Optimism

I'm going to try something new. I'm going to try thinking/assuming that everything is going to work out just fine, at least in the short term.

The bad news is that AF did not show last week, but the good news is that she is not here yet! We're leaving for Spain today and I'll be gone for 9 days. So if she holds off till at least Saturday, I will definitely be home for the HSG window. I'm thinking my chances are good. Plus, based on what I've read, it's not taking abnormally long to get AF after a m/c.

(Here's the thing, though: I've been having phantom pregnancy symptoms for the past few days! Nothing major, and nothing that couldn't possibly be PMS, but it's still a little freaky. Examples: when I was pregnant, I was fatigued like crazy, I had vivid dreams, and I got tonsil stones constantly. [I won't link to the Wikipedia article on tonsil stones: search at your own risk. They're very gross.] So I've been pretty darn fatigued lately, I've had a few vivid dreams, and I woke up Sunday morning coughing up a tonsil stone. Oh, and I've had to pee waaaay more than average lately. I've tested three times, all BFN, though one turned positive outside the time window. I have one test left, which I'm taking to Spain to use when I feel necessary. Pregnancy would be extremely unlikely right now, but see this post for my views on the odds. "Very unlikely" doesn't mean as much to me any more. I'm 99% sure I'm not pregnant, which is a great relief, but it sure is hard not to want to be pregnant. That is the goal, right?)

Yes, optimism. Patience. Going with the flow (hahahaha, pun!). I'm all over it.

Patience

CD 30 and no AF in sight. I've been having PMS symptoms on and off, but all I can really gather from my body's signals is that my hormones are still completely messed up and I have no idea what to expect. But while two weeks ago I was very anxious to get AF by 3/17 (or 3/19 at the very latest), at this point I'm just rolling with it. What will be, will be.

Patience is probably the strongest theme on this blog and in my life right now. Each time I have a tiny sliver of new information about this whole ordeal, I get very worked up and eager to have answers NOW. Finding out that the HSG requires a very specific situation in order to take place only made matters worse. I told myself to be patient; others reminded me that I would have to be patient. Well, patience is not a switch I can turn on and off. Patience must be practiced. In the past month, I have found patience through the turning of the earth, through the simple fact that life can and must go on. In the past few weeks, I have gradually become more calm, more peaceful, and I attribute that to increasing numbness, forgetting what it's like to go through what I've been through this year. And, happily, I've had distractions. I'm a church musician and it's Holy Week, so obviously I'm keeping myself busy. As far as taking care of my anatomical problems is concerned, patience is the only option. And that's okay.

Now as my "AF Deadline" is imminent, I am trying to wake myself up from this numb, sleepy patience. I'm trying to remind myself that I mean to take charge of my own care; I need to be my own advocate in the medical world. Unless AF arrives tomorrow (not likely), I intend to call my doctor on Thursday to see if she can order an MRI. It is not outside the realm of possibility that she doesn't know that MRI is better for diagnosing MAs. (It's also possible that it's not feasible to have an MRI before HSG. I don't know--but there's no harm in asking.) And I think as soon as I finally have a period, I'm going to start charting my basal body temperatures daily so that I can have some clues for myself, or a doctor if necessary, as to what is really going on in my crazy body.

Can I remain patient while arming myself with as much information and knowledge as I can? That remains to be seen. But I don't doubt that patience will find me when it becomes the only option, and I'll be okay.

Müllerian Anomalies Explained

I am not a doctor. But if I were, I probably wouldn't know much about Müllerian anomalies, so I don't mind sounding like I know what I'm talking about. As a reminder: my doctor told me immediately after my D&C that I have something in my uterus that may have caused my miscarriage. It could be a septum or I may have a bicornuate uterus. At the follow-up appointment, she did not say the words "septum" or "bicornuate," but when I mentioned a septum, she hinted that that's what she thinks it is. I await further diagnosis through HSG.

Someone on the Nest pointed me to this Yahoo! Health Group: Müllerian Anomalies. It has, by far the most comprehensive information on the web on MAs. Rather than putting it all into my own words, I've decided to copy/paste from their FAQ page, and put in bold the statements I find to be important.

1. What does müllerian mean?

The uterus, fallopian tubes and upper vagina are made up of two partially fused tubes, which, in the embryo, are known as müllerian ducts, named for physiologist Johannes Peter Müller, who first described them in 1830. They are also known as the paramesonephric ducts, and are at first present in embryos of both sexes.
Normally, these ducts run down vertically from flank to pelvic floor in the young embryo and eventually fuse into a double-barreled tube with two loose ends, known as the uterovaginal primordium, or UVP. The double UVP will eventually merge into a single-barreled uterus, cervix and upper vagina, while the loose ends develop into the fallopian tubes. In adulthood, these organs are referred to as the müllerian tract and congenital malformations of this tract are called müllerian anomalies, or MAs, as we call them on this list.

