All out of options.

Without further ado, in the words of Dr. O, the outcome of our ultrasound today was “not optimistic”. Coming from him (the eternal optimist), this is basically the same as saying it’s hopeless. At 5w6d, there was a yolk sac, but no visible fetal pole. In a normal person, this could just be chalked up to it being too early. But for me, it’s ‘not optimistic’. There were some other lovely findings too, including a ‘periovarian mass’ and a weird asymmetrical thickening of my endometrium. His interpretation of these was they are ‘interesting’, and we shouldn’t ignore them. It doesn’t appear that they’re related to the pregnancy though (or what’s wrong with it), so it’s hard for me to care too much about them right now. He tried to reassure me that the mass ‘probably wasn’t cancer’ (probably?), but even that didn’t get a rise out of me. If it’s not related to figuring out what the hell is wrong with my ability to reproduce, it’s not much on my radar right now.

Honestly, I was super relieved to hear that the pregnancy was not totally normal. It sounds counter-intuitive, but I was really worried they were going to tell us that it looked totally normal and we shouldn’t give up hope yet. Then I would spend the next two weeks letting the hope sink in, and be extra special crushed when it (of course) wasn’t. Instead, now I get to spend the next two weeks before the next ultrasound feeling absolutely miserable with nausea (did I mention it’s awful now??) and dragging my feet to muster the energy to act like a normal human being at work all day. In fact, right after the appointment today I had to go back to work and stare at my computer screen, interact with other human beings, and basically pretend not to be a person-shaped ball of anger and frustration. That was fun.

Up until today, my emotions have been conspicuously absent. I went from being an emotional wreck in week 4 to being completely numb and emotionless the moment I started bleeding. I didn’t cry, I didn’t obsess over it, it just….was. But I knew that couldn’t last. And sure enough, my emotions chose the middle of our appointment with Dr. O to reappear. One minute I’m asking him logical rational questions, and the next my lips are shaking and I can’t eek out words. The thing is, I’d been keeping it together up to that point mostly by thinking about what comes next. As soon as I read the article about embryoscopy, the idea has been growing in my mind that we might be able to figure out whether my problem is uterine or genetic (assuming those are the main two options). It was a quick jump from there to, well if it’s genetic, we have options! We can try donor egg, sperm, or more likely, donor embryo. If it’s just our genetics screwing us over, we can fix that by throwing some other genes into the mix! The feeling of finally having options gave me such a feeling of lightness, it almost drowned out the pain of another loss.

I should have known better than to get my hopes up though (haven’t I learned by now???). We asked Dr. O about the possibility of doing embryoscopy, and he was not exactly supportive. He said he would be willing to do it if we really wanted to (and he’s done it before), but he doesn’t see any point. Basically, he thinks that it’s almost inevitable that our embryo would be developmentally abnormal, because, (duh) it didn’t develop. He doesn’t agree with the papers that I’ve read saying that abnormal development implies a genetic problem (karyotypic or otherwise). He feels that a uterine factor could cause the same abnormal development as a genetic factor. So, it wouldn’t give us any information if we did it. In fact, when really really pressed, he said he thinks my problem (and most people’s problems for that matter) are uterine, not genetic. This is just an opinion of course (he admits there’s no way to know for sure), but ultimately if we decided to do something like donor embryo it would have to be just because we beleive the problem is genetic not uterine. In other words, it would be an enormous roll of the dice.

So what’s wrong with rolling the dice? We’ve already done it 7 times, right? In my mind the difference is that with donor embryo (or donor egg, or donor sperm), it’s not just us involved anymore. The genetic parent’s of the embryos we’d receive worked insanely hard to create them, wanted them very badly, and donated them out of the generous hope that they would have a chance at life. Who am I to take their (probably perfectly viable) embryos and toss them in to my death trap of a uterus? It’s not a risk I’m comfortable taking unless someone can give me a decent reason to beleive it will work.

Given that, I’m now feeling like doors are very quickly being slammed shut in my face. Where last month there were at least a few doors left open (trying on our own, donor embryo), these are quickly becoming obsolete. I’m almost completely sure (lets say 99.5%) that we won’t be trying again on our own. I don’t care what the statistics say, I no longer beleive that I am capable of creating and/or carrying a viable pregnancy. Ever. I simply don’t beleive it anymore. The pattern is too strong. Every time I get pregnant it will happen the same way, unless we figure out what’s causing the problem and treat it.

Dr. O reiterated that there are simply no  more tests or treatments available though, and so trying on our own is pretty much out. If donor embryo is out too, we are at the end of our rope. The words I was trying to get out through the tears to Dr. O were “I just wish we had some sort of option left, we just want to have some chance”. So, I guess it’s the time we’ve been dreading. The time I spent years going through more wasted cycles and wasted pregnancies to avoid. The time when we have to accept that it is what it is and move on to the only option left: adoption. Now if I could just figure out how the hell to accept that, that’d be awesome.

