Tag: lifestyle

When menopause strikes in your 30s

~ femmephysicist ~ 1 Comment

It’s funny: I’ve discussed everything from infertility grief to the intimate details of my uterine lining on this blog, and yet today’s topic — menopause — somehow feels like an even more taboo thing to discuss. Maybe it’s because — unlike an infertility journey — there’s no hope of a baby at the end.* And yet, in my case at least, the two journeys are inextricably connected.

Some readers may recall that the reason we used donor eggs to conceive our Miracle Baby (MB) was my premature ovarian failure (POF) diagnosis, which is sort of (but not exactly) like premature menopause. Effectively, this means that your ovaries stop releasing eggs, and your estrogen and progesterone levels plummet. In fact, when I was first diagnosed five years ago, I remember the gynecologist telling me that my hormone levels were that of a woman ‘twenty years older’, and that she was ‘shocked’ to see my results (I always did pride myself on making a strong impression…)

What you may not know is that infertility is only one side effect of POF. However, there are a number of other side effects, including ‘classical’ menopause symptoms like hot flashes, trouble sleeping, weight gain, and brain fog, but also more serious complications like increased risk of depression/anxiety, osteoporosis, heart disease, and neurodegenerative diseases like Alzheimer’s. Basically, your body is no longer making enough estrogen, and when this happens so unexpectedly early in life, this can have far-reaching consequences beyond just a lack of working ovaries. (Isn’t being a female just such a joy sometimes!)

These possible side effects of POF have been in the back of my mind since I was first diagnosed, but we were (understandably) more focused on addressing the whole having-children aspect. Once we managed that, I was under the impression that the fact that I’m still breastfeeding would somehow delay the onset of symptoms. However, recently I had the realization that I’m actually experiencing quite a few potentially related symptoms (including anxiety, hot flashes, and trouble sleeping), and from my subsequent googling, I learned that it is indeed possible to experience POF-related symptoms even while still breastfeeding.

With this all in mind, I scheduled a visit to the gynecologist a couple months ago. I specifically wanted to discuss 1) my current POF symptoms, 2) how concerned I should be about the more serious long-term consequences, and 3) whether I could start on hormone replacement therapy, particularly since I’m still breastfeeding, but also with an eye on possibly trying another embryo transfer in the not-so-distant future (more on that in a later post).

A retracted diagnosis

I’d somehow forgotten that the gynecologist was in the same department as our first IVF clinic, which probably should have raised some alarm bells. Instead, I sat in the waiting room for my turn, still convinced it’d be a quick and easy appointment.

It started badly right off the bat when the gynecologist who was seeing me didn’t seem to have any prior knowledge of my medical history despite being the same department that diagnosed me with POF already five years ago. Instead, the first thing she said was that they couldn’t necessarily diagnose me as having POF since I was still having occasional periods, and that hormone therapy was reserved for women who actually had POF and thus really needed it…

I sat there, dumbfounded. What exactly would they call my condition, then? Did they not have my old hormone levels in front of them?

I clarified my medical history, but then she decided to turn the conversation to the fact that I don’t use birth control. She warned me that I ‘still had a 5% chance’ of getting pregnant naturally as if I wouldn’t be THRILLED if that actually occurred. Now I was starting to get annoyed. I knew the statistic she was quoting was an average for *all* cases of POF, but I also had copious evidence that my case was more advanced (meaning an even lower chance). I was beginning to wish I’d brought my husband along for moral support.

Then she did an ultrasound (not seeming to understand it was approximately my 15-millionth) and was surprised when she couldn’t find my ovaries due to a lack of any follicles. (Was I surprised? Of course not.) This was about the point that I started crying, which she seemed to think was because this was all fresh news to me. I kid you not.