2. What are the different types of müllerian anomalies?

d. Bicornuate uterus (BU): The uterine fundus fails to fuse and a myometrial division extends down to the cervix in a complete bicornuate uterus, or part way to the cervix in a partial bicornuate uterus. The division is visible on the outside of the uterus, evidenced by a groove or cleft in the uterine dome exceeding 1.5 centimeters. Cervix and vagina are usually single but may be septate or duplicate. BU has relatively few pregnancy complications when compared to SU or UU, with breech presentation being one of the most common.

e. Septate uterus (SU): The müllerian tract has fused properly and the uterus looks single from the outside, but the inner duct wall (i.e. the median septum) has failed to dissolve around 20 weeks of gestation, and the uterus retains a double cavity. There may or may not be a shallow groove of 1.5 centimeters or less on the outer uterine dome, and sometimes even a whitish triangle of tissue, the septum itself, is visible. The somewhat fibrous inner septum extends to the internal cervical opening or beyond in a complete septate uterus, and extends only part of the way down in a partial septate or subseptate uterus. The inadequate blood supply and progesterone receptors of the median septum may cause problems in pregnancy, giving the SU the worst pregnancy outcomes of all the MAs.

Obviously, there are other types of MA, such as unicornuate, arcuate, and didelphys, but SU and BU are the most common and seem to be the most relevant to me at this point.

7. Is HSG alone good enough for diagnosis?

First of all, in an infertility work-up, a hysterosalpingogram (HSG) should be done to either rule out or assess the presence of a two-chambered uterus, the depth of the division, as well as tubal patency. But an HSG alone cannot differentiate between septate and bicornuate uterus. Misdiagnoses of BU by HSG are very common.

Other methods have better levels of reliability:

• Transvaginal ultrasound is nearly 100% successful in detecting a bifid uterus, but only 80% successful in differentiating between SU and BU. It can be a helpful tool in the diagnostic process, but should not be relied upon alone.
• Three-dimensional ultrasound (3DUS), is 92% accurate in differentiation of BU from SU, according to one 1997 study, but not widely available at the time of this writing. It should not be relied upon alone, with an 8% margin of error.
• According to two studies done in 1994 and 1995, MRI can reliably differentiate between BU from SU, with an accuracy of 100% in comparison with laparoscopy/hysteroscopy. More recent studies cast some doubt on this. Proceed with caution after an MRI.
• Concurrent laparoscopy and hysteroscopy are considered the "gold standard” of BU/SU differentiation. This test is invasive, but if needed, corrective hysteroscopic metroplasty can be done at the same time.

8. Should I have my uterus surgically repaired?
Hysteroscopic metroplasty, abdominal metroplasty, hemihysterectomy, vaginoplasty

The quick, reflexive party line here is that if you have a septate uterus, yes, you should have it fixed. Studies tend to show a poor pregnancy outcome in the uncorrected SU, but a near-normal pregnancy outcome in the surgically corrected SU. Of course there are exceptions, and we should not forget that most women with a septate uterus are never diagnosed, and may indeed have no trouble with reproduction.

Bicornuate, arcuate and didelphic uteri are generally thought to do well in pregnancy, but some studies show correlation to miscarriage and other problems. Again, take your history into account, first and foremost, and weigh the benefits versus the risks. Surgical correction of a bicornuate uterus involves an open (laparotomy) procedure in which the surgeon cuts through the uterine wall of each horn and then sews them together. Unlike most septum surgeries, abdominal metroplasty is a major procedure and carries greater risks of bleeding, infection, adhesions, infertility and rupture during pregnancy. Recuperation takes at least twice as long, and greater pain control is required.

The FAQ page continues with details about surgeries and diagnostic tests as well as success stories. In the past few days, I've also been reading the huge backlog of posts on the message boards. It's refreshing to see so many people who live and deal with these problems, most of them able to have children. I'm finally to the state, emotionally, where I can deal with reading so much information, accepting the risk of getting very worried about the type of care I will receive. Will my doctors be familiar with these problems? Why am I wasting time waiting for an HSG when it doesn't even show the outside of the uterus? How long will I have to wait to see a specialist, if indeed I will have to see one? How long will it be before I can have the surgery, if I have a SU? Is it realistic to hope I can get pregnant again before the end of the year?

It's frustrating that no one can answer my questions, though I am tempted to call my doctor and share my concerns about the HSG. If my safe window for HSG falls while I'm overseas in a few weeks, it will be very hard to wait another month. I will still know nothing! On the other hand, I may be premenstrual right now and don't yet have reason to give up hope that I will be able to have the HSG done in the next few weeks, in which case I can be patient. I suppose.

