All the gory details (part 2)

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When I left off last time, I was one miscarriage and two months into the ordeal of trying to have a baby. Although my husband (let’s call him G) and I were devastated when we found out the pregnancy was going to fail, by the time the surgery was over I was relatively okay. I was so glad to be done with the awfulness of the pregnancy symptoms (the hormones have always been pretty rough on me, more on that another time), all I wanted was to skip ahead a few months and try again.

As I was coming out of anesthesia from my first DnC, I have a woozy memory of my OB telling me that during the procedure, she thought she had seen a septum in my uterus . Being the nerd that I am, I responded (probably slurring), “so my mullerian ducts never fully fused??” I taught anatomy and physiology several times, and my first thought was I wonder if I can get a picture to show as an example for my reproductive development lecture? (in case you’re curious, I did get a picture and have used it several times :), without my name attached of course). In any case, the septum was quite small, and the OB wasn’t sure that it would ever cause a problem (it almost definitely didn’t cause that particular miscarriage), but she felt she should send me to an expert to be certain.

I think this was pretty lucky really, because it meant I ended up in a RE’s office very early in the process. Most people have two or three miscarriages before they even see a specialist. Not that we did any tests or treatments for the miscarriage at that point, but it was reassuring to be in ‘good hands’ so to speak, and I never had to deal with the office full of healthy pregnant women again (the importance of this can’t be understated- I would rather shoot myself in the foot than go to a regular OB’s office at this point).

The doctor I was referred to (Dr. O), has been my doctor ever since, and I really do think he’s amazing. He listens to absolutely everything we say and will spend hours talking to his patients (literally, he’s almost always running at least an hour late because of this), and I honestly feel like he cares about us.  He’s extremely conservative in his treatment plans, and doesn’t beleive in doing things unless there’s evidence it works. This meshes well with my science-loving brain; I love data and evidence and significance testing (like I said, I’m a nerd). I hate anecdotal evidence and ‘well such and such worked for my aunt’s sister’s cousin’.

Back to the point though, Dr. O thought that my septum was small enough that it might never cause me a problem, but given the relative risks for and against, it was probably safer to just remove it. So, in the summer of 2011 I had my second surgery in about 5 months. Follow up tests showed that it was totally successful, and so after several more months of healing time we were given the all clear to try again. I was highly frustrated by how much time we’d lost already (9 months or so all told), but I felt lucky to have found the septum before it had a chance to really cause problems and of course, everything would be smooth sailing from there on.

In fact, I got pregnant very fast the second time around as well. In Sept. of 2011, the very first month we tried, we got a positive test, and we were only slightly less excited than the first time. We had learned to be a little more cautious inside, but we still told our families pretty much right away, and I whipped out the calender to figure out how the due date would affect dissertation writing and defense plans. Then week five rolls around, and just like the first time (almost to the day), I started spotting. I called Dr. O’s office and they rearranged their schedule to get me in for an ultrasound almost immediately. G left work early to come meet me for the ultrasound (he has managed to be at every single ultrasound I’ve ever had, which is no small task and speaks volumes about how much he cares, even though early on he had trouble showing it).

Right from the beginning, it was clear that pregnancy #2 was no more normal than #1. Whereas at 5 or so weeks embryo #1 was so small as to be invisible the first time around, this time there was a heartbeat, even before 6 weeks. But, the sac was oddly shaped, and had poor margins. Over time, we’ve learned you can read volumes from the face of an US tech, and this one was not impressed. Talking with Dr. O afterwards, he was wonderfully honest, and told us the likelihood that this pregnancy would succeed was not great. He doesn’t like to give odds, and my husband (an engineer), always pushes him for a number. Its become a running (if morbid) joke between them. With prodding, Dr. O said he gave it a 25% chance. I’d like to say I heard that number and moderated my expectations realistically based on it. But I did not. Outwardly, I said it probably wasn’t going to work out, but inside I still believed I couldn’t possibly be that unlucky. We suffered through two weeks of torture before we could go back for another US, but by the time our second US came around, there was no longer a heart beat. We scheduled my second DnC for a week later.

