Jul 22, 2012

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.


22 comments:

  1. It is terrifying. I'm pregnant now after two losses, and its no picnic. And it is all so very traumatic. I hear you about the endo fears, it does come with a higher risk and while plenty of women with this condition carry safely to term, it is still extremely scary for the term of the pregnancy.

    I definitely think additional surgery probably will hurt more than it helps.

    Is surrogacy on your horizon at all? You would be an ideal candidate for it, from the sounds of it, there is little issue with your embryos.

    In the meantime, going to see the counselor sounds like an excellent idea. This is a difficult crossroads you are at.

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  2. I haven't commented in a while, but I've been following your journey closely and just want you to know that you're in my thoughts. I wish you peace and healing, whatever road you choose.

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    1. Thanks, I am still following you and those adorable babies, too!

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  3. I am so sorry for all the feelings that you are experiencing! I wish you the best in whatever you choose.

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  4. I think you should set up and appointment with the recommended doctor in Toronto. A break is good, but don't take a very long one.

    IVF as a lifestyle? Infertility and its shenanigans become a lifestyle on its own...

    This wanting to be pregnant, and being scared? I know it.

    Many hugs. There are no 'the answers'...

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    1. That is what I am afraid of - that while taking a break seems nice now, the more time that passes, the harder it is going to be to get back into the thick of it, you know?

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  5. First of all, I love that you are reading Fertility & Sterility. Academic geekiness FTW! As far as your next steps, I would say that you can start on 4, 6, and 7 without having to make an immediate decision on 1, 2, 3, or 5. Finding things that will help you to heal - as much as you can heal, I know that phrase can sound ridiculous after such an awful event - will be helpful no matter what route you decide to pursue medically. I wish you the best of luck no matter what you decide.

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    1. Thanks and you are right - many of the choices on the list are not mutually exclusive.

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  6. You have a lot of options, and this isn't an easy choice. Whatever you decide will be the right choice for you. I hope you're adjusting to your new home and city well. I wish this move was taking place at a better time for you!

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    1. Yeah, me too - it is a pretty stressful year in our lives to have made this move but I hope it will bring us good things, even if I don't know exactly what they are yet.

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  7. This is so difficult. There are so many options and what ifs. Unfortunately I can't give you any insight as to where to go next. I just wanted to tell you we are here supporting you in whatever you do and hoping you chose the path that will make you and your Hubby happy. Hugz!

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    1. Thanks, Emily - I hope we choose a path that will make us both feel happy, too!

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  8. I think we all have to go through this at some point. Question more, further testing, jump back in or quit for a while. It's a tough decision. Take your time deciding and eventually you will come to the right decision for you and hubby. Having things go unexplained is really painful and doesn't inspire confidence to move forward. I'm sorry you are having to go through all of this.

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  9. While I don't have any great advice, I do know that for me, miscarriage after stillbirth has been brutal. The miscarriage has shaken my confidence in a whole new way. I think without really realizing it, I felt we were *owed* a successful pregnancy after all we'd been through. Experiencing another miscarriage just reinforces how shitty and random and unfair it all really is. I hope that some next steps, whatever they are, start to take shape for you or that you can feel a bit of peace about not knowing...

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    1. This exactly. I struggle so much with this - actually the topic of a future post - the notion of being owed or deserving something and how ridiculously hard it is to throw that idea out the window, as illogical as it might be, when with so many things in life, we work hard for something, hard work pays off, we get it. For me, anyway, that is pretty much all I ever knew until infertility and pregnancy loss.

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  10. I feel for you with all my heart... all those options are so hard but there may not be any harm in option 1 - with an opinion of what can be offered in a new country. The uncertaintly of IF and all that comes with ART is heartbreaking. Uncertainty is the one thing that I find hardest to deal with. Love to you always xoxo

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    1. Thanks, DB. You've been in my thoughts a lot lately.

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  11. Wishing you peace as you reach a decision on which path(s) to follow.

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  12. 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 felt this, in so far as I can without having gone through fertility treatment, because I just didn't know if I could carry a baby to viability. I had my twins so early and then I had an early miscarriage after that. It's a cruel place to be in and I'm so very sorry you find yourself here.

    As DandelionBreeze says, it is the uncertainty that can be so awfully hard to take. I hope that you and your husband can reach a decision on the way forward and I wish you the very, very best with any path that you decided to pursue.

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    1. Thanks, Catherine. Yes - the uncertainty has always been one of the things I have struggled with most. I always say if I could know with certainty that we would some day get that elusive happy ending, even if it would mean x years or x ivfs or whatever, it would be much easier to go along with with the idea that I was pacing myself in a marathon, rather than that sinking feeling that no matter what I do, maybe it's all for naught.

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  13. Hi I haven't replied before, but started following your thread quiet recently.Firstly I would like to offer my deepest sympathy on the loss of your twins Aminadav and Naava...

    Our stories are very similar. I lost my twins in December at 24.5 weeks Baby Luke was stillborn and Baby Arthur lived in neonatal for 2 weeks and 1 day... The twins were conceived on my third IVF. I also had two cancelled IVF's. I was eager to get going again and in May I did A FET I had a BFN, I went straight into another FET in July and got a BFN yesterday. Its so hard to be grieving for the twins and for the failed cycles.. I am now too at a cross roads and I am asking what to do next. I write on a forum and the women there suggested the immune testing. I have tried researching on Internet but not having any luck.. I had a laparoscopy before starting IVF they found nothing.

    I already changed clinics once and had the pregnancy with the twins so I do think it is a good idea to try a different clinic if only for one go then I guess there is no what if's...

    My DH is totally against adoption as well.. I have been thinking about it and feel it would be unfair to bring a child into a family when one parent doesn't want it.. As we have been at this now for years age is also a major factor now...

    I will try one more fresh cycle but need to heal after this failed cycle.. I hope to try again in October but would like to find out more about immune bloods first.. I read a quote on glow in the woods by Thomas Edison and thought it was fitted my situation.. 'Our weakness lies in giving up. The most certain way to succeed is to always try one more time'..

    I do hope you find your answer, I think you will when you feel ready xx

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  14. Thank you so much, Mika. I am so sorry for the loss of Luke and Arthur. I will be interested to hear what you decide re: immune testing since as you know, it is an avenue we are considering as well. I am wishing you lots of luck and clarity as you move forward.

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