 

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35 thoughts on “All out of options.

  1. I’m so so sorry. I don’t really know what to say. If it’s a uterine problem and not a genetic problem can you guys look into surrogacy? Not sure how that all works where you are. I’m so sorry you have to go through this.

  2. Oh hon, my heart aches for you. I was really hoping you would get good news today and it would continue to get better and better. Why is this so much to hope for? It’s so unfair! I’m so angry at those who get pregnant without even thinking (and completely take it for granted) and others have to suffer loss after loss. It’s just wrong. I know you’re processing a lot right now and are feeling hopeless, but please know you still have options. After my last loss, we sent the fetal tissues for chromosomal testing and found there was indeed a chromosomal abnormality. It was a rare form of Trisomy. Although, it was hard to hear that news, I was actually relieved because it was a real answer. We won’t know for certain if the others were also abnormal because we never tested them, but my RE believes it’s very likely that they were. My husband and I both came back normal after genetic testing, but my RE believes our miscarriages were likely all abnormal as a result of poor egg quality. He explained that all eggs have 26 chromosomes and at the time of ovulation, the eggs shed 13 chromosomes to take 13 from the sperm, but due to advanced maternal age and sometimes unexplained reasons (I’m 36 so not overly advanced age), our eggs don’t function properly and the shedding process of getting rid of the 13 chromosomes doesn’t happen correctly and causes abnormal embryos. Sometimes the sperm can contribute to this, but since my husband’s sperm analysis was normal, we know that’s not likely the case for us. My RE specializes in PGD and stays on top of the research so I really trust what he’s saying. So this is why, we decided to move forward with IVF and PGD. It has been quite an emotional roller coaster to get to this point and we may not have any normal embryos after testing, which will be devastating, but at least we won’t be trying blindly on our own anymore, and having more “unexplained losses”. IVF and PGD are very expensive, and the fertility meds are not fun, but if this works, I really think it will be worth it.

    I know this is a lot to consider and absorb right now, but I just wanted to tell you a little more about the decisions we made so you know you have options. I’m always here if you want to talk or find out more about PGD or anything. Praying you find some real answers. Big hug.

    • I know, it seems like it shouldn’t be too much to ask to at least get some answers even if we can’t solve the problem. We’ve asked about PGD, but unfortunately (or fortunately, depending on how you look at it) the two embryos we’ve tested have both come back normal male (no trisomies, or other karyotype problems). So PGD wouldn’t really help because even if we suspected it was a genetic problem, we wouldn’t know what that problem was. PGD only works if you know what your looking for :(.

      • Oh hon. I’m so sorry. I can only imagine how difficult it must have been to find out there wasn’t a chromosomal abnormality and not get any answers. I can understand why you’re pushing for the embryoscopy. It sounds like your Dr. will do whatever you ask, so that’s good. I pray you get some real answers soon! Thinking about you lots!

  3. My heart is breaking. This is so horrible, I hate this. I am so so sorry lovely. Everything you’ve said I can relate to completely and I hate you are feeling this way. I know about being relieved at this point because otherwise the let down later would consume you. Having to return to work to be a normal functioning person is awful. And I feel those doors closing too. Feeling like you’d be throwing away perfectly normal embryos if you tried donation, it feels reckless doesn’t it. We’re between a rock and a hard place. It’s all too much.
    I want to fix this so badly for you, I feel like there have got to be answers out there. Would you consider asking another RE about an embryoscopy? What about an immunologist?
    Holding your hand and sending love, I’m here for you and living your pain. xx

    • Yep, I know you know what I mean :(. I haven’t had a chance to write about it yet, but we are probably going to see one more doctor for yet another opinion. The problem of course is that if he has a different opinion, we’ll have two opposing opinions to consider and who knows which is the right one. It’s worth seeing what one more person has to say though.

  4. I hate this, I’m so sorry. I wish we could all be together in times like these, that I could actually give you a hug, and we could scream and cry together. I know you’re not that optimistic right now, but I’m still holding out hope for you.

  5. I am soo sorry! I can’t imagine how you must feel and I don’t think I can say the right words to make it better. But I remembered these quotes while I was reading your blog.