From here on out, my story becomes pretty repetitive. A few months later (January of 2012) there is pregnancy #3. Again I got pregnant fast, again I started bleeding at 5 weeks, and again on our first US there is a heart beat. In fact, #3 is the closest we have had to a normal embryo, at least in all the ways you can measure normalness in a 6 week embryo. Heart beat normal, size normal, sac normal, everything normal except the bleeding. And the bleeding was heavy. Like, pads are useless, I need a diaper kind of heavy. It was always a total shock when it would start too, once I was in the middle of a meeting with my advisor and had to excuse myself because I was fairly sure my khaki’s were not khaki any more. Another time was in the middle of giving a lecture to 30 undergrads (that one was particularly bad because the sudden loss of blood caused such a big drop in blood pressure that I almost fainted. talk about embarrassing).

With #3, the 6 week US was normal enough that the US tech actually smiled once and at the end offered to print a picture for us. Well this is certainly new, we thought. By then we knew better than to let our hopes get away from us though. And sure enough, by 8 weeks or so the US showed no heartbeat. This loss is probably the hardest, from the standpoint of my hopes that I’m capable of ever carrying a pregnancy. By every possible measure, this pregnancy appeared normal. Afterwards, karyotyping confirmed normal XY chromosome count. Yet, my body still spit it out. This makes it impossible for me to beleive that it’s just bad luck, and nearly impossible to beleive that it would ever be different.

After #3, we talked with Dr. O about testing and treatments. We did every test available, which isn’t much really, and for most of the tests out there even if you find a positive result, there’s no evidence-based treatment available. I was not one of the lucky ones (well, lucky is probably too strong a word), who get a diagnosis. I have idiopathic (unexplained) recurrent pregnancy loss. In this case, there are really only one or two things that doctors ever prescribe, and there isn’t much scientific evidence to support either. One of these is progesterone, and although Dr. O felt that it was extremely unlikely that it would make any difference, he agreed to let me try it, because it couldn’t possibly hurt. Honestly, I didn’t think it would make a difference either, but I thought at least we can say we tried everything.

The other thing I found in my reading (which I did a ton of), is that there is some reason to beleive that androgen levels may have an influence on the uterine lining, and consequently implantation and miscarriage. This was extremely telling to me because ever since the first time I got pregnant, I had been noticing super annoying signs that my androgens might be out-of-whack. Granted, they measured my actual androgen levels and they were within the normal range, but it can’t be as simple as the absolute number because I started breaking out and growing hair around my jawline in a most unladylike fashion. I know lots of women deal with this, and I’ve never had great skin to begin with, but it had become a real issue, and it was very distinctly around my jawline, which is indicative of overactive androgens. I brought this info with me to Dr. O, and he agreed that it couldn’t hurt to try a treatment they prescribe for PCOS patients to reduce androgens. He put me on metformin, which has some side effects (which can actually include weight loss, finally a perk!), but couldn’t possibly hurt a pregnancy.

So armed with the fact that we were doing something different this time, even if it only had some sort of placebo effect, we jumped back in. To my extreme frustration, month after month passed without a positive result. For those of you who have spent years trying to get pregnant, I apologize in advance for whining about this, but because I knew just getting pregnant at all was not the point, I was massively frustrated to be wasting so much time. It felt like moving backwards not forwards. I needed to get pregnant, at which point I would most likely miscarry, but at least I’d be moving in a direction. After about five months of trying (yes, I know this isn’t that long, again, I’m sorry for whining about it) we decided that the timing was really going to get too complicated to handle with my anticipated defense and graduation dates, so I called Dr. O to say I was going off the metformin and we’d stop trying for a while.

As it turns out, not trying is almost impossible for me to sit with. I became so frustrated and depressed; I was just stuck in limbo treading water (mixed metaphors much?), not even moving in the direction of what I wanted. We didn’t even make it a month before deciding to keep trying, the hell with any complications it might (or likely would not) have on my professional life. The only difference was I was no longer taking the metformin (you have to ramp it up, so after stopping I couldn’t just go back on it immediately). And I got pregnant that month. I have no good reason to think that the metformin made a difference, its only coincidental, but I have a strong suspicion it was related in some way (this is absolutely not a criticism of the drug or anything like that, it was never indicated for me to be taking it at all). In either case, we had the progesterone this time, and I was pregnant again.

