Happy-ish holidays

Just got back from a whirlwind 48 hours in Far-Off Smaller City for Christmas (or Holiday, as I must now delight in calling it just to piss off B!ll O'R*!lly). It was fine--very busy, but that's always best with my family. You don't want too much sitting around and talking, or else we start bickering.

I told my parents about the unicornuate uterus diagnosis. True to form, my mom immediately blamed herself, as I knew she would. I explained that no one knows what causes it and it is almost certainly not due to anything she did while pregnant with me, but she insisted that it MUST be her fault and kept apologizing to me and racking her brain for something she had done wrong. [I just wrote a whole long thing about my mom here but deleted it. Even though this blog is totally anonymous, best to be careful...] Anyway, maybe that's normal mom behavior, I don't know, but it irritated me a bit.

On the plane back, we sat in front of a family of five--mom, dad, two little girls, aged about 3 and 5, and a baby boy. In front of us was sitting another dad and baby. It didn't particularly bother me, but I had to laugh at the whole infertile-couple-surrounded-by-babies cliche coming true yet again. It's not just our imagination! We really are beset by babies at all times!

Office is totally dead today, so I went shopping at lunchtime (post-Holiday sales!) with a coworker. She was remarking how it feels like everyone in the world is married except her. I said all the usual of-course-they're-not things...but I guess she is just going through a version of what I feel, that everyone in the world (or in my life, at least) has babies except for me.

Nothing much else to report. This weekend is my birthday, so there will be some kind of low-key celebrating of that. I'm on Day 20-something and haven't ovulated, according to my BBT chart. And renal ultrasound next Tuesday. Whee!

What's next

Had my post-MRI follow-up today with Dr. S. My husband came along, and met Dr. S. for the first time. Apparently it was “bring our husbands to the RE” day today; every single woman in there had her hubs along.

So we got off to a bad start. Time of appointment: 12:45. Time we actually saw the doctor: 2:20. I appreciate that he spends as much time as you need and doesn’t hustle you out the door, but I left my office at 12:30 and didn’t get back until 3:15, and still hadn’t had lunch.

Dr. S. clearly hadn’t looked at the MRI report beforehand, so we sat there for a couple minutes while he read through it. (It was just a typed up report, no films. I was disappointed; I wanted to see my freaky uterus in all its glory.) Diagnosis of unicornuate uterus is confirmed; no indication of a rudimentary left horn, which is a good thing—a rudimentary horn that contains an endometrium (some don’t) but no outlet to the vagina can build up excess blood and tissue (=painful), for one thing. And I also knew from my Googling that a rudimentary horn also carries the risk of an embryo implanting in there (=bad)—apparently even if the horn isn’t connected to the main uterus, it is possible for sperm to migrate THROUGH THE PELVIC CAVITY to the rudimentary horn side, fertilize an egg on that side, and if there’s a tube, get sucked into the mini-uterus. But I have no rudimentary uterus and no left tube, so that’s fine. Apparently it also appeared that I have a cyst on the left ovary “consistent with endometrioma” (which resulted in Dr. S. explaining to my husband in great detail what endo is, not that he particularly cared to know). But Dr. S. wasn’t too concerned about that—he said it’s very hard to tell exactly what any given cyst-like thing is, even with MRI.

Then he gave us the lowdown on UU. No one knows exactly how common it is, he said—some say 1 in 10,000, some say 1 in 80,000, some say 1 in 500. He explained what it is, and that no one knows right now what causes it (which I knew from Google U.), and told us about all the risks, which I also already knew about—miscarriage, pre-term labor, incompetent cervix, abnormal presentation. He doesn’t think it should have any effect on my ability to get pregnant, only on my ability to stay pregnant. He has had patients with UU before, and none have gone full-term, but some have gone as late as 33 weeks. (Which, yikes. Still pretty scary.) Once I do get pregnant, my OB (who he knows) will want to monitor me very closely and work with a high-risk specialist.

Dr. S. was very adamant that we should avoid my getting pregnant with multiples if at all possible. The risks are bad enough with just one, he said. In fact, he said, if despite our efforts I do end up pregnant with multiples, he would strongly urge that we consider reduction—“of course, that decision would be up to you.”