    “Fall seven times, get up eight.” ~Japanese Proverb

    “Don’t be discouraged. It’s often the last key in the bunch that opens the lock.” ~Anonymous

    With God ALL things are possible (luke 1:37). It’s usually when we have no options left and we just throw our hands up in the air and give it completely to Him that He can show up and show out. Don’t give up. Don’t lose hope. Don’t quit believing that you will have your own children. I am saying prayers for you right now that you will be holding your own children one day. xoxoxo

    • Thanks, I totally agree. where is the freaking research to figure this stuff out anyway? I’m starting to feel like we’re the ugly step child of the medical community. the attitude is just keep trying, it’ll work eventually, as if that lets them off the hook for figuring out whats goign on.

  6. Damn it. I am so angry for you! This is just unbelievably not fair. I was really surprised to read what your doctor said about most pregnancy losses being caused by uterine rather than genetic problems. I really always thought it was the other way around. As someone with a screwed up uterus (septate), I’ve always thought my uterus was the culprit in my particular case, but everything I’ve read seems to indicate that most early losses are caused by genetic abnormalities. It just doesn’t sound quite right to me that most cases are due to uterine problems. Not saying your doctor is wrong, but just maybe that it’s worth a second opinion. I will be thinking of you and hoping for brighter days ahead. You sound like a lovely person and you deserve to have good things.

    • Thank you, that means so much and I really appreciate the support. I think I explained that badly though, when he said most people’s problems were uterine not genetic, he was specifically talking about people with unexplained recurrent pregnancy loss, not miscarriages in general. Definitely most miscarriages in general are caused by genetic (and specifically chromosomal abnormalities). But for those of us who don’t fall into that category (unexplained losses of embryos with normal karyotypes), he apparently believes the cause is uterine. I’m not entirely sure I agree, and I think we will probably get another opinion just to cover all the bases we can. Ultimately it will always be just a matter of opinion though, since there’s no way to test :(.

  7. Darlin. God. I’m terribly sorry. You know I so relate to this post.

    Am refamiliarizing myself with adoption (something we considered in the beginning so have done a little bit of research). I don’t know what is in store for us, either, but no matter what—I am with you, and I will do what I can to help you parse out the options (treatments, adoption, etc) and deal with the emotions.

    Surrogacy is out of our price range, too. It sounds like if you could afford it this might be one way….I’m going to post some stuff on my blog soon about grant/loan opportunities out there. (I myself could never get my act together enough to apply for any.)

    Please forgive me if you have already addressed this and I missed it (my brain’s a little cluttered right now)—have any of your doctors mentioned the possibility of it being the sperm, or suggested donor sperm?

    You are not alone!! Hugging you.

    • Thank you, I know you totally get this.

      I haven’t directly asked about sperm as a potential problem, but given everything else he’s said, I’m positive Dr. O would say that’s definitely not it. I’m not sure what I beleive at this point. I think G and I have sort of agreed though that if one of us wasn’t going to be genetically related to our child, we’d probably rather just go with donor embryo. It feels fairer somehow, and a safer bet if we don’t know for sure which one of us is the problem.

  8. So, so very sorry. This just sucks, I was hoping this one was it for you. I can so relate, especially to losing genetically normal babies.

    Have you considered any immune testing or treatment? You can email me if you’d like more info- I’ve looked into a lot about it. Obviously, lots of REs don’t buy into it, but I think when it’s not genetic, there’s a good chance that immunologic treatment may help.

    Be gentle with yourself- hugs.

    • I know you can relate :(. I’ve had all the well accepted immunological tests, but not the more ‘iffy’ stuff. I’m on the fence about it, especially because I don’t think my miscarriages really fit the pattern of an immunological problem anyway, but who knows. It’s so so hard to know that there might be options out there and not try them, so I’m not sure what the right thing is to do at this point.

      • The only ‘right’ thing to do is what you and your husband feel is ‘right’. There is nothing good or normal or right through the process of RPL- our response to it just has to be personal.

        I didn’t think that my losses fit an immunological pattern either- my first 5 were all early and before heartbeats and I really had no idea how a loss at 16 weeks could be remotely related. The RI basically said that everything about implantation and the beginning of pregnancy is all immunology- that kind of made sense to me. It is all how our immune system and immune cells in the uterus are accepting and supporting the embryo.

        I know some of the testing seems out there- like HLA matches have not clearly been proven. But other things about T-helpers and recruiting more positive immune cells have been showing some positive studies.

        I guess I just figure when doctors don’t really know, how can they be so quick to turn down theories of people who are at least trying to think outside the box? I don’t accept that I’ve had 6 babies die (at least three we know were genetically normal) and the doctor seems ok with shooting down any possible explanation just because he may not have researched or tried to understand the immunology.

