I don't know what I want anymore

I know I haven't been writing much lately. I feel that I  have a lot of negativity and sadness lately and sharing my negative feelings over and over again serves no real purpose. Also, not much to update on in terms of action, since we aren't cycling right now.

I have received some good recommendations for clinics and doctors in Toronto, and I keep saying that I am going to set up some appointments, but something is keeping me from actually doing it. This is a real change for me because until now, I have always been extremely proactive and have often done cycle after cycle in quick succession. My governing philosophy has always been the quicker I can do whatever it takes to have a living child, the better, like ripping off a band-aid. 

Lately, though, I have had strong mixed feelings about how and when I would like to proceed. I really don't have a big problem with the IVF - I feel like I can keep doing it over & over as I have. It can be emotionally and physically exhausting, but it is sort of my norm and it is not disruptive to my normal routine and daily life in the way it was in the beginning. (Actually I will revise that slightly - it makes me feel pretty crappy and less productive in all other aspects of my life but I am used to functioning that way.)

For better or worse, it turns out that you can pretty much get used to IVF as a 'lifestyle' in the same way people with all sorts of chronic diseases get used to whatever repeated invasive treatments they need to keep their condition in check.

What I am having more trouble managing lately is the uncertainty - that I will go to such epic lengths to get pregnant in the first place, but that we still don't know why I need IVF to become pregnant and then the larger issue of whether I can have a healthy pregnancy that I am able to carry past viability. It feels like a cruel science experiment - mostly cruel to the to-be conceived baby - to attempt to carry him/her when my ability to do so, at least in my mind, is so gravely in question.

I am really terrified by the prospect of being pregnant again. It's a shame, because the IVF cycle we did so shortly after losing the twins, I was in a much better mindset to be pregnant again, and then I was of course very briefly pregnant again, but now that's over and I feel like I am in a much worse place than I was then to attempt another pregnancy.

I guess this is all pretty normal - I have heard of others in the babyloss community who are very anxious to become pregnant again immediately after the loss, and then a few months later, once the shock wears off and the real grief work begins, the initial desire turns into fear and reluctance.

I think the main issue here is that I am becoming increasingly ambivalent about exactly what it is that I want. I also feel increasingly tortured about both our losses and our infertility being unexplained and I am not sure exactly what is that I want from that either.

We could do a second round of more extensive testing - many of the autoimmune tests, for instance, but then as I have probably written about before, it is so unclear what to do with that information. If everything comes back negative I guess you get some peace of mind but you still have no answers. If one or two tests yield a positive result, I think there is oftentimes a temptation to attach too much importance to it as "The Answer."

And let's say we proceed with immune testing, for instance, and get some positive results, are we willing to try the therapies for it even though there are no good large-scale clinical studies or really evidence-based medicine to support it, especially considering the potential side effects and the cost? If we aren't willing to attempt immune treatment, there is probably no point in doing the tests.

The other unopened can of worms is doing a laparoscopy to rule in or rule out endometriosis. I do have some of the symptoms but my doctors in Israel felt that once we were doing IVF anyway, it didn't matter whether I do or don't have endo unless it is a major quality of life issue. Their reasoning was that they would recommend IVF in that case anyway and the added value of excisional surgery when doing IVF already is really unclear.

There is actually a series of two articles in this month's Fertility & Sterility about endometriosis and pregnancy outcome - basically saying that  women with endometriosis have greater risk of bleeding during pregnancy due to placentation and implantation issues, greater risk of inflammation to the membranes, and greater risk of pre-term labor and birth. Sound familiar? Of course I was struck with the fleeting (very hypothetical) thought that maybe endo could explain my seemingly unrelated fertility and pregnancy-related fiascos. With that said, the thought of very possibly unnecessary surgery makes me cringe in a major way.

I guess the options at this point are:
1) Set up a few consultation appointments here in TO and see what the docs recommend with an open mind
2) Same as #1 but go in with the intention of proceeding with a new IVF as opposed to doing further testing
3) Same as #1 but explicitly ask for certain additional testing (i.e. lap, immune testing, etc.)
4) Do nothing (though continue to try on our own, for what it is worth) and 'enjoy' my break until we return to Israel next summer and/or I return to Israel to do an embryo transfer.
5) See a counselor with Y and see whether we can get anywhere on the adoption issue (he is very much against it).
6) See a counselor so I can work on figuring out for myself what it is that I want...no other plans in the mean time.
7) Put starting a family on hold indefinitely and contemplate what being childfree would look like.

where we are

Today I am 13dp3dt. I have only received BFNs so I am 99% confident that we are out this cycle, but since we traveled to North America at the end of last week and since it was Labor Day weekend on this side of the pond, I was only able to get a beta drawn this morning. The phlebotomist here was AMAZING...I never thought the phlebotomist in Israel was bad or anything, but this woman was "off the hook" as Y might say :)

This cycle was pretty depressing. I knew since we only had one embryo that survived thawing to transfer and since it was more fragmented than the other embryos we have transferred in the past, that our chance of success this round was probably quite low. However, for the first time since starting IVF, I actually had some pretty strong 2ww symptoms, which made me a little hopeful. The symptoms were strongest 4-5dp3dt and disappeared suddenly by 7dp3dt. In fact, when I went in for my progesterone check on 7dp3dt, my P4 was the lowest its ever been at this point of my cycle, 22, and I was told to start taking 2 supps mid-day in addition to my usual 2 in the morning and 2 before bed.

