Next Steps and Continued Hormonal Funtimes

Hey, look, we've made it to six weeks! Good job, everybody!

Six weeks means that O is smiling (sometimes), cooing (occasionally), and extremely cute (all of the time.) It also means that I had my six weeks postpartum checkup, which ordinarily would have focused on healing Down There and birth control plans, but was a bit more interesting for me. The endometriosis that got us into this whole IVF mess is a problem that won't go away, so there are a few things we're going to continue to monitor going forward.

First of all, some good news. I passed another milestone this week: I'm off Lovenox! No more enoxaparin sodium for this girl, at least until/unless I get pregnant again. For those of you keeping score at home, this was nearly a full year of daily injections, with a few short breaks here and there. Someday I'll post the total number of needles that it took to get O from theory to reality, but for now I'm content just watching the bruises fade.

Also, the preliminary results suggest that the endometriomas have not recurred (or are pretty small if they did.) The one on the left was 4 cm right before my IVF cycle and we'll see what continued breastfeeding does to keep things quiet. I've seen it described as "natural Lupron," which would be nice since I want to avoid taking that stuff again if at all possible.

Since I had a complicated pregnancy, I also wanted to go over whether I'd have to be concerned about attempting any other pregnancies in the future. Yes, I will likely have to be on Lovenox again, but my risk of placenta previa is only slightly higher than normal and the fact that it resolved this time is a good thing. I also had some weird liver stuff that popped up on my bloodwork at the very end, but that just means they'll be on the lookout for pre-eclampsia as they would for anyone. Overall, I guess I'm not a terribly complicated patient when it comes to another pregnancy, which is nice!

Now for the tricky stuff. The endometriosis which caused my tubes to scar over and my ovaries to grow endometriomas will theoretically get worse every time I have an ovulatory cycle (though how much worse, and how much it will bother me, is kind of a question mark.) Ordinarily I would probably be prescribed a combination estrogen/progesterone birth control pill, but thanks to my DVT, I'm not a good candidate for that. I'm likely headed towards a progestin-only pill or maybe a Mirena IUD - and yes, I really am considering taking the pill despite my earlier protestations about systemic hormones. Why? Well, partially because the side effects are theoretically less problematic than the combined BCP, and partially because I can wrap my head around taking a pill if I know it's only for a short period of time.

All this to say: it's a matter of time before we're back on the IVF train. Don't think I've forgotten about those three embryos on ice, and because of a combination of family and medical factors, we're probably looking at attempting another cycle in a year. Or less. Or maybe a little bit more. There are a lot of moving parts to consider, even though we're committed to giving O a sibling - or at least trying our hardest to do so. We've been so blessed to have him, and I hope and pray that our luck continues!

Our TTC History

Okay, first things first: after another (less contentious) discussion with my RE, I am going to meet with the nurse coordinator at my clinic on Friday to discuss my concerns about the egg retrieval procedure. I get the sense that they all think I’m a crazy person and that I’m just a being a total weenie about the pain, which I would politely dispute, but at least we’re moving forward.

So – I want to give a little more background on our experience TTC in the hopes that it will make my post a few days ago seem a little less like it came out of nowhere. All the crying over the past week has made me think about how closely I associate TTC with illness, and why I’ve approached every step in this process with such crippling dread.

I mentioned that my mother had cancer recently, and it was actually her diagnosis that kicked off the entire endeavor. The night that she called to say the biopsy was positive, I turned to Harry and said, “We need to have a baby as soon as possible.” I said this because I wanted kids (I do want kids) and I couldn’t imagine our children not knowing their grandmother. And my parents want us to have kids so badly! I could just picture their faces when I would tell them, mid-chemo infusion, that I had some happy news to distract us all.

Well, Mom was diagnosed in July, I had to finish up a course of medication that would have been dangerous to a developing fetus, and I had to make an appointment with my Ob-Gyn to end our current method of birth control. Once all that was done, our first cycle officially “trying” was October 2010. Nothing happened, of course, and by January 2011 my mother was (thankfully) in remission. That month I told Harry that maybe this wasn’t the perfect time to have a child after all, and we made a tentative plan to hold off for a little while. The next month was February… Valentine’s Day was right in the middle of my cycle… and when I woke up the next morning the first thing I said to Harry was, “Well, I guess we’re back to trying for a baby!” Of course, that month was another negative.