In reality, I was crying out of frustration. I had hormone issues severe enough to unequivocably fail out of own-egg (OE)IVF — and which were now causing a host of other symptoms — but which were apparently not ‘severe enough’ to warrant hormone therapy or even a definitive diagnosis? More importantly, by questioning my diagnosis, she had managed to invalidate in 5 minutes everything I went through the last ~8 years, which was really, REALLY hard.

Vindicated

Flash forward to two weeks later, when the gynecologist called for our follow-up telephone appointment. She sounded somber. My ears immediately perked up.

”I have the results of your recent bloodwork”, she said apologetically. She had the tone of someone attempting to delicately deliver bad news. “Unfortunately, it seems that your hormone levels are not consistent with a woman who is in menopause. They’re actually that of a woman who has already completed menopause.” She sounded somewhat in disbelief. “Your FSH is through the roof and your AMH is undetectable.” That’s right — I took her POF numbers and knocked them out of the park. She clearly expected me to be surprised. I was not.**

She said my POF was “unmistakable” and that I should start on hormone replacement therapy right away. I felt vindicated! She then referred me to an endocrinologist for a bone density scan to assess whether I already had significant bone density loss. (At that point, I still felt vindicated, though somewhat less triumphant than before…)

The good news is that the hormone replacement therapy she prescribed is safe to take while breastfeeding, and I can simply stop whenever we want to try another embryo transfer. The better news is that I’ve already noticed a significant decrease in my anxiety and hot flashes. (The not-as-good news is that the medication itself has some unpleasant side effects, but more on that in a later post.)

So in the end, I was right: I should be on hormone replacement therapy. Given all of the potential side effects of POF, I still can’t believe that some doctor along the line didn’t suggest this treatment for me earlier, but at least I’ve stumbled my way there now. And if there’s any lesson in all of this for those in similar shoes, it’s to always advocate for yourself.

xx

* Or maybe it’s because menopause is just so unpleasant. When you type ‘Why is menopause…’ into google, the first three suggestions are ‘Why is menopause so difficult?’, ‘Why is menopause bad?’, and (my personal favorite) ‘Why is menopause making me fat?’

** I’ve always been an overachiever, so I guess my POF is no different.

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Post-donor egg IVF cycle wisdom

~ femmephysicist ~ Leave a comment

Three weeks ago we found out that our 4th IVF attempt — and first attempt with donor eggs — had failed. In the week that followed, we had two different international visitors (from Australia and the UK!), which was a fun and well-timed distraction. Sadly, they eventually had to go back to their respective countries, and their departures also coincided with the arrival of a particularly unpleasant menstrual period (no doubt due to all the meds). As I lay on the couch with a hot bean bag on my crotch for the second day in a row, I finally had some time to reflect further on this last cycle.

Multiple people have commented on how quickly I was able to bounce back from this last failed attempt and focus on the the positives. I don’t want to give the false impression that any of this is easy, so I’ll tell you my secret why: it’s because the first three failed cycles were much, much harder. Those were the cycles where it became clear that we would never have children with my eggs…where people would tell me ‘it would happen eventually’, and I had to smile and nod, knowing they were wrong. Let’s all take a minute and be thankful that I wasn’t blogging yet back then, because it would have been one nonstop sob-fest.

That’s not to say that this recent cycle was all sunshine and lollipops. It was obviously hard too…but in a different way. As I was trying to figure out how to explain it, I got a nice message from fellow donor-egg-IVF mama Lauren of The Trying Times, who helped me put my finger on why.

The thing is, making the decision to use donor eggs is already a massive leap — it’s something that no one can really fully understand unless they’ve been through it. It’s a trauma that requires it’s own grieving process. After all, you’re giving up on a lifelong dream — what should have been a given for a heterosexual couple like us — of having kids that are half your partner and half you. When you do finally give up on your own chances and make that leap, you sort of feel like you’ve already paid your dues. Then when it still doesn’t work, it feels doubly unfair. It’s like, not only did you fail IVF with your own eggs, but now you have to go through the whole drawn-out process again with someone else’s.

