How to talk about infertility

Two weeks ago — and a mere five days after my last failed in-vitro fertilization (IVF) embryo transfer — I started up the estrogen again for another frozen embryo transfer (FET). This will be our sixth attempted transfer (our third with donor egg embryos), and it got me thinking about why I started this blog in the first place.

It was partly to keep our close friends and family up-to-date on our progress, since it’s well known that I’m terrible at phone calls or keeping in touch in general*. But it was also to help shed light on a process which is often endured in secret. As a result, many well-meaning folks have no idea how to talk about infertility.

For instance, imagine that you’ve been trying to conceive (TTC) for not just months, but years. Imagine everyone else around you continues to fall pregnant. Imagine you’ve tried everything you could think of to help your body and mind: exercise, yoga, mindfulness, vitamins, time off work, drastic diet changes, numerous specialists, some weird Chinese massage guy who asked you to bring a jar of your own pee to the first appointment**, and etc, etc. Imagine you’ve slowly and painfully come to the devastating realization that you will never get pregnant without countless injections, hormone supplements, and surgeries, and that even then, (in my case), there is literally zero chance that it will ever be with your own eggs.

Now imagine that someone who had their kids naturally tells you “It will happen!”

Be honest: do you sort of want to punch them?

It’s for just this reason that many people choose not to talk about their infertility struggles with friends/family in the first place. For example, this is precisely the reason that my fellow IVF’er Elizabeth hasn’t told her mother. “The things she would say…I’d kill her! She’s safer not knowing.”

What not to say

Since coming out about our own (5+ year) infertility journey, my husband and I have definitely gotten our fair share of tone-deaf comments and unsolicited advice. While I obviously try to focus on the underlying good intention, it can be quite difficult when you’re hearing a similar comment for the Nth time. And so, in the spirit of education, here is some unsolicited advice back on what NOT to say to someone who is struggling with an infertility diagnosis:

  1. “I struggled to get pregnant too…it took us [X] months.” Many people say something like this in an attempt to empathize. However, to someone with an infertility diagnosis, this is like comparing the minor engine trouble you had on your boat to the sinking of the Titanic. There’s a huge difference between having sex with your partner for a few months in a row and resorting to assisted reproductive technology. I understand the desire to relate, but it’s probably best to keep this to yourself.
  2. “My friend’s nephew’s dermatologist did IVF and she has two beautiful children!” That’s great. I’m very happy for them. I wish it could work so easily for all of us. But even within the infertile community — and this is a key point — there is a huge spectrum of diagnoses that range in severity. There’s also a huge difference between those who were successful on their first attempt, and those who have endured multiple failed cycles with maximum-dosage hormones. Unless your friend’s nephew’s dermatologist tried just as hard for just as long, they are, by comparison, lucky.
  3. “It only takes one.” (Referring to eggs.) This one comforted me very briefly at the beginning, when I first received my premature ovarian failure diagnosis. However, it quickly became clear that I didn’t have even one good egg left, and that I would have to find an egg donor. Even for those going through IVF with their own eggs, it trivializes what is an extremely complex and emotionally taxing process.
  4. “It will happen!” This is one of the most unhelpful comments. It’s also extremely dismissive. Personally, I’ve spent the last ~2 years coming to terms with the fact that it will never happen for me, at least without resorting to egg donation. For some women, it won’t happen ever. Life isn’t fair, and acknowledging that is far more helpful than throwing around fallacious niceties.
  5. “There’s always adoption!” If I had a nickel for every time someone said this to me…we still couldn’t afford adoption. But in all seriousness, this topic deserves its own post at a later date. For now, suffice it to say that this option is no replacement for one’s fertility, and it’s also much more difficult than most people realize.
  6. “I hope it works — my children are my everything.” A colleague of mine actually said this to me at a conference recently. I know they meant well, but it’s basically just rubbing salt in the wound. I get it. Kids are great. But emphasizing how much you love your children is like telling a deaf person how great music is. “It’s so amazing! You’d love it!”
  7. “God has a plan.” I’m not sure where to even start with this one. First off, it’s making quite a big assumption about someone else’s religious beliefs, which may not mirror yours. Secondly, even if there is some big master plan, people are still allowed to be sad when things are royally sucking. I actually do think things will work out for us eventually, somehow, but that sure as heck doesn’t mean I’m not allowed to rage against the unfairness of the Universe in the meantime.