Because of this, he thought we should continue with a few more Letrozole cycles for now—it’s a good protocol if you don’t want to overstimulate the ovaries, he said. Normally he’d only want to do 3-6 months of Letrozole, but in my case he said it would be worth doing longer if we wanted. (Though hopefully we would only need one cycle, he said, with that bright song-and-dance confidence they must teach during RE fellowships.) Ordinarily the next step after Letrozole or Clomid would be injectibles, but because we want to avoid the chance of multiples, if the Letrozole cycles don’t work he would recommend going straight to IVF, with single embryo transfer.

I asked, what happens if on a given cycle I only develop a follicle on the left side? Dr. S. wasn’t too concerned about that happening—he said that often with UU, there is decreased blood flow to the ovary without a tube, since a lot of the blood vessels supplying the ovary run along the fallopian tube. So chances are I will tend to ovulate more on the right side anyway. Not sure about that one—I will have to do some Googling.

I asked about my husband’s semen analysis, which he had done back in early November but we’d never heard anything about from Dr. S. The report wasn’t even in my file—he had to go out and ask one of the nurses to unearth it from somewhere. Volume, count, and motility all normal. Morphology is so-so, but he said, “We like to see at least 1/3 of the sperm with normal appearance, and you have about that, so it’s fine. A solid B-plus,” he joked.

Finally, I asked about kidney issues—I’d read online that women with UU often have a single kidney or weird kidneys, because the fetal tissue that forms the uterus also forms the kidneys. Dr. S. said, “Oh, I’m glad you mentioned that, I should have told you about that, normally I’m so OCD, but I guess I forgot. I’m glad you’re more OCD than I am today.” Ha ha. He checked the MRI report to see if they had looked at my kidneys—they hadn’t. “Normally they would call me with unicornuate uterus and ask if they should check out the kidneys, and I would say yes, but they didn’t. I should have asked them to do that.” Okay then. So I have to go to another office for a special renal ultrasound to make sure I have both kidneys and to check for horseshoe kidney (both kidneys fused together) or pelvic kidney (uh, one kidney down in the pelvis, which is useful to know about in case I need a c-section).

And that was basically that. I had written out all this other stuff to say about how I was disappointed in how my last cycle had gone, how his office fucked up the MRI precert, but I didn’t say any of it, of course. It’s hard enough having an “I’m disappointed in you” talk with someone you love, let alone your RE. Should I have said something? I don’t know.

My husband and I haven’t really talked about the appointment in depth yet—I had to run back to the office, and he has class tonight. We both need a little time to process it—he especially usually needs a couple days to process things before he can talk about them. The one thing we did talk about as I was walking him to the subway was that he is really uncomfortable with the idea of selective reduction. Born and raised Catholic, 12 years of Catholic school—even though he’s lapsed now, that doesn’t come out easily. Abortion and reduction are still difficult issues for him. I personally have no problem with reduction, but he says he just doesn’t know how we could decide which one to reduce. (I said I thought the decision was probably made based on medical criteria, but…) Anyway, I’m dead set against the idea of having twins—I was always a little apprehensive about the idea, given that I’m very very thin (5’9” and size 2—okay, feel free to hate me) and small-boned, but was resigned to the fact that ART comes with risk of multiples. But knowing what I know now, especially the things Dr.S. didn’t talk about, like the risk of uterine rupture—I just won’t risk it. And if my husband is uncomfortable with the idea of reduction, then we will have to talk to Dr. S. about not taking even the slightest risk that I will get pregnant with multiples, even if that means canceling an IUI if there are multiple follicles.

