An Exercise in Futility: IVF#2 (and fallout from IUIs 3-5)

Super-Secret Post
Concerning cycles 47, 48, and 49 (August, September, and early October 2015)

This post is really long. I’ve decided to add a tl;dr section.

  • Our doctor didn’t care that we had a third loss in our preceding IUI since it was so early as to be deemed diagnostically insignificant. This seems to be consistent with other practices.
  • We proceeded with a slightly different round of meds to try to improve my egg quality and resulting embryos, over the course of two cycles, which hilariously involved taking birth control pills for three weeks.
  • I learned how to give myself shots! Out of pure, desperate necessity.
  • The egg growth phase went well with many fewer “junk” follicles meaning I didn’t have the adverse reaction and longer, more painful recovery of last time.
  • The egg retrieval went much more smoothly thanks to improved pain management (both medication and also frame of mind) but the nurses showed their ignorance to the realities of the process which was frustrating.
  • All these successes were for naught when all 7 embryos were too abnormal to consider transferring back. The result was two cycles (and an obscene sum of money) completely wasted. The first protocol was technically more successful, since at least then we had something to put back and hope it implanted.

Before we could start IVF#2 we had a follow up on our summer IUIs and third chemical pregnancy. Three is usually the magic miscarriage number where they stop saying “Don’t worry, one or two miscarriages don’t affect your long-term odds”, so I didn’t know if we were going to have a bunch of extra testing triggered by the third CP or not. I assumed so.

In the mean time, I made sure to make delaying IVF until the fall count for something by doing lots of errands by bicycle and finally going for a hike up in the Gatineau hills.

My takeaway from our follow up made me feel like our doctor didn’t consider such early losses to count at all. No “repeat pregnancy loss” panel, and the doctor interpreted my query regarding testing as me demanding it. Well no, if you aren’t ordering the testing, I’m not trying to overrule you; I just thought I knew what was about to happen.

My doctor’s opinion was corroborated by the repeat pregnancy loss specialist of someone I know online — this forum member actually had to take a plane for the appointment wherein the specialist opened her chart, said “Oh, these are all losses at four weeks; I can’t do anything for you”, and showed her out. That put me so much more at ease that my doctor wasn’t being stubborn about a referral. Thank goodness for online infertility buddies <3

It seems like they aren’t considered diagnostically relevant because we don’t know how many are happening out there in the wild. Even if every woman who was late and got a positive test at home before a heavy period reported it, there’d still be others lost before a late period (I heard from a woman who watched her pregnancy tests go positive, darker, and then negative all before her period was due and arrived). Not to mention all the women who never even realized they were late or aren’t regular enough to even call it late. Maybe these early losses happen all the time and it means nothing.

My doc ended up splitting the difference on the decision by ordering the publicly funded or inexpensive tests and pushing the $1000 bloodtest until later.

Thanks to lucky timing, aggressive scheduling, and the fact that the clinic can do the sonogram they wanted in-house, I could squeeze all those tests in before our IVF even if some of them overlapped with our ramp-up cycle.

Because yes, we were going ahead with IVF#2. In the interest of using the information from last time (i.e. “we sucked at IVF”) we were trying a different medication protocol, one spanning 2 cycles and requiring 3 weeks of meds in the first cycle to suppress my ovaries prior to stimulating them in the second.

Surprisingly, they weren’t going to reduce my risk of getting OHSS (the long, swollen, uncomfortable complication from last time which delayed recovery and prevented me from transferring an embryo the same cycle the eggs were retrieved) by either a) using a different medication to trigger ovulation (because this protocol left them unable to), or b) planning from day one to freeze any and all embryos instead of attempting a fresh transfer. So, I’d be vulnerable to the seriously long and brutal recovery of last time, and have the layer of anxiety brought on by waiting by the phone to learn if I had to show up at the clinic 3 or 5 days after the retrieval. Again, the amazing freedom of having no job shows its privledge; at least I wouldn’t have to keep work appraised with whether or not I could come in.

We left that appointment with directions to start everything at my next period… which came while camping, five days early, shifting timing significantly. And I had to call the clinic and pay fees and get a schedule, and then faced the possibility of needing to bring meds AND stab MYSELF during a long distance trip I was taking without Mr. EAP when that was NOT supposed to be the case. Fortunately, unlike other protocols, it was ok to not get through to the clinic until day 3, so I didn’t have to call from our campsite or cut the trip short.