The silver lining

It’s taken me a long time to find a silver lining in all this, but as I waited for the microwave to finish heating my crotch-warmer™️ for the fourth time in as many hours, it came to me: we can finally go on vacation.

You see, once we started the IVF phase of our 5-year (and counting) ‘journey’, it became a race against the clock to knock me up before my ovaries completely kicked the bucket. Even when we gave up on my own eggs, we jumped right into planning our donor egg cycle due to the timing of our egg donor Marie’s summer vacation. Between all of this and my busy work schedule, it means we haven’t had a ‘proper’ (i.e. >2 week, European-style) vacation in over two years. And of course, juggling all of this along with an uber-competitive career is exactly why I so desperately need a vacation.

Now that we’re using donor eggs, it totally changes the game. In particular, we’re fortunate in that there’s no evidence of any additional problems with my uterus or my husband’s sperm. Obviously I’d rather not wait ’til I’m in dentures to pop out a kid, but now when I close my eyes, I’m no longer terrorized by graphs of egg-quality nose-diving with age. If none of the embryos from Marie’s eggs work, our backup plan is to use an anonymous donor in Spain, where I’m sure we can find some fertile 22-year old who gets pregnant from merely being sneezed on. As a result, I feel a lot less pressure to make every month count, so we’ve decided to sit the next cycle out and finally take a long-overdue vacation.

Specifically, we’ll be heading to the south of France (near Bordeaux), and then Corfu, where I plan on lounging around various exotic beaches for hours on end. I’ll also be doing my best to avoid Facebook, where back-to-school photos are in full swing, and my mind can’t help but play the “Was that kid alive when we started trying” game. We’ll be going with our favorite travel buddy, the lovely Louise, who makes every trip about 10x more fun. I love our vacations with Louise — we’ve been dog-sledding in Norway, bathed elephants in Thailand, and have had countless other adventures in foreign lands that were made even more adventurous thanks to Louise’s unwavering faith in Google Maps (I’m looking at you, Cretan goat trail). I also acknowledge that we wouldn’t have gotten to take half these trips if we’d gotten pregnant when we originally wanted to. So I’m planning on enjoying the hell out of this next adventure, and we’ll wait and see what happens the month after.

What are the odds of this donor egg IVF cycle working?

~ femmephysicist ~ 2 Comments

Some people we’ve told about our current donor egg IVF attempt automatically assume that this cycle will work — that we will walk away with a baby. While we are certainly way more optimistic about this cycle than our previous three (non-donor-egg) cycles, unfortunately, the odds are still not 100%…not even close. So in the interest of managing everyone’s expectations, what are the odds of this donor egg IVF cycle working?

I won’t leave you in suspense: the answer is 25%.

Yep. 25%. Depressing, right?

Of course, the exact value will depend on the quality and quantity of eggs they get from our egg donor, Marie. But given her age and the number of eggs they aim for, we are going through all of this effort — multiple international flights, daily injections, disrupting four peoples’ work schedules, and spending thousands of euros — for a one-in-four shot. In other words, don’t get out your baby booty knitting pattern just yet.

So how is this value calculated? As I said above, the two main factors are egg quality and egg quantity. Egg quality decreases with age, where the AMH level can give a rough indication. Marie has a fairly normal AMH level for her age (even a bit above average), but she is still 36. So as high-quality as her eggs may be, we can’t expect them to compare with those of an 18-year-old.

By egg quantity, I mean the number of eggs that Marie grows during the stimulation cycle. I had previously read that they aimed for 10-12 eggs in an IVF cycle. However, apparently 15 eggs is already getting into the territory of ovarian hyper-stimulation syndrome (OHSS), which can cause complications for the donor (in addition to decreasing the quality of the resulting eggs). In order to steer clear of those complications (and since it’s not a very exact science), our clinic will aim for 6 eggs in this cycle. Combining this number of eggs with Marie’s age, we arrive at a 25% chance of it working.