What to say instead

While comments like those above are obviously said with the desire to impart optimism, the truth is that they often have the opposite effect: they can make those struggling feel unheard or unseen — like they’re making a big deal about nothing. Usually, it’s actually way more helpful to just say “I’m so sorry, that really sucks.” Such a simple confirmation can be (counterintuitively) MORE energizing. That’s because it prompts the person to think: “Other people acknowledge this sucks, but I’m surviving…because I’m strong!”

And speaking of strong, we’ll be driving to Belgium on Wednesday of next week for our 6th attempted embryo transfer. That will catch us up with my friend Elizabeth, who has herself gone through six transfers. As she pointed out to me after our 5th failure, there is actually a small upside to enduring so many attempts: Those around you may have finally gotten a sense of how difficult this process is, and thus how to respond appropriately. “If there’s any silver lining, it’s that by now, people will have stopped saying ‘It will work this time — I can FEEL it!'”

xx

*Apologies for this to my mother, who has been known to excitedly answer the phone with “It’s so great to hear your voice!!!” before I’ve even uttered a word.

**This may have happened to a very distant friend-of-a-friend who shall remain nameless. Yes, she drove to the appointment with a jar of pee. No, she’s not proud.

The outcome of IVF attempt #5 is…

Normally I would try to use my sarcastic sense of humor and sardonic wit to shield the reader from the more emotional parts of this “journey”. Normally, I would try to find the positives in the negative or end on an uplifting note. But some days are much harder than others, and yesterday was one of them.

My blood test came back negative.

Not pregnant.

Again.

This was our 5th embryo transfer attempt, our 4th actual transfer (no embryos survived to transfer in IVF#3), and our 2nd transfer using donor eggs.

I would like to say that I was a paragon of strength while waiting to receive the news, but I was already teary-eyed even before having my blood drawn — knowing it was probably over. I was supposed to go into work while the lab processed my blood, but instead I cleared my schedule, went home, and crawled into bed to wait for the call.

Does it get any easier?

Just as I wasn’t the model of bravery while waiting to receive the news, I haven’t exactly been a shining example of mental fortitude afterward, either. I had hoped to treat myself to a cozy Netflix binge session yesterday afternoon, but even watching TV required more focus than I could muster. Even today, when my husband texted me to ask how I was doing, I replied with a picture of a large pile of used tissues.*

You’d think that with so many failed attempts, we’d be used to it by now. And I am, unfortunate as that may be. But for some reason, this one was still a particularly tough pill to swallow. I think I had prepared myself for the fact that donor eggs may not work the first time around, but I was still hoping that we’d get lucky the second time. With each new failure, I feel us inching further out in the distribution toward the “unlucky” IVFers, and it’s not a fun club to be part of.

What now?

We’re not anywhere close to giving up, in case you were worried about that. I still maintain that every failure makes us stronger, and we also still have four donor-egg embryos in the freezer. If the Universe wants to keep testing my patience, I aim to prove that I am as zen as a freaking Buddhist monk.

With that willpower, and because I am apparently something of a masochist, we are diving directly into another attempt this next cycle. That gives me only a small (~few day) respite from the hormone therapy, but it means we can squeeze in one more attempt before my month-long international work trip in December. I will therefore start the estrogen again as soon as my period shows up (which, given the crazy-thick uterine lining I managed to grow this time, I expect to resemble the Red Wedding.**)

In the meantime, I will take these few days before the next cycle to grieve this latest loss, which — there’s no way around it — totally and completely sucks. I think my sweet, wholesome mother summed it up best when I texted her the outcome, and she texted back “Fuck!”

xx

*Even in my grief-laden state, I still found this quite amusing.

**The Red Wedding is a Game of Thrones episode where (spoiler alert) almost everyone at the wedding is slaughtered. Basically, a bloodbath.

