries don’t react to the injected stimulating hormones as they should. They ideally aim for ~15 or so follicles in an IVF cycle, each which may contain a sufficiently developed egg, in order to increase the chances that one will make it through all the stages (fertilization, development of an embryo, implantation) required for a viable pregnancy. In my first IVF cycle, in June 2017, I only grew a single follicle. Miraculously, it contained a mature egg that fertilized and grew into an embryo, but that embryo did not implant.

In my second cycle, they managed to retrieve three eggs, which all fertilized, but the embryos were very low quality, which is another side effect of my condition. The two that they put back in did not implant. Unfortunately, that was also the last time they were willing to try IVF on me at all, since my chances are so low.

IVF is great, but it’s not magic.

In January, my husband and I went to the highly regarded university hospital in Ghent, Belgium, for a second opinion. They confirmed my diagnosis, unfortunately, but they agreed to try IVF on me one more time with different/stronger drugs to at least “give us closure” (another fun phrase?) that there is no hope of getting pregnant with my eggs. We started our third and final cycle there in late March 2018, going back-and-forth several times from Holland, and I had the egg retrieval surgery in early April. They got two eggs, but only one fertilized. Unfortunately, it didn’t even make it to transfer (which — of course — I found out the Monday before a huge work deadline). Even knowing it was probably coming, the news was still devastating.

I will never have biological children.

We’ve been simultaneously looking into egg donor banks, as I naturally researched the hell out of POF and knew that donor eggs were probably our best/only option for getting pregnant, and possibly even becoming parents at all (but more on that later). Unfortunately, Holland doesn’t have a donor bank, and the one in Belgium is only open to Belgian citizens (due to a shortage of egg donors). This means we have to find our own donor. This is not as easy as it might sound, however (if it even sounds easy?) The donor should ideally be under 37, have had children, and not desire more. They have to submit themselves to a battery of hormone injections and an egg retrieval surgery. They need to be psychologically willing to donate their genes. Oh, and they would need to put their lives on hold and come to the Netherlands/Belgium for several weeks, as we are extremely fortunate that the costly IVF process is (partly) covered here by our insurance.

We drafted an email to our friends in January, but there really is no good way to be like “Hey, can you drop everything and come have surgery to give us your genetic blueprint?” It was too big a thing to ask, and even discounting psychological factors, we didn’t think it would logistically work. Plus, we didn’t want to alienate our friends, who we are counting on for support right now! In the end, we never sent the email.

Then two things happened. First, a (new!) Dutch friend — who had seen up close what we were going through — offered to donate her eggs to us. Unfortunately she didn’t meet all the criteria, but her unhesitant willingness was very moving and gave us hope.

Then, around the time we were learning that I wasn’t responding any better to our final IVF cycle, one of my best friends from high school (and bridesmaids), Marie, offered unprompted to donate her eggs to us. Miraculously, Marie meets all the criteria AND is willing and able to fly from the U.S. two separate times for a total of ~4 weeks away from her life/children. This news made our last failed cycle much easier to bear. It’s still not a done deal — she has to pass a dozen genetic and psychological assessments, because apparently we’re attempting (her words) to “win a prize” with this baby. But we’ve already bought the tickets for her and her husband, my grad school roommate (also one of my ‘bridesmen’) to fly out next month for the first six (no kidding) appointments. She also prompted me to start this blog, so our family and friends can follow along (& help support us!) during this whole crazy process.

That’s it for now, but look out for more updates as things progress. You can also follow this blog by clicking the “Follow” button on this page. Thanks for reading to the end, and until next time.

Allie (aka ‘The Bunless Oven’)