In March, my mom had a scan that revealed the cancer might have come back, and naturally we all freaked out again. Back to Plan A, except this time with more technology: I went out and bought a basal-body thermometer and a bunch of ovulation predictor kits and joined Fertility Friend to track my cycles. When nothing had happened by June, I began to get suspicious. We had hit the nail on the head three times in a row (so to speak) and none of that carefully timed “activity” had had the slightest result. I happened to have an appointment with my regular GP, and mentioned that we were having difficulty conceiving. She reiterated the statistics about healthy couples taking 12 months on average, said that we were probably fine and should just keep doing what we were doing, but recommended that I make an appointment with my Ob-Gyn to discuss it just in case. September (!) was the earliest date the Ob-Gyn was available, although in the meantime my mother went back into remission, so that was a major relief.

The appointment with my Ob-Gyn was routine until the bimanual exam. If I may be so blunt: he had his hands in me for about 5 seconds before he said, “Hmmm…” and my blood just froze. There was a mass in my abdomen, an ultrasound revealed that I had endometriomas on both ovaries, I needed to have laparoscopic surgery, I had to find a surgeon, we set the date for late October, I watched almost disbelieving as my feet walked me towards an operating room, I lay down on the table, I put my arm out to the side for them to start the drugs in my IV, and as I felt the anesthesia start to flow I had one clear thought: This is the first time since my diagnosis that I don’t feel upset about it.

Yeah, well, when I woke up that good feeling was gone. My surgeon said that although he had taken them out, the endometriomas were likely to recur any time I had a normal menstrual cycle, so I had basically three choices for treatment going forward:
1. Pregnancy, achievable only through IVF due to my blocked Fallopian tubes
2. Long-term hormone therapy, which could be as routine as the birth control pill or could take the form of Lupron Depot
3. Do nothing, monitor me closely with routine transvaginal ultrasounds, and accept that the endometriomas will recur but might do so very slowly so an additional surgery wouldn’t be necessary for a while.

After some serious discussion with Harry, I elected to move forward with IVF. It was the only option that offered any kind of happy outcome (people love babies, right?) and even going back on the pill was likely to be a stopgap measure while we geared up for IVF. We wanted children someday, and the stars seemed to be aligning that this was our someday, so when I had recovered a bit from my surgery I made an appointment with my new RE to find out when we could start.

I have so much to be grateful for, including but not limited to access to excellent medical care, a loving partner and family, financial stability, being born in the age of assisted reproductive technologies, and four (four!) IVF cycles covered by my insurance plan. And I give thanks daily for these blessings, I really do. But when it comes to the unpleasant details of IVF, this is all I ask: please don’t expect me to be enthusiastic, excited, or knitting little baby booties while I’m waiting for yet another horrible thing to be done to my body. I mean, I've never had a giggly conversation with my husband about how much fun it would be to have a little mini-us running around. It has been a very long time since any thought I had about having children wasn’t tied in with serious illness and mortality. This is sad, and unfair, but no more unfair than anyone else’s path to infertility – and for that matter, it’s no more unfair than finding out that you’re having an unplanned pregnancy, which a huge number of people have to deal with. If we are lucky enough for this cycle to work, I will love our child fiercely and do everything in my power to give him or her the best life I can. If it doesn’t, we’ll regroup somehow, even if things seem dark at times. I know I’m not in this alone, and I am really grateful for everyone’s support – thank you for your positive comments, and in return, I’ll try to keep the positive posts coming.

Monday Morning was Almost a Relief

Hey, how was your weekend? Good? Glad to hear it. What did I do? Oh, well, I cried. I oscillated between sobbing → weeping → choking for breath → welling up during an otherwise normal conversation → doing the "ugly cry" → screaming into a pillow → sniffling behind my sunglasses in public → curling up in the fetal position on the floor. (Oh, but I did watch Downton Abbey.) I am literally hoarse today and have a sore nose from all the crying. I also got about 10 hours of sleep total between Friday night and Monday morning, because I just couldn’t stop my brain from obsessing – it finally took two antihistamines and a dramamine to knock me out at 4 AM on Saturday.

This whole “we only plan on relieving 80% of your pain during egg retrieval” thing has just opened up the floodgates on my emotions relating to IVF, and none of them are good. Let’s try to break them down one by one, just like we did with the takeout bag of medications:

1. Anger.
I don’t know why this is missing from so many of my fellow IVFers’ blogs. Aren’t you angry that you have to do this? Am I really the only one who feels this way? I titled my blog the Reluctant Infertile, but what I should have written was the F*cking Furious Infertile. I wish I could say that although my diagnosis was intially upsetting, I managed to come to terms with it and now have a positive attitude towards treatment, but this is just not true. A terrible thing has happened, and what I want to hear from my doctor is that he will do everything in his power to help me and make me as comfortable as possible, not “this is what we offer and if you don’t like it you’ll just need to find another doctor and pay out of pocket.” Why don’t I deserve 100% pain relief during surgery, huh? Why are you subjecting me to anything more than the bare minimum?