With #4 I started bleeding the night Obama won re-election. I was in bed crying when G came in to tell me the news, and barely even heard him. At the first US, things were just weird and confusing. There was a strong heartbeat and the embryo was appropriately sized, but the sac was huge and abnormally shaped. The US tech was not smiling, and she did not offer us a picture. Again, Dr. O refused to give us odds, but we knew it was not going to happen. The pattern was too strong: bleeding at 5 weeks, heartbeat at 6 weeks, nothing at 8 weeks. Yet again we waited through the horror of the two weeks until the 8 week US. And for the first time, we still had a heart beat at 8 weeks, but things had gotten totally wonky in there. The sac had grown to the size of a 9.5 week sac, it was long and stretched out, and had something unidentifiable inside it (besides the embryo). This was clearly bad news despite the survival of the embryo, and Dr. O said to plan for a DnC in a week. Sure enough, by 9 weeks the heartbeat was gone and I went in for surgery #5.

So there you have it. DnC #4 was in December of 2012, exactly two years after we started trying, and here I am no closer to the prize. After I was healed and would have had the go ahead to try again (probably March), we decided to hold off trying again until after my graduation in May. Not because of graduation itself but because we felt we deserved an amazingly awesome reward, both for me getting through a PhD and to make up for the sucky few years we had had. In May we went to France and Italy for 11 days, and it was really one of the best memories G and I have together. Amazing enough to make up for wasting another 5 months or so.

Well this turned out very long (again), but I’m just about all caught up now. If you made it to the end, you deserve a prize :).

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All the gory details (part 1)

My story in numbers:2625357982_d9efbe18bb_b

6: years married
2.5: years trying for a baby
7: positive pregnancy tests
4: times we heard a heart beat
4: times there was no longer a heartbeat
5: surgeries
2 (or more): chemical pregnancies
0: explanations
0: BABIES

 

The long and short of my story is basically that my uterus spits out babies as fast as I make them, and there’s no justifiable reason why. The purpose of a blog I guess is to tell you how this all makes me feel, but the bottom line is pretty simple. For no apparent reason, my body does not comprehend the concept of pregnancy. So, that’s the short version. Here’s the longer version if you have the patience for it:

My husband and I met over spring break our freshman year in college. It’s actually a pretty embarrassing story for me, definitely not my proudest moment, but that’s a story for another time. He went to school near our hometowns in the midwest, I was out on the east coast. When I came home for the summer, we spent almost every day together, but assumed that long distance doesn’t work for anyone, right? So we broke up before I went back to school. It was only a few weeks later that we decided breaking up was boring, and figured we’d give it a shot. We’ve been together ever since. Our first three years together were long distance, then we moved in together after college and got married six years ago.

My husband is loving, brilliant, and extremely goofy. He would do just about anything for me and wants so badly to make me happy. One of my favorite things about him is how much he adores our cats, so I always knew he would be an amazing father. He talks to them like babies and spends hours cuddling with them. It doesn’t sound manly, but he’s pretty secure with his manliness so its not a problem :).

After we got married I was in grad school, and in a program that would likely require me to do some long term traveling, so we didn’t start trying to get pregnant until December of 2010. I was still a year or two away from finishing my PhD, but others in my department had had babies during grad school, and it seemed to work out pretty well for them. I figured, better to get it done now before I have to worry about the tenure clock (puke, thanking god I don’t have to worry about that crap anymore).

Our second month of trying we took a pregnancy test and shockingly, it was positive. Needless to say we had all the emotions normal people have when they see a pregnancy test: excitement, terror, etc. We told our families pretty much right away, and since they didn’t have any idea we were trying they were shocked and unbelievably excited. My parents especially were beyond happy, I’m the oldest and my brother may never have kids, so I’m sort of their only hope. My mom admitted that she hadn’t wanted to bug me that we waited so long since she was so proud of me for getting a PhD, but she’d been dying to have a grandkid (thinking of this now in retrospect, OUCH).

Well, we had all of about a week before things started heading south. At about 5.5 weeks, I noticed a tiny bit of spotting. I did the obligatory google search and found that lots of people spot in early pregnancy, not necessarily a big deal. And so I didn’t think that much of it. I happened to have a doctors appointment later that day for something completely different (not an OBGYN), so I brought it up, thinking why not just ask to make sure I shouldn’t be worried? The doc said its probably nothing, but why not go have an ultrasound at the ER just to be sure? HUGE MISTAKE.

