All the gory details (part 2)

bellingham

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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11 thoughts on “All the gory details (part 2)

  1. I’m so sorry you’ve had to go through all that. It must have been so horrible for you. It’s great that your husband is supportive and comes to all your scans, it’s easier not having to go through all this alone.

  2. my loss was heartbreaking and life changing. Losing another pregnancy is my biggest fear at the moment (gotta get pregnant again first though). I can’t imagine suffering through what you have endured. I’m guessing you’ve probably looked into this already but I have heard that there are a few doctors out there that specialize in fertility problems related to immune issues… maybe that could help? It seems that with a pattern as specific as yours that there is a definite cause, it’s not coincidence. I’m glad you found us. I hope you find this community supportive and comforting as you continue your journey.

    • Hi there! Thanks for the support :). Yep, I’ve had all the testing available (which is not actually that much), and everything came back normal. Its just so poorly understood there’s very little to test for and even fewer treatments.

  3. I’ve had two early losses and they were devastating to me. I’m so sorry for all you’ve been through. I’m sure even getting the positive pregnancy test at this point is terrifying. I’ve found blogging really helps me– I hope it will be helpful to you too. Congratulations on your graduation, by the way!!!

    • Thanks and thanks :). Honestly, I’ve got so little hope left, I feel pretty much nothing at positive pregnancy tests at this point. I’ve said if I can make it past week 7 or so without bleeding maybe I’ll start to have some hope. I totally identified with your post about your SIL being pregnant- I’d be the same way. If I ever make it that far I’ll still be totally angry and frustrated at how easy it is for everyone else, and so jealous of how excited they get to be.

  4. I just stumbled upon your blog, and your story is touching. You are right that it is a club, and not one that anyone should be a part of, but in a strange way it’s nice to have other members. I used the exact same comparison in my writing about the first loss my husband and I suffered. Our story has many similarities to yours (the unexplained recurrent miscarriage-we’ve had three, getting no answers from tests, having a septum). Thank you for having the strength to share your story. I hope in some way, you find peace and comfort in doing so.

  5. I am so sorry for your losses. I’ve had one miscarriage, and that was enough for me. (I suspect I’ve had two very early losses since, though.) It’s devastating. If you haven’t been through it, there is no way you will ever understand it.

    Similarly, infertility sucks, no matter which way you experience it. Looking forward to cheering you on in your journey! xo

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