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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And another month bites the dust.

I tested yesterday and today, 11 and 12 dpo. BFN. I haven’t felt very pregnant this time around, despite the progesterone, so I sort of knew it was coming. It’s really strange to me that I seem to have such strong symptoms from the progesterone some months and not others.

When I saw the result yesterday I initially felt like throwing things, or breaking something. We tried to stay busy, and as the day went on I began to feel really fragile, like a piece of glass that could shatter at any minute. The worst part of the day was after lunch. G and I decided to go to the zoo (trying to stay busy, but arguably a terrible decision). He dropped me off at the entrance because my hip has been bothering me a lot lately, then went to find parking. It was packed of course, and he ended up driving around looking for a spot for 20 minutes. Then he had to walk another 15 minutes back to the entrance. All this time I was sitting alone, watching all the young families passing by. The zoo is definitely the worst possible place to be by yourself when your feeling lost and baby-less. I tried to keep busy on my phone, but of course I couldn’t help seeing pregnant woman after pregnant woman, baby after baby. I teared up a few times, but (mostly) held it together. Then by last night I was able to joke around with G a little, and felt like I was within sight of normal at least.

So, overall this month has not been as bad as last month. I’m not entirely sure why; maybe the fact that I haven’t felt pregnant has helped, or maybe trying to work through why I’ve been so impatient has helped. I’m glad for this, clearly, but it’s also kind of scary. Part of me feels like if I’m okay with how long this process is taking, it will definitely take longer. More superstition. It also occurred to me yesterday that if we hadn’t made the decision to try one more time after the miscarriage last December, and instead decided to move forward with adoption (I’m definitely going to get around to writing a post about adoption and our issues/thoughts on that front soon), we could very well have a baby by now. This was very hard to think about. I never expected this ‘one more try’ to take so long, and delay us so much. At this point I have no concept of how much longer this ‘one more try’ will take, and then I still have no idea if I’ll even be able to move on at that point either. Since the second miscarriage, every single time we’ve said ‘just one more time’, and we’ve never been able to stick to that decision. If we had, we’d be parents by now and not still suffering. Are we just wasting our whole lives away for no reason? I really have no idea if we’re making the right decisions, or just chasing an impossible dream.

Well, on the the upside the TWW is over.

BFN. Finally tested today (12dpo), and surprisingly it was negative. I say surprisingly because I thought I really knew the symptoms well enough to predict at this point. I mean, I’ve been pregnant at least 6 times, you’d think I could tell by now right?? I definitely felt (and still feel for that matter) sick, but I’m guessing in retrospect it’s just the progesterone. I’ve only been taking this dose for the last three months, and both the previous two months when I felt pregnant I was. And oddly, both times I stopped feeling sick and started spotting before I stopped the progesterone. So who knows?

I keep telling myself its probably better this way. If the thyroid medication is going to have an effect, it would be much better to be taking it already before I’m pregnant. I said a couple times over the past few days that it was just adding an additional level of confusion to the situation to be starting the medication a week or so after implantation, when things could already have started going wrong. If the pregnancy failed again, I would wonder if it was just that we hadn’t started the medication in time. This way, if/when I get pregnant again, if it goes badly I’ll know it wasn’t because the thyroid med hadn’t had a chance to work.

But a negative is still a negative, and it was still extremely hard to see. Another month down the drain, another month with no progress. Another month of announcements and births. As strange as it is to say, if I’m going to have another miscarriage anyway, I just want to get it over with already. Usually it feels like it’s inevitable, and I’m just wasting time getting there.

I had a big glass of wine with dinner, which helped, but I have to fight feeling guilty about it now. Until my period starts I’ll feel like I was irresponsible, or didn’t care enough to just hold out a few more days. In the past I haven’t had a drink until I was positive, but there’s really just no point. If it isn’t positive by now it isn’t going to be positive.

The cost of hope

I’m feeling pretty low tonight. This is the dangerous side of hope. At first you feel so good, but when it’s gone you’re left feeling worse than ever.

Last week, a reader commented on a post where I talked about the symptoms I’ve had when I’m pregnant, and mentioned that it sounded like hypothyroidism (a definite plus for blogging, btw!). Specifically, I was talking about how I start to feel extremely exhausted to the point that just standing up long enough to brush my teeth is enormously hard, and things like breathing take a ton of effort. I know its normal to get tired during pregnancy, but its hard for me to beleive that what I’m describing is just normal pregnancy symptoms. Plus, there are other things too, like a really low body temp, really low blood pressure, and super-duper low pulse. When I’ve been in the hospital waiting for a DnC and hooked up to the machines, every single time my pulse is so low that it sets off the monitors. It hovers around 45-50. The nurses always come over to turn off the monitor and just say, ‘oh your so young and healthy’. Well, as nice as it would be if that were true, it’s just not. I’m no couch potato, but I’m not in the greatest shape. I get winded walking up a flight or two of stairs. So, that just didn’t sit well with me as an explanation.