2. Self-Loathing.
You know, I probably do deserve this. I’m sure I’ve done something to cause my infertility and I don’t know why they’re bothering to relieve my pain at all. And Harry? Harry shouldn’t be part of this process at all. Harry is fine and fertile and he would be so much better off if I were just out of his life entirely. He could find someone else and be happy and procreate naturally and never have to wake up in the middle of the night to find his wife doubled over next to him in bed trying to sob as silently as possible because she can’t perform the most basic function of making another human.

3. Fear.
One unpleasant surprise from Friday’s scan is that although my ovaries are resting just fine under the influence of the leuprolide acetate, the endometriomas that caused this problem in the first place have already recurred. The one on my left ovary is actually big enough that it’s borderline whether I can go through an IVF cycle at all, and although my RE wants to proceed with this one because, he says, “we just can’t keep doing more surgeries on you,” my plan of doing one cycle and then taking off a few months to assess my options if it’s unsuccessful has gone out the window. At one point I thought there might be some light at the end of the tunnel – come Feb. 1, if I’m not pregnant, I’ll hopefully have some frozen embryos in the bank and I’ll be able to take a break from the crushing depression of infertility for a few months while we gear up for another cycle. Now it looks more like an unsuccessful cycle will end with another, more aggressive surgery, or a round of more aggressive hormone therapy, and both options are just so unpleasant to contemplate it's ridiculous.

Conspicuously missing from this list, you may notice, is any mention of excitement that the cycle might actually be successful and I might get pregnant at the end of it. Yeah. For a few weeks there I was reading stories about people’s joy when they discovered they were expecting, and thinking that this whole baby thing was pretty great, but I’m just so upset right now I can’t see straight. Oh, and in case you were wondering about my last post, the official word is that Harry is not allowed in the room during my egg retrieval. And because of the way my insurance coverage is structured, this is the only clinic that they will reimburse for my IVF expenses – remember when I said that I had a very generous four cycles covered? There’s a catch, and this is it. I have until Friday to figure out some kind of plan.

No, Infertility is not Cancer

One possible outcome of my surgery, though remote, was that the endometriomas would actually turn out to be cancer. Everyone, from the ultrasound tech to the radiologist who officially read the scan to my Ob-Gyn to my new RE, assured me that it was very unlikely. But it was there.

I was very relieved upon waking up from surgery to find that all signs pointed to your garden-variety, non-malignant, problematic-but-not-immediately-life-threatening endometriosis. I was even happier when the pathology report came back a few days later to confirm definitively that the tissue removed was not cancerous. But as I've written before, my diagnosis of advanced endometriosis, blocked Fallopian tubes, and the advice I got to start IVF immediately was incredibly upsetting, and I want to explain why.

Last year, my mother was diagnosed with cancer. I will save you the suspense and say that she's just fine, she's been in remission for a while, and her doctors think she's likely to stay that way for a long time. But starting on the day of her biopsy, the entire family went through a journey that is best described simply as traumatic. I watched poison be injected directly into her chest and shaved her head during chemo. For six months, we all dove headfirst into the experience of cancer treatment and swam around in that darkness. There were lots of cliches, lots of tears, and lots of celebration when she was finally declared to be done with treatment.

When I first found out that something was wrong with me - when we were still at the stage of "we don't know what's in my belly, but it sure isn't good" - I slipped right back into the same pattern as when my mom was diagnosed. Learn as much as possible about the disease, the treatment options, the doctors who will be involved. Skip virtuously past the blogs and message boards, spend some time on PubMed and UpToDate for more "official" information, then wait until 3 AM to go right back to reading blogs and message boards. How were other people diagnosed? How were they treated? How did they cope? What was the outcome? How bad is this really going to be for me, for the people I love? What does the future look like now that this has happened?

I am very, very grateful that after my surgery I was diagnosed with infertility and not cancer. I feel so lucky that it's a condition that might change my life but doesn't threaten it. But I also recognize that I am treating my infertility journey differently than I might have if I hadn't been through the experience of serious illness in the family so recently. I'm much more anxious about everything relating to medical care than I used to be. I have less patience with doctors, nurses, and office staff. I hyperventilate when I see needles, IV bags, hospital gowns, those socks with little rubber treads on the bottom. And I am using the same coping mechanisms that I did when my mom was sick: get a calendar and write out every treatment date. Circle in red the day that everything will be done, regardless of the outcome. Exercise as often as possible to relieve stress. Apologize to my husband in advance for snapping at him. Focus on positive things that have nothing to do with illness or disease. Wait, wait, wait for it to be over.