We dutifully went right over to the ER, and proceeded to wait 6 hours to even get out of the waiting room. At one point they wanted to put in an IV, and I managed to have either a seizure or a vaso-vagal reaction (basically I just fainted, but the nurse freaked out because she thought I was seizing and called in a million people to stare at me). They took blood and my hcg was at 160,000. I keep thinking I must be remembering this wrong because it’s such an insanely high number for 5.5 weeks, but it’s pretty much burned into my memory. With that, they were actually talking twins (because higher hcg’s can sometimes mean twins). Finally, around midnight a doctor came in to actually do the ultrasound (transvaginally- if you haven’t had this joyful experience, its like having a giant plastic wand shoved up your crotch. Oh wait! that’s exactly what it is…) , and being that he wasn’t an ultrasound tech it took him around half an hour to figure out what he was looking at. He thought he saw two sacs, but he wanted to get a consult from an OBGYN to be sure (you couldn’t have done that to begin with??). Another two hours later after repeating the experience yet again, the OBGYN tells us that there is in fact no embryo at all. The second ‘sac’ is actually a bleed, and the first sac is apparently empty.

We were finally able to leave the ER around 3am, all our hopes crushed. The OBGYN told us to follow up with another ultrasound a week or two later, to confirm the diagnosis and see if I would need a D and C to end the pregnancy. You’d think this would be the end of the story, but of course it couldn’t possibly be that simple. We suffered through the week of waiting for the next ultrasound, and showed up at the OB’s office surrounded by happily pregnant women. All I can say is thank goodness for ultrasound techs who know what the hell they are doing, because transvaginal ultrasound number three was mercifully brief compared with the others. We were expecting to confirm the blighted ovum diagnosis (sac but no embryo), but instead the ultrasound tech turned the monitor and showed us a heartbeat. Yes, there was in fact an embryo and it had a heartbeat.

Being the naive people we were at that point, my husband and I looked at each other, started crying, and kissed. So, it could actually be okay, maybe this was all just a funny story we would tell when our baby was born. “A silly ER doctor told us you didn’t exist!” we’d laugh. I say we were naive because the ultrasound tech was not smiling when she told us there was a heartbeat. In fact it was extremely slow. She brought in the OB, who was really hedgy with us. She wouldn’t say it was bad news and she wouldn’t say it was good news. She just said we’ll take another look in two weeks. And the only thing we heard was “it could be good news”. Like idiots, we went about our lives for two weeks thinking surely this would work out fine. The heartbeat will speed up and next time it will be a perfectly normal US.

I doubt I need to explain that it was not a normal US. Two weeks later there was no heartbeat, and we scheduled my very first D and C. The fact that we were devastated is probably obvious. What wasn’t so obvious was how stupid I felt for not picking up on the fact that there was no way this pregnancy was ever going to turn out okay. A 5.5 week sac that appears empty is not normal, even if it eventually develops an (extremely slow) heartbeat. I wish that the OB would have been more upfront with me to begin with and saved me the weeks of thinking things would be okay just to be even more let down in the end. We had the D and C a week later, and besides the nerves associated with surgery, it went as smoothly as could be. In our minds we had gotten through the hardest part, and from there on things would be smooth sailing. We had a sucky first experience, but miscarriages happen and next time would be great. If only I could get back to a time when I believed that…

Well, this has been an extremely long winded beginning to my story, and I’m only two months in :(.  I’ll pick up where I left off next time, and I promise to keep it shorter….

Wait, somebody might actually read this???

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So, I started writing this blog last night and woke up this morning to see that all of TWO people had already viewed it. A whole two people you say? Why would I be surprised by that? This might sound ridiculous, but I don’t think I really expected anyone to actually care enough to read it. So, even though this is supposed to be a blog about my disfunctional uterus, since I’m attempting to be honest here I might as well say that I also happen to have social anxiety. Part of which is a serious lack of belief that anyone will actually pay attention to or care what I have to say about anything. It’s also why I don’t plan to give my name or tell anyone I know about this blog. I’m explaining this now, both because it’s a pretty big part of my life, and because it will probably help to explain a lot of the weird and irrational ways that I have handled infertility.