The other thing I need to contemplate is whether to stick with Dr. S. It’s getting late, so I’ll have to write more later, but as you can see and as I’ve written about already, I’m not totally happy with the organization/communication aspects of my care so far. Part of the reason I’m with this RE in the first place is because he was referred to me by (and is affiliated with the same hospital as) my ob/gyn, who I chose 2.5 years ago (when my previous ob/gyn stopped accepting insurance) primarily because she was affiliated with a hospital best known here in Big City for having a beautiful midwife-friendly birthing center. And my ob/gyn supports deliveries in the birthing center for low-risk pregnancies. I wasn’t wedded to the idea of a natural/low-intervention childbirth, but I liked knowing that the option was there, and that I might be able to have a say in how my birth experience unfolded. Now that I know that any pregnancy I have will be high-risk, and therefore that the birthing-center option is pretty much closed, why even bother staying with this hospital? It’s blocks away from my office, but maybe I’d be better off with the hospital right near my house, which is a Regional NICU center.

Anyway, food for thought. Hubs is home now, got to go be wifely.

Update, and a confession

Had my MRI yesterday afternoon. I have to admit it was kind of freaky--I made the mistake of opening my eyes for a second as I was being slid into the tube and I saw just how close above me the top of the tube was. Kept my eyes squeezed shut the whole rest of the time (including when they slid me out to inject contrast dye for the final image) and tried to do my deep abdominal yoga breathing to relax--as much as I could do while holding perfectly still, anyway. Results will be to Dr. S. by Tuesday, they said.

And now for a confession: I've been reading infertility blogs for quite a while (lurking, never commenting) and I have to admit to having felt a secret sense of superiority. I know that sounds terrible. It was reading about all the bitterness that did it. In all my innocence, having never done ART, I knew on an intellectual level--thought I understood better than most, I believed--that infertility takes a heavy emotional toll on those who experience it. And when I saw the brave women who had experienced loss after loss--whether multiple unsuccessful rounds of IUIs and IVFs, chemical pregnancies, miscarriages, etc.--I understood that they must be in so much pain, even though I couldn't possibly imagine what it was like, and I knew they had every right to be angry and bitter. But some people, who had been through less (there it is: the who's-suffered-most mentality) seemed angry and bitter all out of proportion to what they'd experienced. Only two years of infertility and you're already so bitter? I thought. That will never be me. I didn't like the resentment of every pregnant woman who passed by, the immediate leaping to the conclusion that every person with a well-meaning but ill-considered stupid comment should be eviscerated on the spot, the pathetic drowning of sorrows in chocolate. I didn't want to be like that.

God, I was insufferably holier-than-thou.

And now, after a mere year and a half of "trying" (though I've been in an infertile mental space for much longer--someday I'll write out the whole story), after a single fucked-up IUI cycle, I have had my smug superiority crushed and thrown back in my face. It's been a hard week, no doubt--I did plenty of sobbing after my last phone call with my RE's nurse (big reason my husband wants to switch doctors--he hates seeing me suffer like that and wants to eliminate the source.) But today I surprised myself. One of my closest friends, I'll call him C., called with news about another mutual friend: his wife is pregnant, of course. Just out of her first trimester. (To put this in perspective: They have been married less than a year, and have only been living on the same continent for the last 5 months.) I tried and failed to muster up some enthusiasm, which I think annoyed C., because he was so over-the-moon about it himself. Then I hung up the phone and big fat tears started sliding down my face. I hated my friends for being pregnant, hated C. for bringing me the news (he has no idea we've been going through infertility, clueless boy that he is), hated myself for being broken inside (in the emotional sense as well as the girly-bits sense). I wanted to scream at the unfairness of it all. And then I realized: I have become a Bitter Infertile. (Then I ate a huge piece of strawberry shortcake. Standing in the kitchen in my nightgown. At 3 pm.)

This sort of relates to something else I've been thinking and saying lately, that you never know what you can deal with until you're asked to deal with it. (Which is NOT the same as that "God/life doesn't give you anything you're not strong enough to handle" crap, which I do not believe at all.) Along the same lines as the secret superiority thing, I could never quite imagine being one of those women who goes through three, four, five cycles of IVF or more, or who keeps trying despite life-threatening complications in a previous pregnancy. Emotionally and financially, I could handle one round of IVF, I thought. Then I'd have to move on, probably to adoption. I just couldn't justify continuing to spend tens of thousands of dollars on something that might never work.