First came the birth control pills. Yup, birth control. Turns out, if you need to take meds to quiet your ovaries to a low, low baseline, there’s already a mass-produced, very-inexpensive prescription available for that. Side effects include nausea, headache, and soul-crushing irony.

No, seriously. Anyone who’s started a new brand of pill knows there’s a chance you’ll react horribly for the first three months, and since I was only on it for three weeks I knew anything was possible. The nausea was so bad I had to implement tips for morning sickness (saltines before trying to do anything in the morning, ginger tablets to put off exhaustion from gravol, etc). Soul-crushing irony.

Remember that aggressive scheduling of tests and prep I was counting on? In one day, I squeezed in my salinesonohistogram, education session for new meds and a refresher on needles, a trip home to sort through said meds and grab my suitcase, and a flight out at 9pm. Sure enough, I was going to need to give myself injections during the trip, increasing the feeling of “Holy crap, how can I leave in the middle of an IVF protocol?! I have to be here for it to work!” As luck would have it, for this extremely busy day, I had needed to pack a lunch, and that lunch required an ice pack. After a failed attempt to stab myself in either the stomach or thigh, I tried numbing the area first and then finally stabbed myself in the thigh. Whoo hoo! I stabbed myself!

The nausea got pretty bad a couple of times during my vacation, but the hardest part was I really, really didn’t want people to think I was pregnant. The group I went drinking with probably believed me, but it felt like a very badly covered up early pregnancy symptom otherwise. Around the nausea, I managed to have a great trip with hiking, biking, fancy food, and good friends.

After spending the first 4 days feeling like I should be doing more, I finally relaxed… and then almost forgot to start my shots on the sixth day! I even have an app that should have prevented this since I can configure it ahead of time to start a schedule on a future day. I just… hadn’t yet.

On the second-to-last day of the BCP, I almost had to cancel cooking Mom a birthday dinner I was feeling so crappy, but a friend drove me to the store to get the pieces I was missing and then I felt better in time to cook (with Mr. EAP contributing at least half the labour).

I got a period in between cycles as expected, and my bloodwork confirmed that my ovaries were sleepily hanging out doing nothing, ready to be shocked into action.

In preparation for my life being derailed for 2 weeks, I actually managed to clear my time-sensitive to-do list for the first time since the previous IVF cycle. I wanted the freedom and peace of mind to just deal with whatever shit went down this time.

I entered the routine of stimming at home with monitoring of follicle growth every two days. Mr. EAP took over doing some of my shots so we could alternate thighs and stomach for injection sites. Taking the latest appointment of the morning for ultrasound monitoring is always win-win for me and the other patients since I don’t have anywhere to be afterwards and would rather sleep in later, while the working ladies try to squeeze in appointments before work. The nurses love it when I “volunteer” for the last slot in the monitoring appointment hours.

I did push myself a bit too hard too late into the process when we had a dinner party we had to bike to and it was on the day I finally felt too bloated to continue living life as normal. We biked over slow and easy, but I still had to sit out a bunch of the cooking to recover after. The next day, I penned this for my online buddies.

Hello yoga pants my old friend…. I need your stretchiness again… Because of bloat so softly creeping… Gained a pound while I was sleeping… And the bruises that were planted in my thighs still remain… Within the week… Of stimming.

As I was monitored and saw a different doctor each time with lots of opportunities to ask or re-ask questions, I filled in some gaps about how this was going to work. They weren’t able to give me the meds that would definitely avoid OHSS, but the way they were growing follicles this time usually reduces the number of immature follicles which don’t help egg count and do contribute to the scary hormone levels that cause OHSS. On the short protocol I had around two dozen of those only-harmful follicles, and the hope was that I would make fewer this time.

It was also hoped that growing out the bigger follicles more slowly would increase the quality of the eggs and therefore the quality of the embryos. And boy were those eggs sloooooow cooked… it took 4 days longer than the other protocol to get to the point where arranged our retrieval appointment and triggered ovulation.

At this point, I worked myself up by accident. The last time, the number of eggs retrieved matched the number of follicles measuring 13mm or greater on the last ultrasound before surgery. I counted the follicles fitting that criteria again this time, and expected 18 (and hardly any small, crap, complicating follicles! Whoo!) compared to the 13 retrieved last time.

One big bonus of doing IVF again — I took a break from my diet, finally. It deserves its own post, but in another case of “feel like I’m doing something”, I took up a different balance of macronutrients on the recommendation of a tiny, non-published study about embryo quality. Embryo quality was my problem, and these changes to my diet weren’t so bad, so I had gone for this. Sure, IVF might not work, but by the time we’d finished transferring any embryos, even if they didn’t take, there’d have been time to have been on the diet again for three months. I could take a week off around egg retrieval without worry.

