A new day, a new doctor

First of all, I want to start by saying thank you to all of you amazing ladies out there who have posted such thoughtful and helpful comments this last week. I feel very different this time around, and I think a big part of that is having so much support. I know how many people go through infertility and loss with little to no support, and I feel like I’m beyond lucky.

Emotionally I might be doing pretty well (at least for now), but physically I’m doing HORRIBLY. The nausea has hit full force and I’m barely keeping it together trying to function. It starts before I get out of bed in the morning, as I’m woken up by waves of nausea. It’s always worst when my stomach is empty, so first thing in the morning is a huge struggle. I force myself out of bed and brush my teeth half doubled over (because it’s worse when I’m standing up straight). Somehow I make it through a shower (the heat has a negative effect too) and to the kitchen to eat breakfast. I always feel a little better with a full stomach, but it only lasts for an hour or two. No matter how much I eat, the nausea will be back an hour or two later, and I have the choice to stuff myself with more food and face gaining enormous amounts of weight, or suffer. I’ve been falling on the side of stuffing myself with more food, consequences be damned.

If I could just be curled up on a couch all day (like I am today), I think I could manage okay. But having to get dressed and go to work, where I have to pretend everything is totally peachy, is really pushing me to my limit. I count every single minute until the day is over, then start dreading the next day. I’ve finished 4 of 10 work days before my next ultrasound, and I’m barely holding it together. I’m not sure what I’d do if I wasn’t working part time, maybe I’d have to consider unpaid leave.

I have to say though, the hardest part of feeling sick all the time is that I’m SO ANGRY that I feel this way. I’ve had to do this FIVE times!! Is it not unfair enough that I have to have miscarriage after miscarriage, do I also have to be punished with months and months of feeling like I have the flu too? I’ve done the equivalent of a full pregnancy’s worth of first trimesters, feeling more nauseous than most pregnant women ever feel. If I actually had the flu I could stay home, or if I was a normal pregnant woman I could get away with telling people. But instead I have to pretend everything is f*ing fine, and go about my life like nothing is wrong. It just feels like kicking me over and over when I’m already down.

In less angry news, I’ve spent a lot of time over the last few days thinking about my options, however few, going forward. As so many of you commented, there are options out there, and the question for me always goes back to just how much time and money am I willing to risk on a longshot? Adoption has always been our backup option, our plan B. And the thing about adoption is it’s close to a sure bet. It’s expensive and seems insanely hard, but we know that we could do it and in the end we would have a child. We’ve already done a lot of research, so we know what agency we would probably use, how much it would cost (we could set an upper limit), and most of what’s involved in the process. It would also feel like we were taking control finally, after 3 years of having absolutely no control over anything. Plan B doesn’t have to be the end of the world, maybe (maybe) I could even get excited about it eventually.

BUT. I can’t do any of that while I’m bogged down by unanswered questions. I’ve always said if I had some sort of explanation for my losses I could start to move on. When you don’t know whats wrong, it feels like an answer or a solution could be right around the corner. What if I just asked one more question? What if we did just one more test? What if we saw just one more doctor? Maybe the answer is just sitting there waiting to be found, and all the horror of the past 3 years will melt away as we suddenly have a miracle cure. There are always more articles, more blogs, to read and get ideas about possible explanations. I could truly fall down the rabbit hole and never come out chasing answers that ultimately might never exist. I’m already feeling the frustration of the having wasted this last full year on a single attempt. If we’d moved on after our loss last December, like we said we would, we could have a child by now. So, as badly as I want answers, I feel like I need to be careful not to be too drawn in to the possibility that one more (test/doctor/treatment/attempt) could be the magical solution. It’s a fine line, because I don’t want to give up too early when there are valid things left to try, but I don’t want to waste the rest of my life chasing a hopeless dream either.

With that in mind, we have decided to see just one more doctor. We made an appointment with a doctor who is a definite proponent of the embryoscopy procedure. We were super lucky to get in to see him so quickly, our appointment is next Thursday (the 12th), so it won’t be too late to still do embryoscopy if he convinces us there is information to be had from it. From his website, it’s clear that he has a different opinion about RPL than Dr. O., and as much as I respect Dr. O, I’m beyond fed up with the attitude that we have to ‘just keep trying’ because there are no more answers to be had. Ultimately he may be right, but I need to at least try asking one more person. I strongly suspect that this new doctor (Dr. A), will have something different to say, and then the question will become, who do we beleive? When all you have to go on is one person’s opinion versus another person’s opinion, how do you know who to trust? I guess we’ll cross that bridge when we get there.