Then a few days ago I was talking to a friend who's had her own experience with a Mullerian duct abnormality. I was telling her about my probable unicornuate uterus diagnosis, and about the scary pregnancy statistics associated with it--as high as 40% miscarriage rate, according to some sources. And she asked me if those odds were bad enough to make me not want to risk getting pregnant at all. I told her it was way too early to tell, that I didn't know what I'd be able to deal with until I was faced with it, that if she asked me again after I'd had multiple miscarriages I might say so. That I didn't know if I could be as strong or as persistent as the women whose stories I've gotten to know on the internet, who have had miscarriage after miscarriage and keep trying.

But as I was saying this, I felt something surge inside me. I knew--knew--that just deciding not to get pregnant would never be an option for me. I want to carry and give birth to my child, and I knew in that instant that I am willing to go through five kinds of hell to make that happen.

And if IVF ends up being the only way I can get there? Then I can't swear that I wouldn't be willing to try again and again, to spend any amount of money and do whatever it takes.

Ugh

Called my RE's office this morning to schedule a Day 2 ultrasound (period arrived last night in full force). I was transferred to a nurse, who looked up my file and said she would need to check with Dr. S to see if he wanted to wait until my MRI results were in before proceeding with another cycle. I pointed out that this would mean waiting another month, at least. But whatever, fine, check with the doctor and call me back.

That was 10 am. By 3:30 I still hadn't heard back, and I called and left a message on the nurses's line. I finally got a call back at 6:45, when I was standing in the Baking and Spices aisle at Whole Foods. Luckily, it was my favorite nurse this time, the only one who actually calls back when she says she will. (The nurse from the morning never calls back.)

Long story short: Dr. S. wants to wait until the MRI results are back, then we'll schedule a followup. "But that means I'll need to wait at least another month before going ahead with anything else," I said--being as specific as I can without screaming PERIOD and OVULATION to all the Whole Foods holiday shoppers. And as forcefully and as calmly as I can while welling up--I actually think being in public helped me maintain control here--I say, "Look, I know this is not personally your fault, but I would have had the MRI done by now if your office hadn't screwed up getting the preapproval. I had it scheduled for Monday, but I had to reschedule for Friday because they didn't get the preapproval when I asked for it." Nice Nurse apologizes and says she will make sure to call Monday for my MRI results.

"You'll call?" I say. "And you'll follow up with me, or do I need to follow up? Because I have to be honest, I'm feeling kind of left out in the cold here. I haven't spoken to Dr. S. in three weeks, he never called to follow up after my last round of tests, and I'm losing a whole month because your office couldn't get it together for the preapproval." I was so proud of myself for being able to say that. Nice Nurse promises that she will leave my file on her desk so that she is sure to remember to follow up on the MRI results, and she will call me personally to schedule a followup with Dr. S.

And that's where we left it. I'm not sure what to do next. Obviously I'm not being treated this cycle. My husband pointed out that we can still try on our own, but between the screwy periods and the half a uterus, I'm losing faith in my body to get this done on its own (what little faith I might have had). I'm pissed that my doctor is taking such a laissez-faire attitude toward my treatment--we STILL haven't heard from him re: my husband's semen analysis, not to mention the fact that he never bothered to call me after my HSG results came in, leaving me to get the news about my unicornuate uterus from a doctor I'd never met before, minutes after learning that I'd ovulated on my own, early, and it was too late to even try to get pregnant this cycle. And I'm pissed that I'm losing a month--minimum; I'm assuming I'll have my usual long (when unmedicated) cycle and, even if nudged by Provera, I won't get my period until mid- to late-January--all because someone was too lazy to make one stupid phone call to get the preapproval on time.