I should say that I am pretty high functioning with my anxiety at this point in my life. I struggled for years and years having absolutely no idea that anything was unusual about my constant fear of rejection and humiliation. I originally went to therapy because I was having problems in my relationship with my husband (which were clearly my fault, not an issue that needed couples counseling). It only took one session before my therapist figured out that anxiety was the real problem. Oddly enough, I could use phrases like ‘I suck in social situations’, but it had never occurred to me that this could be social anxiety. In fact, when I told my husband about my therapy session, his reaction was “well of course, you have social anxiety”. As if he’d known all along and just assumed I knew because it was so obvious. I guess that’s what they call denial! It had gotten so bad that the only person I actually felt comfortable with was my husband, I religiously avoided making phone calls, and I spent days stewing with worry over social activities I couldn’t get out of.

Like others I’ve heard about, my anxiety doesn’t take the form of shyness. If you see me in public, you’d think I’m comfortable and even outgoing. But this is actually a facade that requires constant work and a massive amount of energy. In fact, one of my biggest fears is people figuring out that I have this problem, and that I’m uncomfortable around them. So I make any and all efforts to appear confident and natural when I talk to people. Very rarely is this the case, usually I’m over-thinking every single thing I say and worrying that you think I’m boring and a waste of your time.

Anyways, I spent a couple years in therapy, eventually tried medication, and both have helped enormously. I no longer feel like anxiety runs my whole life, and I have friends that I feel my interactions with are mostly real. The social anxiety is so deeply rooted and part of my identity though that it will probably always influence my thoughts and actions in weird ways. I still hate talking on the phone, I start shaking with nerves when I have to walk in to a party (even family get-together’s or at close friends houses), and I avoid going alone to places I’ve never been before.

All of this is to say, its a huge deal to put myself out there in the world, even anonymously. I’m fairly certain this will blow up in my face and I’ll be ‘outed’ on multiple accounts as an infertile social weirdo. But I promised to be honest and real (for once in my life),  and maybe this will reach someone feeling like their anxiety can’t ever improve (I’m proof it can) and have a positive effect.

By way of introduction….

Under different circumstances, I’d start this blog by telling you my name, job, pet names, and all time favorite food. I could do that, but none of that really matters here. My identity has become more and more about being infertile lately, and that part of me is relatively hidden in my daily life. In case you’re really curious, my current occupation is in transition (I finished a PhD but no longer have any ambitions in that area), I’m relatively obsessed with my three cats (whose names, along with my own, will probably stay anonymous for now), and I couldn’t possibly pick between half a dozen unhealthy things as an all-time favorite food. In fact, the only things that really make me happy (like, for real happy) are dessert, wine, and traveling. Unfortunately, the former two are not so good for my waistline, and the latter is not so good for our bank account. But really, what I want to talk about here is how sucky life is at the moment.

I’ve started this blog mainly because I need a place to vent, and friends and family can only be expected to hear my sob story so many times. After two and a half years and 4+ losses (more about that next time), I feel like even my most patient friends have become fatigued hearing about my same old problems. I have been part of an infertility support group in my city, which has helped, but no one there has my particular problem, and recurrent pregnancy loss just isn’t the same thing as other types of infertility (of course there are lots of things we do have in common, and I’ve certainly come to consider myself ‘infertile’ even though I can technically get pregnant).

Most importantly, I just need a place where I can really be honest about how I’m feeling. I’m a relatively private person, at least when it comes to this. Which is why I will probably stay anonymous here. I wish I had the courage to be ‘out’ about this, but the truth is its hard to even think about putting all of this out there anonymously. Hopefully even if I post without my name I’ll still be able to reach people who are going through the same thing and need to know they are not alone. Infertility, and particularly this kind of infertility, is extremely isolating. You feel like ABSOLUTELY every person in the world is pregnant or has their baby, and you are just flat out not in the club (not to mention they don’t hesitate to remind you of it every other sentence). So, if you have found this because you are also recurrently lost, welcome to the club. Its a sucky one, but at least we’re not alone.

I’m not sure that was much of an introduction, but it’s the best I’ve got for now. Next time I’ll give you more details about how I got to this point.