So, today what I’m working on is the list of questions we want to ask Dr. A. The bottomline question is, what do you think our options are? But, to get to that point, my hope is that we can look at the ‘evidence’ so to speak, in the form of my history and the details of my losses, and see if they provide any clues to the type of problem we’re dealing with. From what I’ve heard/read of him so far, I think that he may be the type of doctor who is willing to think things through this way with us, rather than just saying ‘no way to know, just keep trying’.

All of you have been super helpful already by giving me suggestions for things to think/ask about. I’m going to list the ‘evidence’ and questions that I’ve got so far (with your help) below. If you can think of anything else that I should ask about, please let me know. I’m feeling a little more optimistic at the moment, hoping that either we can make some progress with this doctor, or if not, we will feel like we’ve asked all the questions and heard all the opinions there are to hear, and maybe this will help us move on.

Evidence:

  • Strong pattern with almost all losses: bleeding at 5 weeks, heartbeat at 6 weeks, no heartbeat at 8 weeks
  • Very heavy bleeding, starting early- what could be happening so early to start the bleeding?
  • Almost all were missed miscarriages, even by 9 weeks there has never been any sign of anything progressing naturally
  • Almost all embryos looked bad or ‘weird’ in some way on ultrasound (anything from no yolk sac to weird oblong shaped gestational sac)
  • No signs of fever/allergic reaction when pregnant (sometimes thought to be related to immune causes)
  • Very high AMH- most likely not an egg quality issue
  • ‘Wierd’ uterine stuff: asymmetrical lumpy lining with this pregnancy, former very small septum
  • Periovarian mass
  • Very slightly elevated TSH (2.92 pre-pregnancy) and hypothyroid symptoms during pregnancy

Things to ask about:

  • Embryoscopy- will it help us differentiate genetic versus uterine issues? In other words- will it tell us if it’s me or the embyros?
  • Could the bleeding itself be causing the losses (some sort of excessive bleeding issue? failure to clot?)?
  • Could this be a sperm quality issue (e.g. imprinting)? Is there any way to test?
  • Could this be related to my thyroid, even though I’m on thyroid meds now? *more on this another time, I’m feeling totally different this pregnancy, none of the extreme fatigue/low blood pressure/low pulse I’ve had in the past, so it certainly seems like the thyroid med is having an effect. But, the pregnancy is still failing, so it doesn’t seem like that was the cause.
  • In your opinion, without having done embryoscopy, is your impression that this is genetic or uterine (me or the embryos)?
  • Do you agree with us that the statistics about the odds of a successful pregnancy after this many losses don’t really apply to me? This is a tough one, but I feel strongly that my pattern is so strong that without figuring out whats wrong, I will never have a successful pregnancy. I think the statistics are more relevant for people who have had different kinds of losses, or something different has happened each time.
  • Should we do more thorough immune testing?
  • And finally, what do you think is our best chance of a successful pregnancy? If the answer to this is do nothing, just keep trying, then we have our answer. Adoption it is.

Anything else you guys can think of???

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21 thoughts on “A new day, a new doctor

  1. i love your list of questions, etc! It is such a good idea to go in with them written down because if you are like me, I become like a deer in headlights when I walk into those rooms :/ I’m saying lots of prayers that you get the answers you need. I know that if God placed the desire in your heart to have your own children then you will have your own children. The devil is trying to steal this blessing away from you. Don’t allow him. He is a jerk 🙂 I recently read a story in a book the other day and posted a blog about it….i have attached the link. I hope it encourages you to keep moving forward. (I am glad you are seeing a new doctor.)hugs to you!!!

    http://waitingforbabybird.com/2013/12/05/im-not-ready-to-throw-in-the-towel/

  2. That’s a great list! I think you have covered a lot of territory. I can’t think of anything to add….except how sorry I am that you are experiencing that nausea. I relate very well. It is the WORST. I’m so sorry. (By the way, in case it’s important: Dr S says imprinting errors are 50/50–could be the guy, could be the female.)

  3. Good list–and I’m frustrated that I don’t know the answers (I may have found a new obsession to research). I feel like there’s an answer out there for you. You didn’t mention it: is a gestational carrier something you’re considering? I hate that you’re going through this, but I feel optimistic that your new doc will be able to offer possible theories/explanations–I’m not a fan of the answer “we don’t know and there’s no point in finding out”. XO

    • Yeah, tell me about it, if one more person says ‘just keep trying’ as a solution I might lose it. Surrogacy is pretty much a no go beacause of the cost unfortunately :(. I looked in to it enough to see it was 2 to 3 times more than adoption, and then gave up.