Retrieval day was better than last time in some important self-care respects (blogging through it in real time, knowing what to expect, getting the pain meds upped ahead of time, bringing in headphones and music and checking out while they stuck me (it’s conscious sedation)) but I was heartbroken when the nurse reported that 9 eggs had been retrieved. Half of the number I’d predicted? What happened? (The nurse couldn’t possibly know, of course.) The nurse then decided to kick me while I was down by sarcastically saying, “What? Do you want MORE than NINE babies?”

You know those times when you can’t think of the right thing to say until *after* a situation? This was not one of those times.

“That’s not how that works. Embryo grow out here is about 40%.” But I hate trying to reason with the nurses in the recovery room; they all look at me like they want to pat me on my head and say “don’t think so much”. (Oh and they did say that this time.) They pulled “oh don’t worry!” stuff on us last year when we had to cancel the transfer of a fresh embryo as well; this time, I filed a formal complaint that they didn’t know enough about the process to support us properly if they implied that nine eggs retrieved meant nine babies. For fucks sake.

Anyway, off home again, no puking this time since I knew better than to try to eat or drink (although I was soooo hungry). Settled in on the couch with everything I could need, it was just a matter of taking care of myself (avoiding OHSS, fending off the residual side effects of the pain meds, and trying to not go mad waiting for the phone to ring).

The next day, we got our fertilization report. Although only 7 of the 9 eggs were mature, all had fertilized! We would only get a call the next day if things weren’t going well enough to wait until Day 5 to transfer an older embryo.

The next day the phone rang. Well, shit.

And it was even worse than the news I got last time on day 2. All 7 had cells with more than one nucleus, indicating they probably would not result in pregnancy. They definitely would suck at Day 3, and might still not look suitable for transfer by Day 5. Nothing to do now but wait until Day 5.

In the mean time, my girth and weight went down, so I wasn’t getting OHSS again. OK, so I would be able to do the transfer on Day 5 if anything recovered (although the anti-OHSS drugs they could give me were making me feel a different kind of crappy, yaaaaay). IVF is about looking at my eggs, playing chicken with my health, and not at all about getting pregnant, right? So I should have just been happy I wasn’t sick, right? Ridiculous priorities.

I assumed if all the embryos’ growth arrested we’d get a phone call, and we hadn’t before it was time to leave for the clinic for a theoretical transfer. But the car hadn’t even left the neighbourhood when my cell rang and we turned back… nothing to transfer. Nothing to freeze.

Nothing to show. Really, just two lost chances at impregnating me in the last two cycles, since I was on birth control for the first, and all the second cycle’s eggs had been removed from my body. A lower chance of success than naturally, since we at least have one miscarriage from THAT.

I thought I was ready for worst case, but it turns out I wasn’t ready for this. (Someone did help by pointing out that, if I were truly expecting nothing, I probably wouldn’t have gone through with it, so it’s probably not an outcome to be naturally ready for.)

The doctor asked if there was anything I needed. I said, “Please just get me our follow up for as soon as is possible.” We’d be waiting another month.

Oh, and I had to get back on my diet for egg quality ASAP since I’m supposed to be on it for three months before expecting results.

This round of IVF came with its own non-medical kick in the pants, followed by a mitigation attempt. I was invited to go on quite an adventure with my Dad and brother but couldn’t because of IVF (well, back when they were planning, the reason was because I didn’t have any clue what would be going on, but expected IVF or being pregnant, and turned out to be right (egg retrieval two days before they left)). Which cost the same and got me jack shit… but we received a very generous gift to do something similar together since we couldn’t take that trip, which we decided to use to offset the cost of the cycle. A few days after the cycle was definitely over, my dad and brother summited Kilimanjaro.

So, money wasn’t an issue this time, and it was really nice for our savings to instantly recover. The flip side of that being the realization that one of the worst parts of having a problem you can’t fix with money is realizing you are a spoiled brat who thought you could fix any problem with money.

One Response to An Exercise in Futility: IVF#2 (and fallout from IUIs 3-5)

  1. Carrie says:

    Wow. You have been through a lot. I had no idea IVF was so painful and generally awful. Hugs and take care. And thank you for writing these entries. Definitely an eye opener for me. I appreciate that you are willing to share all these details of your journey.

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