And to those who are still struggling with cancer in any way or at any level - hang in there. You are not alone. Be strong.

How We Got Here

I remember interviewing for a college that I didn't really want to attend with a man who was a total pompous ass. He said several nasty and arrogant things to me before we even sat down for the formal interview, and then his first question was "So, how did you get here?" Irritated, I snapped back, "In a car."

I was not offered admission to his school.

This is perhaps not the best anecdote with which to begin an acquaintance, even one conducted solely over the Internet. But if you're reading this, you just might be infertile too, and I'll bet you can relate. How do you think I got here? No one starts blogging about infertility for fun. Being declared infertile usually means lots of painful and embarrassing tests, sleepless nights, urine-soaked sticks filling up your trash can, and probably at least one conversation with a doctor where you had to clear your throat a few times before you could continue speaking. Oh, and let's not forget the hours devoted to asking Dr. Google for some advice, or scrolling obsessively through the archives of a stranger's blog hoping that you can find someone just like you who had the same diagnosis, same treatment protocol, and a happy outcome. It is in thanks to those bloggers who have come before me that I have started writing about my own experience. Ladies, you made my productivity at work plummet, but you also gave me hope, made me laugh, and it is an honor to add my voice to yours.

So, where do we start? I'm 28 years old, I'm married to a wonderful man who we will call Harry, and I have endometriosis and blocked Fallopian tubes. (Oh, and I did get here in a car.) We tried to get pregnant naturally for 11 months before my Ob-Gyn discovered a major problem at what should have been a routine annual appointment: a mass in my belly that required further evaluation by ultrasound. A week later, the ultrasound tech waited about 15 seconds after inserting the wand to tell me I had a large endometrioma (9 cm.) on my left ovary and a smaller one (4 cm.) on my right ovary. I asked what that meant exactly and he stage-whispered, "You didn't hear it from me, but you're looking at laparoscopic surgery."

Laparoscopic surgery didn't sound all that bad at first. A few incisions below the bikini line, a couple of days off work, lots of movies and magazines and soup, and then we'd evaluate our reproductive options. Yes, the size of the cysts indicated that I had probably had endometriosis for a long time, but I wasn't in constant pain like some women experience, and I was in otherwise good health. I figured that after the surgery we'd probably try Clomid, maybe have an IUI or two, and someday if things got really desperate we'd be told our best option was to move on to IVF.

Nope! I woke up from the surgery to hear my doctor say that although there were no complications, and I had been able to keep both ovaries, my Fallopian tubes were irreversibly and completely blocked by scarring from the endometriosis. If we wanted to have children, the only thing we could do was move directly to IVF. At the time I was fighting the simultaneous urges to sleep and throw up, so it's not like we had a very long chat, but I was awake enough to be devastated. The process of going through surgery was itself surprisingly upsetting, and waking up to bad news... well. And yes, IVF was bad news to my ears. To me, hearing "IVF" meant that something was terribly wrong with my body, that I would have to endure pain and discomfort and financial burden that most people never need to consider, and that there was a pretty decent chance at the end of the day that we would genuinely fail in this endeavor.

One tough thing in all of this is that even the few people who knew about my surgery and its outcome were sympathetic because they assumed I was just upset that I wouldn't be able to have children. I am, of course. Reproducing is a big deal to us mammals, and I - like anyone - would love to hold my own live young in my arms. Except for one little problem.

Midway through our year of TTC the old-fashioned way, I came to a realization: I'm not all that crazy about the idea of having a baby right now. I love my husband, and we are financially stable, and our apartment even has a second bedroom... but I kind of wanted to do other things first. Like maybe get my PhD. Or write a novel. Or live abroad. It's okay that this is taking a while, I told him. It could be that there's a higher power who knows that this isn't the perfect time for us to have a baby.

Except now, post-surgery, medical science has decreed that this is the ONLY, BEST, MOST PERFECT time for us to have a baby or three. I'm 28, and my ovarian reserve numbers look good even after surgery. My insurance covers a very generous four rounds of IVF. The fertility clinic is two stoplights away from my work. And I'm going to delay this because I think it might be kind of fun to live in London for a year, assuming that we could find jobs and an apartment and get the right kind of visas and figure out the difference between a crumpet and a strumpet?

So, IVF it is. I'm clutching a copy of my CD3 bloodwork in one hand and my sonohysterogram results in another. I start injecting myself with hormones on December 12th. I might be a mother by this time next year, or maybe never. Here we go.