  4. I love your approach to this. Very matter of fact, and I think that is great. I am so sorry you are feeling so sick, though. Totally stinks, and I would be just as angry as you are about it. So not fair. I don’t know too much about all of the issues/questions you listed above, but it seems so thorough to me, which is awesome. I am truly praying you get a better prognosis, and you would like you are ready for Plan B. I def. can think better and more optimistically when I make my goal ‘to have a family’ vs ‘to get pregnant and have a birth a baby.’ Hugs, friend.

    • Thank you. You’re right, even though I desperately want to do it through pregnancy, the ultimate goal is definitely to have a family, so if I have to give up pregnancy to do it, it’s not the end of the world. We’ll see.

  5. when it comes to the “chances” of missing again I’m skeptical about their theories. I had a perfectly normal pregnancy the first time, then had four miscarriages (one was a blighted ovum). each time, except for the blighted ovum , bleeding started at about five weeks. I got pregnant in June and my doctor put me on progesterone and I’m 31 weeks along now. whatever your issue is, I don’t believe that after all the miscarriages you’ll never have a healthy baby (obviously there are extenuating circumstances) the question is how long can your body and emotions handle the trauma. you’re right, four or more miscarriages seems grim, but I don’t think impossible.

  6. I love your list. I’m glad you’re seeking a second opinion. I hope that, maybe, he as some insight to offer. I totally understand that fine line, too. After three losses and one failed cycle, this IVF was our last shot. There’s only so much that your body, and your heart, can take. Sending love.

  7. I think this is the most frustrating part. Everyone keeps telling us that there is no reason for these miscarriages, but how much are we suppose to endure, physically and mentally? The thing that irks me is when people say, “Well, if you really want to become a mom, you’ll keep doing it until you have one.” Really? Have you gone through this pain and agony? When you are pregnant, you constantly worry and have this fear that never goes away. I really think people have the best intentions, but unless you’re in the situation, it’s very difficult to comprehend.

    Sending you hugs!

    • So true! I hate the attitude that if we don’t keep going for ever and ever we must be weak or not want it badly enough. If I believed it was possible I could endure anything necessary. I’m not weak just because I don’t want to spend my entire life chasing something that may never happen. You’re right that people mean it well, it’s just hard to hear.

  8. I totally know how you feel about dreading work and then pretending everything was okay. I had three losses during the school year last year and I just couldn’t take it anymore.. I guess that’s why I had to quit. I also wanted to tell you when I first started seeing my RE, I said, “I know that sometimes you can’t figure out what’s happening and maybe we’ll never know, but..” He completely interrupted me and said, “There is always a reason, you just have to find it.” I knew he was the right doctor when he said that. I do think there is a reason and you just have to find it. I think your list is great, but if I think of anything in the future, before the 12th I’ll let you know. I’m so glad you were able to get in so early! Thinking about you and I hope this doctor is a good one.

    • I definitely get why you’d quit. I’m only just barely making it because I only work 24 hrs a week.

      That’s interesting that your doctor said there’s always a reason. It just goes to show how different doctors see RPL totally differently. I’m really hoping the new doctor will have more of that attitude, yours sounds pretty great.

  9. I agree with what the other ladies have been saying, I’m sure your current doctor is great, but it doesn’t sit well with me that he’s just saying to keep trying and not offering you any options. There is an explanation, he just doesn’t know it. That doesn’t mean someone else doesn’t have answers. Praying the new doctor will have them. Thinking about you constantly.

  10. I’m so glad you’re seeking another opinion. Really keen to hear what they say about the embryoscopy too. And I’m totally impressed by your list hun, very thorough. Press them as much as you can until you feel satisfied by the answers. You are prepared and know your stuff.

    It’s so cruel that you are suffering physically, it’s so unfair. And I completely get the shirade that has become your life at work. I’m finding it so hard to pretend. It makes me so angry that we have to pretend. I’m thinking of you all the time, sending you my love xx

  11. Hoping that this new doctor has some answers for you. It’s good to be seeking another opinion – a fresh pair of eyes and brain is a helpful thing. I’m sort of floored by your first doctor telling you to just keep trying – 5 miscarriages all with a strong pattern seems to indicate something that should be checked out thoroughly.

    Thinking of you and hoping you get some answers.

    • Thanks, I really appreciate it. I agree, the just keep trying attitude is driving me insane. But in case I wasn’t clear about it, I have been investigated thoroughly (in his opinion). It’s not that he’s refusing to do testing, I’ve had all the standard well accepted tests, he just doesn’t think there are any more tests left worth doing. That’s where another doctor will maybe have a different opinion, so I guess we’ll see.

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