Last week we met with the new RE and we have decided that for our next fresh IVF, we will be switching clinics. He said that he would support us attempting a blastocyst transfer (my current clinic is very anti-day 5 transfer) and concentrating more on the fresh cycles. He said that he would recommend monitoring every day as we approach trigger, since based on my last fresh cycle, it seems like they missed my E2 peak and then I just sort of plateaued. He also said that he would add in LH as well so we aren't doing straight FSH, which might help with the final maturation of the eggs, and that he would stick with the antagonist protocol and probably the same dose of Gonal-F.

I raised my concerns about possible immune/implantation issues but he seems to be just as much a disbeliever in autoimmune infertility/implantation failure as my previous docs. I can't help it - being 27, essentially unexplained, with no obvious egg or embryo quality issues, 6 IUIs, and now 3 IVF transfers under my belt, 1 loss and no other positive cycles, I can't help but become increasingly paranoid that everything is great except that my body is attacking embryos.

Like the REs at my current clinic, Dr. T. said that IF and IVF failure caused by implantation problems is much more rare than IVF failure caused by embryo problems and in the absence of good measures of embryo quality and competence beyond morphology, we just have to assume that our problem lies in the embryos themselves because that is much more common. He also said that in terms of immune testing, he doesn't take much stock in it because there is such an endless array of genes that could be involved and that the actual clinical significance of the results for the tests that are currently available is very unclear. I know Y agrees with this view completely, but I still feel increasingly helpless and desperate in light of not having any satisfying answers for either our infertility or our treatment failures.

As far as Dr. T's general view on pursuing further testing, he says that medicine is currently much better at treating infertility than understanding it. I know that this is how many REs (and physicians in general) think about things but as a scientist, I just have a lot of difficulty with this mentality. He did say he would put in a request for a thrombophilia/clotting panel, but that it may not get approved because he doesn't think my history really warrants the testing.

I know some doctors in Israel who will throw Clexane (Lovenox) and prednisone at almost everyone who walks in the door, especially with previous IVF failures, (I think these types are even more common America), and I sort of want a doctor like this, but I know Y would disagree and says that it is irresponsible medicine to prescribe medications with serious side effects with no strong clinical indication other than "Why not? It might work!".

I would counter this argument by asking which is the worst of 2 evils - potentially unnecessarily subjecting a woman to mega-doses of hormones again and again because she keeps failing and you are unwilling to be more bold in her treatment or throwing in the kitchen sink and prescribing her a bunch of stuff that is potentially harmful (though arguably less so than the repeat mega-doses of hormones) with no clear indication for it other than it might just work and therefore eliminate the need for future IVF cycles? I have no idea - I guess only a prophet could answer this question and I suppose we see both approaches in infertility treatment all of the time. It will be the end of October/beginning of November when we begin another fresh IVF cycle. Anyhow, that is all that is new with us on the IF front. I hope that the end of summer is treating everyone well.

getting ready to write this round off...

I'm sorry I've been so lousy about writing the past week. I am just feeling very down and woe-is-me. I am quite certain none of the 3 embryos took. I had my progesterone check yesterday (7dp3dt) and my progesterone was lower than it's been during previous cycles, so it would seem to me that clearly there isn't anything going on in there making endogenous progesterone. Aside from the estrogen headaches, I have been completely symptomless, no cramping, no twinges, nada.

I just wish we had some insight into why my body doesn't get pregnant so that there could be something for us to fix. I feel like IVF isn't really fixing anything, it's just improving the odds by allowing us to produce many more eggs and also embryos in a given period of time than we could ever generate naturally. I just feel so broken and fundamentally not like a real woman.

the unabridged version

For a while now, I have wanted to write out a more complete narrative of our experiences than the timeline posted on my sidebar, especially since we began fertility treatment before I began writing this blog. Finally, today I had some time and also the motivation to write everything out. It can be found under the tab "Our Journey...So Far". It was actually quite therapeutic to write and I hope that at some point it will be helpful to someone else. I would say "enjoy!", but it's not such a happy story so far - I just pray that some day it will have a sweet ending!