All of this is nicely summarized by this chart from my doctor, which I snapped a (poor-quality) picture of at our last appointment. It shows the predicted live birth rate as a function of age and egg number. The important thing to notice is how the live birth rate starts decreasing again above 15 eggs. Even with a younger donor, this would limit our success rate to 30% (for 6 eggs) or 40% in the very best case of exactly 15 eggs.

IVF live birth rate
Chart from our clinic showing predicted live birth rate as a function of number of eggs and donor age. Note that the success rate starts decreasing again for a large number of eggs, where ovarian hyper-stimulation syndrome (OHSS) can cause complications for the donor and affect egg quality.

In summary, not only are the odds not 100%, but it’s actually likely that this cycle won’t result in a baby. We will continue to be cautiously optimistic, but don’t expect me to be googling gender-reveal cake recipes quite yet.

What genetic diseases will our donor be screened for?

~ femmephysicist ~ Leave a comment

In just a few short days, our egg donor Marie and her husband will be flying in from the US for her screening appointments in Belgium. In addition to meeting with our doctor, a psychologist, the coordinating midwives, and etc, a big part of the jam-packed day will be a meeting with a geneticist. This geneticist will be searching for any genetic diseases that may preclude her from donating her eggs to us. But what genetic diseases will they be screening for, specifically?

There are four tests she needs to have, and the only one she’s had so far is the chromosome analysis. As I described in a previous post, Marie found out that this test can be done much more quickly in the US than Belgium, and she even convinced her doctor there to write up a lab order. However, we still weren’t sure if the results would come in before the screening appointments next week. We even had a bet about what would come back first: the results of the chromosome analysis, or her new passport. (I was betting that the passport would be the last to arrive, leaving us biting our nails until the very last minute.)

Well I lost…the passport came back first. But we also got the results of the chromosome analysis! All normal, as expected for that particular test given that she has two healthy kids. That leaves three more tests that she will need to have done when we’re in Belgium next week.

What are the additional tests?

The are three other diseases that they specifically screen for:

  • Fragile-X: A genetic disorder characterized by intellectual disability, behavioral challenges and certain physical traits like a long face. The likelihood of carrying this gene is higher for women, where approximately 1 in 151 are carriers.

  • Spinal Muscular Atrophy: A genetic disorder that affects the control of muscle movement. Approximately 1 in 50 people are carriers.

  • Cystic Fibrosis: A genetic disorder that causes severe damage to the lungs, digestive system, and other organs. Approximately 1 in 23 people are carriers.

We were a little shocked to learn the statistics for these, especially for cystic fibrosis. Even if Marie is totally healthy otherwise, and even though my husband would also have to be a carrier to result in the baby having a 1-in-4 chance of getting CF, they won’t let her donate if she’s a carrier.

Then is that it?

So if Marie passes all of these tests, then does she get the all-clear to donate? No, because as I’ve mentioned before, we’re apparently trying to create a genetically-flawless, award-winning baby.*

The geneticist will therefore also check her family history for a number of other inheritable diseases. They won’t say exactly what they’re looking for — I think partly because they know people would just lie if they knew. But I understand that a few of the ones on the no-fly list are breast cancer and other inheritable cancers, autism, and epilepsy.

If they do find any of those, then Marie’s out of the running, and it’s back to the drawing board for us. That would be extremely frustrating — to say the least — since most people with any number of issues can pop out a baby any time the mood strikes them. It would also be quite a blow since we had such a difficult time finding a donor in the first place. So let’s hope that doesn’t happen, and that we can move on to Stage 2 of creating this genetically-superior wonder-baby.

*(Unless my husband has any diseases, which they don’t care about in the slightest. It’s perfectly legal to pass down your own genetic problems to your baby. You just can’t give them someone else’s!)

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

~ femmephysicist ~ Leave a comment

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.