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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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.

 

Where do we go from here?

redWhen I tell people I’ve had 4 miscarriages, I generally get a version of the same reaction. “Well at least you can get pregnant, so if you keep trying, it’ll work eventually”, or “why not just keep trying and see what happens”?, or worse yet, “well, they’re all early losses, what’s the big deal? Just don’t get your hopes up”. These reactions drive me completely insane, and so I feel the need to put out there into the world the reasons why it IS a big deal, and why I don’t want to (can’t?) just keep trying forever until it works (if it ever does).

First of all, although its not actually my primary reason anymore, there is the horrible roller coaster of emotions. When you find out you’re pregnant, even when you know miscarriage is a (strong) possibility, it’s IMPOSSIBLE not to have thoughts of tiny pink dresses and new baby smell, and whatever other form of torture you prefer. No matter how much of a wall you put up to protect yourself, the hope insidiously seeps in until suddenly your discussing names and plans for day care, as irrational as you know it is. It is impossible to forget because your body is suddenly different and reminding you of its changed state every couple minutes. I would kill to be one of those people who doesn’t know they’re pregnant until week 8. But no, I get every pregnancy symptom. So every cramp, every dizzy spell, every time I feel nauseous, I’m reminded that yes, I’m pregnant. I can’t  just choose not to think about it to keep my hopes in check. My brain becomes a hamster-wheel rotating the same thoughts around and around and around but getting nowhere. It’s maddening. Then of course when its clear that it’s going to be another miscarriage, the hamster wheel goes away but I get depressed and spend a few months struggling to force myself out of bed in the morning.

Secondly there are the pregnancy symptoms themselves. As I said, I’m not in the lucky group of women for whom pregnancy is a beautiful process. I become a complete and total mess (independent of my emotional state even) by week 6 or 7. The symptoms start about 4 days before my missed period, and its all down hill from there. There’s the little stuff like peeing a lot and sore boobs. Then there’s the slightly more annoying, but still handle-able stuff like cramping and exhaustion. All of this is fair, and honestly really welcome because its reassuring that things are still plugging along. The parts I don’t handle well are the nausea, low blood pressure, and general weakness. From about 5 weeks onward, I start to feel nauseous just about all the time. It’s rarely bad enough that I could actually throw up, but it’s just constantly there distracting me from whatever productive thing I’m trying to do. At first you think, okay, I’ll just have a cracker and power through. But after two weeks of it, I’m ready to curl up in a ball on the couch and avoid all human contact. Along with this is the flu-like weakness and low blood pressure. I would love to hear if anyone else has had this problem, because I don’t think it’s normal in early pregnancy. It’s not really tiredness or even fatigue, it’s more like your body is too heavy to hold up. It gets to the point where I’m sitting down to brush my teeth or shower because I feel like I can’t stand up that long. Similarly, my blood pressure gets so low that every time I stand up I loose vision for about 10 seconds and I have to grab a door frame or piece of furniture so I don’t fall over. Granted this happens to me sometimes when I’m not pregnant, I do have low blood pressure in general, but not to the point where it’s every single time I stand up and I regularly almost pass out.

Throw in some bad acne, weight gain (mostly because of the nausea and difficulty exercising), and gushing blood completely out of the blue, and this is how I’ve spent 7 months out of the last 2.5 years. Needless to say, it’s nearly impossible to continue to go through every day life as normal. Its a huge struggle to keep up productivity with work, get any form of exercise, and have normal interactions with other human beings. But I can’t just stop my life for two months out of every six months.

I do want to say though, I’ve never had to deal with these symptoms in a normal pregnancy. That is, I’ve always known that things were not going well 5 weeks in when I start to bleed, which is not coincidentally when the symptoms really start to bug me. I’m sure my psychological state adds to how bad I interpret them to be, and I keep telling myself if I had a normal pregnancy I wouldn’t be nearly as bothered by it. In fact, I’ve made pacts with myself that if I can JUST have ONE normal pregnancy, I won’t dare complain, even for a second. I’ll grin and bear it and say thanks afterwards. Fairly sure I wouldn’t be able to stick to that if it came down to it, but I’d try :).

Thirdly, there is the cost and physical risk of having surgery over and over. I’ve never ever had a pregnancy end naturally, or show any signs that it was going to do so. Presumably it would have happened eventually if we had waited long enough, but the sac always continued to grow even after the embryo was gone, so my Doc felt that it was not smart to wait and let it keep growing indefinitely. The longer you wait the greater the risk of excessive bleeding, so it was always safer to get things moving sooner rather than later. I did have the option of chemically bringing on the miscarriage once or twice when it was still early enough, but the idea of that is horrific to me and surgery was always the easiest option in my mind.

And finally, the biggest reason not to keep trying for ever and ever is that there is ABSOLUTELY  no reason to think it will ever work. Statistically the odds are supposedly in our favor, with idiopathic recurrent pregnancy loss in a 30 year old, even with no treatment at all there is supposedly a 40-50% chance of success with the next pregnancy. The problem with that statistic is that when you don’t know whats causing the problem, there’s no reason to think that the statistic is relevant. Maybe the successful women in the studies had RPL for a different reason than I do. Maybe all the ones who were not successful actually had the same underlying problem I do, and the odds are really 0%. All of my pregnancies have been extremely similar (bleeding at 5 weeks, heartbeat at 6 weeks, no heartbeat at 8 weeks) despite apparent differences in the embryos (some looked normal, some didn’t), so it just doesn’t seem like there’s any reason to think it will be different next time.

So, there are the reasons why I don’t want to keep trying. G and I have talked seriously about adoption, and even tried to move forward. And yet, here I am still trying to get pregnant. There is really only one reason why we haven’t stopped, despite all those reasons. I have no idea how to accept that its over and move on. I have no idea how to wrap my brain around the fact that I may never feel my baby kicking inside me, never hold her for the first time after giving birth, never see what the combination of G and I would look like together. How do you accept it and move on, when everyone else gets to have it all? Everyone else gets the joy of pregnancy AND the kids. It’s just so unfair and that isn’t going to go away even if I give up trying and move on.