For the first time, I feel like God is trying to tell me something. Maybe this wasn't the right time to have a baby, and from this experience I will learn the very great importance of patience.

The Follow-up

It has now been over two weeks since the D&C. The time seemed to go fast--I need to embrace that feeling, because there will be many more periods of waiting from now until we have a baby.

The appointment time was 10:45. I was so happy that Erich could go with me; we got there right around 10:45. We finally got into an exam room at 11:40ish. That was the longest I've ever waited in that office in the short time I've been going to that practice. I know, however, that the wait was due to the fact that the other doctor that day was not able to come in. Luckily, it was not the doctor I was seeing, so at least we weren't sent home.

There were a lot of largely pregnant women in the waiting room. And there was a newborn. I'm not bitter enough to hate these people for remaining pregnant, but it sure makes me uncomfortable to be around them. I should be 15 weeks pregnant already. Booo.

So a nurse finally took us back, took my blood pressure, apologized kindly for our loss. It was nice of her, but the sympathy of strangers irl always throws me off kilter a little bit. When we got to the exam room, Erich and I were both feeling a bit nervous. But as we got used to our surroundings, we calmed down a bit--we had plenty of time, anyway. Dr. P came in a few minutes after noon--only 1 hour and 15 minutes after our appointment time!

I've decided I really like Dr. P. She's very pleasant, has a great bedside manner, and seems very capable. She did a quick internal exam, seemed very glad to hear that the bleeding has stopped, and then got right down to business with this little possible-septum problem. She was more non-committal this time; though she didn't exactly imply that there could be anything besides a septum in my uterus, she also didn't seem to be working with an assumed diagnosis. She did say that whatever it is could have caused the m/c if the baby implanted in a part of the uterus that was tighter and unable to stretch properly. She ordered an HSG, or hysterosalpingogram, to see the interior of my uterus and determine what's there, and from there they'll determine what happens next--whether it will be removed and how, or if no action will be taken. I asked how long it will take before I can have this done, and she said there's no big delays in scheduling--within the next few weeks. I took this as good news. I think she totally understood our desire to get this figured out and fixed as soon as possible.

When we checked out, I got a card with a number to call at the hospital to schedule the HSG. They told me to wait 2-3 hours for them to get the order into the computer system before I called. Around 3pm, I had a free moment, so I called Central Scheduling. After being put on hold for a while then asked a few questions ("Do you have the order?" No, they said it was in the computer system. "What's the diagnosis?" Um, I have no clue? Isn't that why I'm having a test?), they finally asked when my last period was. I couldn't tell them; I said I just had a D&C two weeks ago and am waiting for my first period. The lady said the test HAS to be done on CD 8, 9 or 10. So I have to call back the day I get my period to schedule the HSG for 7, 8, or 9 days later. Oh yeah, and NO INTERCOURSE from the time I get my period until two days after the test. Otherwise they WILL NOT do it and I'd have to reschedule.

Complication: Erich and I are leaving the country on 3/27 and I'm returning 9 days later. AF may arrive anytime between two and four weeks from now. We're involved in a very intricate dance in which my body has to fully cooperate if I'm going to have this HSG before we leave. I've already figured that AF needs to arrive on 3/17 (28 days after D&C, what wishful thinking) if I'm going to have a good window before we leave. The second best option would be if AF arrives while we're gone. I'll just make an expensive phone call to schedule it for the following week. Unacceptable would be AF arriving the week before we leave. This timing would necessitate waiting for another cycle before HSG.

As I get nervous about what might happen in the next few weeks, I get very frustrated at my body, because I don't trust it to cooperate. Heck, if my body were cooperative, this stupid septum would have dissolved when I was a fetus like it was supposed to. Stupid body. (Even as I type, my left forearm is seizing up with tendonitis pain. This is just insulting.)

The D&C helped trigger deep feelings of loss and grief. This follow-up appointment has sparked feelings of frustration, a dash of bitterness, and did I mention frustration? I just want to move forward, to achieve my goal faster than is actually possible at this juncture. I wish there were some way to peer into the future, to get some real reassurance that someday we'll be able to have a family of our own. Right now it feels like I'll never know. Blergh.

The Memory of a Two-Year-Old

I stopped by my parents' house today because my grandparents were in town visiting, and my two-year-old niece was there as well. The girl is brilliant (and she needs cousins!). We told her along with the rest of the family that we were having a baby back in January, but we couldn't tell if she really "got" it.

This afternoon, she was sitting on my lap and picked up a baby bib that my mom had been working on, a counted cross-stitch project. She said something about how the bib is for a baby. Then she said, "Susan having a baby. Mama Elaine [my mom]! Susan having a baby!" as though announcing something exciting that she had just remembered. I took a deep breath, hugged her, and replied, "Not any more, sweetie."