Our frozen embryo transfer

Some of you may remember that the fresh embryo transfer after our recent donor egg IVF cycle was a bit of a disaster. Out of 15 fertilized eggs that had been developing well as of day 3, we only had a single 5-day blastocyst, and it was not the best quality (4BC, where the number is the stage of development and the letters are the quality of the components). When I asked the doctor about the potential for the remaining embryos to catch up, he was a massive dick. And to top it off, I hadn’t properly timed my water consumption to fill my bladder, meaning that my uterus wasn’t visible on the ultrasound screen, and the embryo transfer had to be done ‘blind’.

It was not the best ending to our first donor egg IVF attempt, which had been going so well up until that point.

Well lo-and-behold, five more blastocysts ended up making it to freeze on day 6, and I’ve spent the last few weeks growing an exceptionally cushy uterine lining for a frozen embryo transfer (FET) attempt. I say ‘attempt’ because there’s always the possibility that the embryo will fail to defrost. Unfortunately, you don’t know if this is the case until the day of your appointment. Since our appointment was first thing in the morning in Belgium, we made our way there the night before without knowing if there’d even be anything to transfer.

The call

We were still at our Airbnb the next morning when we got the call: the embryo survived defrost! We were thrilled, and we vowed that this transfer would go better than the last. I immediately chugged twice as much water as I had the last time (followed by another 500mL for good measure), and I vowed that under no circumstances would I ask the grumpy doctor any questions. (“I’ll just nod mutely to whatever he says, scout’s honor!”) We also expected the embryo to be better quality (4BB), since we knew we had at least one of those in the freezer.

You can imagine our surprise, then, when we showed up at our appointment to learn the embryo was only a 3CC — i.e., not as developed and poorer quality than our best frozen embryo (Strike 1). I couldn’t fully take in what he was saying and immediately asked a question (Strike 2) about why we were transferring this poor-quality embryo, to which he responded that the defrosted embryo is chosen randomly (Whaaaaaat??)

IMG_3992
The 3CC blastocyst that we transferred on Thursday.

I kept a brave face and we went ahead with the transfer. There was a big screen where we watched a magnified video of them sucking the embryo up into the transfer device thingy (that’s the technical term), and then the technician handed it to the doctor through the window in the wall. My bladder was full enough to see my uterus on the ultrasound screen (though at 17mm, it’s probably hard to miss). After the transfer, we saw a new white mark where the liquid containing the embryo had been successfully deposited.

PUPO, but not hopeful

This all went down last Thursday, which means I am once again Pregnant Until Proven Otherwise (PUPO). But despite what my well-meaning friends/family keep assuming, I am neither excited nor hopeful. The thing is, once you’ve gone through multiple failed transfers, it becomes hard to imagine any other outcome, particularly when the doctor says the embryo ‘isn’t the best quality’. I understand that poor-quality embryos can still result in beautiful babies, but I have also seen the statistics on implantation rates as a function of embryo grade. I’m not being negative — just realistic.*

With that said, I am still extremely grateful to our egg donor, Marie, for giving us the chance to make it this far. I’m also grateful for the four more embryos (‘frosties’) still in the freezer. And I’m happy to report that we had to stop three separate times for me to pee on the 2-hour drive home from our transfer. So, you know, at least I’ve finally got the full-bladder part down for the next try.

xx

*Ok, maybe I’m being a bit negative, but I recently read that IVF is as stressful as divorce or cancer in the family, so it’s bound to happen. (The progesterone shoved up my hoo-ha probably isn’t helping either.)

A small (17mm) victory

The last couple of weeks didn’t exactly go to plan. I’ve been prepping for a frozen embryo transfer (FET), where they will carefully defrost one of the extra embryos that resulted from our recent donor egg IVF cycle, then place it in my uterus with what is essentially a high-tech turkey baster. To prepare my body, I stopped taking my birth control pills and started taking estrogen (Progynova) in order to grow a nice thick endometrial lining. And to prepare my mind, I timed all this to occur while I was sipping piña coladas on a Greek island.