I’ve looked in to these things before, but I there are other symptoms of hypothyroidism I’ve never had, like scaly skin and a hoarse voice. I just figured I was being a hypochondriac. Plus, by the time I had these symptoms, the pregnancies were already failing. I remember thinking, if I ever have a normal pregnancy I’ll have to ask about these weird symptoms. It never occurred to me that it might be something that was affecting the pregnancy itself. But after I started looking in to it this past weekend, I immediately saw it’s very clearly associated with recurrent pregnancy loss.

And this is where the hope comes in. It all just started to fall in to place. I figured, here is the solution I’ve been looking for all this time. I just wasn’t paying enough attention to the signs, and now that we know what’s going on it’s easy to treat and next time will be totally different. I really tried to keep it in check, I tried to tell myself it was a terrible idea to get this in to my head before I’d even had a test. Plus, even if I do have hypothyroidism when I’m pregnant there’s no way to know that its causing the miscarriages. We could do all kinds of treatment and I could still miscarry. Hope is just such a stupid idea.

Well, yesterday I called my doctor and requested a thyroid test. I was shocked when they called and said I’d had a test (along with all my other tests) over a year ago. I can’t beleive there are tests I don’t even remember having. But, at that point (when I wasn’t pregnant, and wasn’t having symptoms), my TSH (thyroid stimulating hormone, the most common measure of thyroid function) was 2.5. Labs often use a normal range of .5 to 5.0 as normal, but the most up to date standards are to use a range of .3 to 3.0 (that is, greater than 3.0 is potentially indicative of hypothyroidism). Even with the more narrow range though I was well within it last year. So, I figured if I’m only having the problem when I’m pregnant it would have to be going up quite quickly to be having an effect on my pregnancies so early, but maybe that’s possible.

This morning I went in for another test, to get a more current number. At this point, I should also mention that it’s possible that I’m pregnant now. I’m about 10 dpo, and I have all the classic symptoms I usually have at this point. BUT, I had chemical pregnancies the last two months in a row, so it could very well be a false alarm. Point being, when I got my thyroid test this morning, I had in my mind that I could be pregnant and so the levels should be higher. I was hoping it would be really high (weird to be hoping something is really wrong with you), so that we’d know that was definitely what was wrong and could hopefully start a treatment in time for this (not yet even real!) pregnancy to work out. That’s a lot of hoping for a lot of things.

I spent all day on the edge of my chair waiting unrealistically for the phone to ring even though they said it would probably be tomorrow. When it didn’t ring I came home ready to relax after feeling so tense all day. Then a few hours ago a little email popped in to my box, saying I had an update to my health record. I didn’t even know that was an option! Well, there were my results, and they were not what I had hoped for.

My TSH is 2.72, and my T4(free) is 1.07. These are both within the normal range, although my TSH is higher than last year. I think the rational way to interpret these results is that there is no problem and this is not causing my miscarriages. In fact this is basically what my husband said, which got him promptly yelled at. I’m so frustrated with the possibility that I was just totally wrong and got my hopes up for nothing I can’t stand him telling me what I know is probably true.

But my brain is not rational, and this is where its going. So, if my normal number when I’m not pregnant is 2.5, and I’m barely barely pregnant now and its already 2.7, it must be going up fast. And I shouldn’t be surprised that its still normal at this point since I’m not really having symptoms of it right now (although my body temp was 97.2 this morning and I’ve been shivering under a blanket even though its 80 in here). So, if I’m not really having symptoms yet, I shouldn’t be expecting the number to be elevated yet. If we track it, maybe in a week it’ll be elevated. Or, maybe I’m not even pregnant, and so the number especially wouldn’t be elevated yet. But here’s where it gets tricky. If this is actually something that is affecting my pregnancies and I start bleeding around 5 weeks, how could my levels be changing fast enough to affect the pregnancy that fast but we can’t detect it yet? The rational side of me says that’s not likely.

So at this point, the best case scenario is that I’m pregnant and we keep tracking my levels and they go up really fast. But realistically it seems very unlikely that we could treat it fast enough to work for this pregnancy (if it exists). So the best I’ve got now is that I have to be pregnant to diagnose the problem, have another miscarriage and then treat it proactively next time?? Not sure I like that best case scenario, but it’s better than the alternative.

Which is that my hope has all been completely pointless, we still have no idea what the hell is wrong with me, and I will just keep having miscarriages forever.

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.