This is a sob story, right? Indeed, it was very cute and sad and bittersweet. But it didn't shake me to my core, make me tear up and run out of the room to relive the devastation. You see, I've developed a pretty good skill for detaching myself. In the face of this sad yet remarkable (she is quite intelligent for a two-year-old) moment, I became someone else, like a relative of the sad girl who lost her baby. I understand how sad this must be for her, but I'm not her.

I suppose I don't want to appear overly fragile to the people around me. I don't want people to worry that I'm going to lose it at any moment and that they have to be careful around me. If I can keep it together, then the miscarriage can remain a safe topic of conversation. In my mind, not talking about it is tantamount to pretending it never happened, and that's the last thing I want.

What to Say

I am so blessed and fortunate. I hear anecdotes all the time of people saying "the wrong thing" to someone who has suffered a pregnancy loss. I've also read other blogs on the topic of miscarriage, many of which include a list of "what not to say," which is often copy/pasted from another blog. I've read that list and agreed with it a little bit, but I find my reactions to vary somewhat from others', and for that reason, I'm going to compose my own list. But first, I need to explain a few things.

A few short weeks ago, I had no idea what I would have said to someone who's had a miscarriage, beyond "I'm so sorry." Well, it turns out, that's one of the best things things I've been told, besides "you're in my/our thoughts and/or prayers." What I want people to understand is that there's nothing that can be said, no statement to wrap up the grief in a neat little package, to make everything better. That's the nature of miscarriage: there was nothing I did to cause it, there was nothing I could do to stop it, and now there's nothing that can be done to erase the loss. Even though I continue to feel better and may eventually feel no more sorrow, the loss still happened. I will always have one baby that was never born.

Before I launch into my list, I want to make clear that no one who said anything to me or Erich made us feel worse. There are certain things that make us feel better, but no well-intentioned person said anything to worsen our state. (This is mostly a sort of disclaimer to stop anyone we know who is reading this wondering if you said "the wrong thing." You didn't.)

What NOT to say:

• "Get over it." or any variation thereof. This definitely tops the list of insensitive things to say. It would be far, far better to say nothing.
• "There was probably something wrong with the baby." In the majority of miscarriages, this may be true. The baby probably had some kind of chromosomal defect. But offering this statement as comfort is tantamount to saying the parents would have loved a disabled child less. Unless the fetus was tested and a profound chromosomal disorder was found, this statement does not offer much comfort. Furthermore, in my case, there is a very good chance that nothing was wrong with the baby, so I don't want to hear it.
  

What is not very harmful, but doesn't really help either:

• "It's all part of God's plan." I consider myself a devout Christian. Lutheran, specifically. I believe that God is loving and powerful, but I do not believe that God planned for my baby to die. Good has come out of this situation and good things will happen that couldn't have happened otherwise, but my baby died as a result of sin in the world. The new "Christian Lite" Evangelical idea of God having a plan for me that extends to my finances and friendships and weight loss endeavors--I think it's all fluff, and its rhetoric turns me off. It's best avoided.
• "It wasn't meant to be." Similar to the above. Not harmful, but not very helpful. Who says it wasn't meant to be? In any case, I'm still very sad and disappointed. Why couldn't I keep that baby? "It wasn't meant to be" doesn't answer the question.
  
• "At least you can get pregnant." This does help a little, but not a lot. Yes I can get pregnant, but can I stay pregnant? The jury's still out on that one.
• "I know how you feel." I truly believe that the people who have said this to me believe it to be true. On the baby-loss aspect, I'm right there with them. But now I just want to say, "Really, do you have a weird uterus that caused your miscarriage?" They know how the loss feels, but they don't know how I feel.
• "I'm sure you'll go on to have many children." Do you know that, really? I believe it in my heart, but I still have doubts. Legitimate ones.
• "It could have been worse." Yes, it could have. I think a later loss or stillbirth might be worse. But it's not very helpful to minimize my grief. And it's the worst thing I've experienced, so let's not introduce the possibility that something worse could happen in the future, k?
  

What to say:

• "I'm so sorry."
  
• "I'm thinking about you."
• "You're in my prayers." This experience has taught me the power of prayer. There were times when I felt no strength to carry on, but I did anyway. I attribute this to faith and prayer.
• "Is there anything I can do?" Erich and I found in the first few days that we had no motivation to cook. I appreciated going to my parents' house for meals, getting asked out to breakfast with my sister-in-law, whatever could keep me from doing the mundane things like cooking that seemed so difficult.
  
• "It's okay, let it out." Or any variation. I appreciate my grief being acknowledged, and though it's not all I want to talk about, I don't want to be avoided. It is a little surprising how little miscarriage is talked about, considering how common it is.
  

Thank you, everyone, for your thoughts and prayers! Those help the most. :)