Unfortunately, I managed to come down with a nasty little case of laryngitis on the last ~5 days of our trip, which instead saw me pitifully sipping chamomile tea in bed. My clinic assured me that the cocktail of pain killers and antibiotics I was taking wouldn’t negatively impact the upcoming transfer, but I was still bummed that I wouldn’t be as healthy and rested as I wanted.

Lining check

Fast forward to my first day back from holiday, where I started my workday nice and early with a date with Wanda*. The point of this 12-day scan is to ensure that the ovaries are quiet and the uterine lining is sufficiently thick to allow for implantation.

The ideal lining is at least 7 or 8mm thick and displays a distinctive ‘triple-line’ structure that indicates good ‘estrogenization’ and healthy growth of the endometrium. I’ve never had any trouble in this area, but growing a sufficiently thick lining is one of the hardest parts for many women facing infertility.

After confirming my ovaries were dormant (I could have told her that!), the doc headed over to my uterus (it’s like Mrs. Frizzle and the Magic School Bus over here). Immediately her eyes bulged, and she pointed at the screen like ‘Get a load of this’. She asked me to repeat what medication I was taking, and when I answered Progynova, 2mg, three times a day, she said “Well it’s working.”

Since I don’t have nearly as much experience as she does staring at fuzzy ultrasound screens, I still didn’t really know what she was talking about…until I saw her measure the endometrium thickness: 16.93mm.

My 17mm triple-lined endometrium in all its glory.

Since I posted this image on Thursday, Instagram has been losing its collective mind. And with good reason — studies show that pregnancy rates correlate with lining thickness. Many women struggle to grow a lining even half this thick, which probably explains the plethora of heart-eye emojis in the photo’s comments. From all the oohing and aahing, you’d think I posted a photo of a puppy in a mailbox rather than an ultrasound of my uterine tissue.

How did I grow a 17mm lining?

In addition to the heaps of admiration, one commenter asked the question everyone really wanted answered: “Holy hell. 16.93???? How?!”

At first I didn’t think anything of it. I’ve always grown a fairly thick lining (~11-12mm), so I thought maybe it was just a natural gift (& the world’s lamest superpower?) Still, it’s almost 50% thicker than usual, which seems like quite a large deviation. Maybe it’s a weird side effect of the antibiotics I’ve been on? Or maybe that wondrous week I spent spread-eagle in the sun somehow did the trick?

Then I had a realization so obvious that I’m embarrassed it took me as long as it did: I was taking an iron supplement this cycle. I didn’t think of it earlier because I was taking it for a totally unrelated reason. Namely, I’ve been feeling particularly tired lately, and a friend mentioned that low iron levels could be the culprit. I happened to have some sitting around in the medicine cabinet, so I popped it in my pill case without a second thought. I only took it for about 10 days due to unpleasant side effects**, so by the time my ultrasound rolled around, it was totally off my radar.

I can’t be sure it was the iron, of course. There are too many other variables, and I don’t have a control group. But it makes a lot of sense, since iron plays a vital role in the creation of healthy red blood cells. So if you’re looking for ways to thicken your uterine lining, you might consider some combination of taking a Greek holiday, developing severe laryngitis, and talking to your doctor about an iron supplement.

xx

* Wanda is the trans-vaginal ultrasound wand used to check one’s uterus and ovaries. We’ve been having a torrid affair for over a year (don’t breath a word to my husband).

** This is my polite way of saying severe abdominal bloating and constipation. At one point, there had to be at least five Greek salads in there.

A vacation & an injection

You know you were in desperate need of a vacation when, 10 days in, you still haven’t conjured up the energy to do anything besides lie comatose in the sun. When, between sunscreen applications and re-applications, one thing leads to another, and before you know it you find yourself in bed at 9:30pm. And when even then, you need to set your alarm for 9:00am to ensure you don’t miss breakfast.

So yeah, I think I was long overdue for a vacation, and this holiday in Corfu has been amazing — just what I needed. For the first 9 days, we were joined by our favorite British travel companion and partner-in-crime, the lovely Louise, who enjoys making silly jokes as much as I enjoy laughing at them. Highlights included a one-day trip to neighboring Albania via ferry (my 29th country!), and a rainy day car trip to an abandoned village, where we learned the fun and totally unrelated fact that Brits also count seconds in ‘Mississippis’*.