My husband thinks we should find a new doctor. I'm leaning that way too, I guess. I'll wait and see what Dr. S. says when we see him for my followup--my husband is coming along this time, for moral support and to get pissed off if necessary. The thing is, I don't know what Dr. S. can say or do to make up for what's happened in the past two weeks, the symphony of screw-ups that's landed on me. But I feel like if he says it's worth trying another few Letrozole cycles, or even injectibles, it might be worth staying with him, at least for now--I don't feel like he would really do anything there much differently from another doctor (besides, hopefully, not missing my ovulation this time!), and the convenience of location, a 2-minute walk from my office, counts for a lot with all the monitoring. On the other hand, if he's of the opinion that we should go straight to IVF (because of lack of one fallopian tube, etc.), then I will definitely go elsewhere. I had already made up my mind long ago that if it ever came to IVF, we would shop around--my insurance only covers up to $10,000 of "advanced fertility treatment" (=IVF and related), so unless we want to try to come up with another $10 or $20K on our own, we basically only have one shot, and I would want to make sure we have the best chances possible. My clinic's success rates are pretty good, but in terms of sheer volume they don't do as many IVF cycles per year as other clinics in the area. And here in Big City, we've got one of the top IVF clinics in the nation, so I'd be a fool not to at least consider going there.

Anyway. MRI this Friday. Until then, all I can do is wait. And fret.

A philosophical question

How do you determine when your period starts?

I know that sounds stupid--either you're bleeding or you're not, right?--but bear with me. When I was on the pill (11 years straight!), my period was always very light. Like clockwork, the Tuesday morning after stopping the active pills I'd get some brown spotting. Then a couple days of darker spotting, then lighter, then done. Often I could get through the whole thing with just pantyliners, maybe a junior tampon here and there.

When I went off the pill and spironolactone (also on that for about a decade--I was diagnosed with PCOS in college) back in June 04, I started tracking my BBT and monitoring my underpants obsessively, like a good infertile. My cycle length varied wildly (45-75 days), but I nearly always got a nice temperature surge, followed by a predictable luteal phase: 10 days or so after my temp rose, I'd get a light brown spotting similar to what my period was like when I was on the pill. Three to five days later, my temp would go back down, and on that day, I'd have "real" bleeding, thick and red and heavy. I called that the first day of the new cycle.

Before I started my fucked-up Thanksgiving Letrozole cycle, I took Provera to induce a period. The nurse told me to call on the first day of my period to schedule my Day 2 or 3 ultrasound, and that with Provera, even spotting counted as the first day of your period. I got some very light spotting a few nights after my last Provera pill, and slightly heavier spotting the next day. I called the heavier spotting day Day 1.

Today is Day 25 of that cycle, during which I presumably ovulated around Day 12 or 13. I had very light, almost imperceptible spotting last night. Light spotting all day today, starting to get a little heaver now. I haven't been temping, so I don't know what my BBT is doing. So I'm wondering if I should count today as Day 1 and call for an appointment, or wait and see. I guess I'll see what happens tonight--I suppose I can always call tomorrow and tell them my period started the night before.

This is probably the least riveting blog post ever. But of course to me, the contents of my underwear are everything. I can only hope that one day I will be able to be equally boring about the content's of my baby's diapers, TMI descriptions and all.

Nothing is easy

Today is Friday. This past Tuesday, after I finally got my referral faxed to me, I made an appointment to have my MRI next Monday. The folks at the imaging center told me that my RE's office needed to get the procedure preauthorized by my insurance company, and that they needed the preauthorization number before my appointment. So I called my RE's office right away and told them this, along with exactly when my MRI appointment was, and they told me they would get it done and call me with the number.

I didn't hear anything else all week, so this morning I called my RE's office to check on the status of the preauthorization. "Um, let me check on that," said the secretary who answered the phone. Long hold. When she came back, she said, "We're going to do that today." OK. Fine.

Just now, my cell phone rang. It was someone from the imaging center. "Your doctor's office just called," she said. "They need you to reschedule your appointment."

"Oh, they do, do they?" I said. "Why is that?"

"Because they don't have the preauthorization yet, and the insurance company said they won't have a decision on it until after Monday."

Now if they had just called for the preauthorization when I requested it...but no, I'm not going to bitch about it. Any more, I mean. My new appointment is for next Friday, just in time for my period, which I was assured would not create any problems for the test.

I thought of 3 more friends who've had babies in the last 3 months, plus 2 more due in the next 3. But is there really any point in counting anymore? I mean, it's pretty much a requirement that if you're infertile (or "reproductively challenged," as I understand is the new PC way to refer to us) you have to have an abundance of fertile friends.