        But now I’m getting too into my opinion and I didn’t want to do that! Whatever you decide I hope you have peace with it and it feels ‘right’ to you. And it may not be immediately, but hopefully down the line it really is! Hugs

  9. Oh, friend. I am so, so sorry about the doctor’s news. Totally, totally sucks. Ugh. It shouldn’t be this hard, and I hate that you are having to walk through this. I hope you will get a second opinion, and I am praying that a door of HOPE opens for you, that all is not lost. I wish I could take this away for you…we all would rescue you if we could. We are with you in this, though…Thinking of you and sending hugs and prayers…

  10. What sort of uterine problem is he referring to? I’m assuming you’ve had all the tests done and everything was normal. So, why does he think there’s something in the uterus causing this? I’m very skeptical of claims being made without the research to back it up.

    While our IF was male-factor, our RPL was unexplained. No uterine abnormalities, all tests normal. We did two things in our Hail-Mary cycle: half-donor sperm (like you said, changing up the genetics) and simply rolling the dice one more time (the eventually one will stick method). We transferred one donor and one DH. One stuck, though we will likely never know which one (we don’t plan on doing DNA testing after the baby is born). No one really links miscarriages with sperm, but I’m convinced it played a role for us.

    I would definitely get a second opinion. We finally had success with our fifth RE!

    • Thanks for the info. I do think we’ll probably see one more doctor, just to cover all the bases. I really want to beleive the problem is genetic because then something like donor sperm or embryo would work, but it just feels like such a huge risk. If another doctor tells us what we want to hear (that donor embryo could/would work) we may be willing to take the risk, but I guess we’ll have to see. To be fair, I really had to push Dr. O to say that he thought it was uterine, he didn’t want to give an answer specifically because he doesn’t have any evidence to back it up. He admits he has no clue what kind of uterine problem it would be, he feels that whatever my problem is, it can’t be tested for currently.

      • I kind of feel like that’s where Dr. Shapiro will be (where Dr. O is) if our next transfer doesn’t work. The first thing he said to me during our phone consult was: “I’m going to cut to the chase: with the loss of a normal karyotype male, we could be looking at something that isn’t currently discoverable. 50 – 55% reasons for pregnancy loss are undiscoverable and untreatable.” Ugh. That’s just great.

        But Jo has been really helpful in bringing sperm-issues to light….I’ve always felt in my gut that not enough is known about, written about, understood about the role sperm plays. Where is the research? I can’t find much. I can’t help but connect this to the culture we live in (not to get too political, and won’t do). I have suspicions that more about the role of sperm will become known in the future. But that doesn’t help us now.):

        Another area of research that Dr. S says has been developed only in the past year is that of *imprinting errors*—developmental/genetic errors that happen early in embryo development that cannot be detected via karyotype testing at this time. In fact, we cannot currently test for imprinting errors at all–but they lead to faulty embryo development and miscarriage. All we know is that these errors definitely happen—and the earlier errors occur during meiosis and are maternal contribution. (I *think* this falls in line with what Jo has described in comments on my blog—that earlier losses are traced to mothers, later to fathers.) If you go to another doctor it might be good to ask what she or he knows about imprinting errors. Because if this is a distinct possibility for you—and from your description of the early losses, it sounds like it could be so—then donor embryo really could be your solution.

        I hope so. XO

      • I am deeply sorry for your losses. I wanted to say something about imprinting errors and sperm. I suspect others’ comments will ring true in future – of little help to any of us now and I, too, suspect a political bias and let’s face it, research is funded and even if researchers would like to study the boys’ contribution to RPL, funders may have other agendas. Science sells, right?

        More than anything, I just wanted to tell you my heart aches for you. I know too well the “not optimistic” diagnosis and I can only hope for a miracle, knowing the chances of that here are slim. I’ll keep hoping anyway, but you need not. The betrayal cuts so deeply when we hope against fate and then face the reality we suspected was going to whack us, after we’d hoped it out of our minds and hearts.

  11. I’m so sorry you are feeling the door closing. My first thought is that, although it sucks to be told that donor embryo may not solve the problem, I do agree with that. I’ve seen it too many times where a doctor says its an egg quality issue, try DE and then the same thing happens. I have a good friend I met through IF and she moved to DE. Couldn’t get them to work after 4 tries. She was fortunate to be able to try a GC. The embryo stuck. It was never my friend’s eggs. There has to be some type of uterine issue that cannot be identified. No one seems to want to find answers-guess it doesn’t make REs money? It’s so devastating to not know why. I’m going to back to read your prior history to see if I can think of any suggestions on immune-treatments I’ve heard others try. No one should have to be a guinea pig to figure this out. Big hugs.

    • If only it was affordable and not time consuming, we could try both surrogacy and donor embryo and we’d have an answer! Or maybe both would fail because we’re just that screwed up :(. Your right though, it’s insanely unfair that we have to test things ourselves because no one has gotten their acts together to figure this sh*t out.

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