Preparing for a frozen embryo transfer

There’s no real vacation from infertility, of course, which means I’ve also spent this holiday preparing for a frozen embryo transfer (FET) with one of the embryos left over from our recent donor egg IVF cycle. I was trying to time it so it could happen as soon as possible after we get home, meaning I would be nice and relaxed from the long vacation and ready both physically and mentally for embryo transfer attempt #5.

Our first day here, I stopped taking the birth control that’s been necessary to control the timing of my cycles. This was a relief, as I had thought these ~6 weeks on birth control would be a ‘break’ for my body, but I conveniently forgot that the hormones in the heavy-duty birth control my clinic prescribed really do a number on me: nausea, severe mood swings, back pain and cramping — the whole kit and caboodle. If timing isn’t so critical next time, I’m definitely going to skip the pill and risk a natural cycle.

A few days after stopping the birth control, my period arrived as expected, and I started taking the estrogen pills needed to grow my uterine lining. I also cut back my caffeine and replaced beach-side cocktails with beach-side smoothies. My clinic actually said I can have a drink here and there during this stage, but I don’t want to overdo it. One quickly learns that the ‘what-ifs’ afterward are what kill you.

A surprise injection

So where does this injection I mentioned in the title come in? In a surprise twist, it has nothing to do with IVF. Rather, I have a long history of getting very sick on vacations**, and this one has proven no different.

I’ve been feeling like I was coming down with something for over a week, and yesterday I awoke with throat pain so bad that I couldn’t speak, eat, or swallow. My husband managed to find a 24-hour drop-in medical clinic, where I was diagnosed with a low-grade fever and acute laryngitis. The doctor prescribed antibiotics and paracetamol, and he told me to come back in two days.

Unfortunately, the paracetamol did approximately diddly-squat for the pain, nor did any of the five other things I tried in desperation. So this morning, after a brief panic where I felt my airway closing off with mucus because it was literally too painful to swallow, back to the medical clinic we went. This time the doc gave me a pain killer that was injected in my butt.

That’s right: I managed to develop such a bad case of sore throat that I had to have an intramuscular injection. I bet you didn’t know that was even possible!

Will this affect the FET?

I still can’t speak at all, and my breathing still sounds like Darth Vader, but the new meds have taken the edge off and allowed me to eat again. The big question now, of course, is will any of these medications (or infections/viruses/fever) affect the success of a frozen embryo transfer?

I’ve emailed our favorite Belgian egg donation nurse for the clinic’s official advice, but a brief bit of googling implies that it won’t. If the clinic confirms that it’s fine to proceed, then that’s probably what we’ll do. Still, I had hoped this vacation would put me in a very relaxed and healthy state prior to the transfer, and it’s disappointing that that’s not the case. These five frozen donor egg embryos required a massive effort, and we want to feel we’ve given them the best shot.

If there’s any good in all this, it’s that my general state of patheticness has really brought out the natural caretaker in my husband. For instance, this morning I sneezed unexpectedly in the grocery store, and he used his ninja-like reflexes to catch a 4-inch drip of my snot with his bare hands before it fell on my shirt***. So you know, if/when we finally manage to acquire a small human, he’s going to make a really great dad.

xx

*When I expressed surprise to Louise that the British didn’t have their own culturally-appropriate measure of a second, my husband helpfully suggested that they use ‘Yorkshires’, which led to a lot of yelling of ‘ONE YORK-SHIRE! …TWO YORK-SHIRES!’ in our best cockney accents (Louise included).

**On our honeymoon alone, I had the flu so badly that I spent three days straight in our hotel room in Venice, and then, as my grand finale, I broke my tailbone in Sicily and had to go to the ER.

***Sometimes I joke that my husband’s idea of romance is giving me the side of the bed with the outlet, but I have to say: Seeing him holding my snot in the middle of the cereal aisle was pretty darn #romantic.

Post-donor egg IVF cycle wisdom

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.