The Anatomy of an Ectopic Pregnancy

ectopic_spring2017

Presenting — the anatomy of my ectopic pregnancy, i.e. a pretty visualization of my last couple of months of hell. I’ve been looking forward to writing this post for a while. I’m weird, I know. It’s hopefully relatively self-explanatory — red bars are bleeding (with pretty-fied,  realistic colors), blue are the meds, progesterone in purple, and of course, the all important HCG in black.

The highlights:

  • Damn, this whole ordeal took forever. Start to end was 78 days. That’s 2.5 months!
  • The bleeding was like twice as heavy as a normal period. Cramped like crazy though. Good to know for a hopefully never-again-occurring next time.
  • What goes up must come down — HCG rises pretty fast. Once the methotrexate kicked in, it lowered pretty fast too though towards the end, there was some sort of half life effect going on.
  • The progesterone dropping — that should have been a sign that something wasn’t right. Later on, I found out that increasing HCG not accompanied by a corresponding increase in progesterone is one of the warning signs for an ectopic.
  • It’s strange to me just how long I would have tested as pregnant after I wasn’t. It took an entire month after the first shot to be fully un-pregnant. Is that a thing?
  • Apparently the starting HCG of ~10 is on the low side and often does not correlate to success (according to my RE). Something to keep in mind for the future.
  • It all looks so innocuous in all these pastel-y spring-y colors.

I’ve been getting more and more into these personal data visualizations (I hesitate to call them analyses on a sample size of .. me). But also, during the last few months, I realized that I didn’t have enough of a sense of what was going on for my own comfort. I didn’t have a sense of a baseline or what to expect. Anything I read/was told went all over the place. For example, bleeding could last anywhere from a week to 6 weeks. That’s an awfully wide range.

At any rate, this (and the lack of any tracking app/software for this type of thing) was the impetus for me to start building my own tracking — I turned to my trusty raw text files and R for the plotting (clearly, I’m very high tech). Obviously it’s not perfect (yes, I know that multiple axes are a bad idea) but I liked how it gave me a high level visualization of what was going on with my body. And it made a ridiculously shitty experience into, not a positive experience, but at least an interesting one.

#MicroblogMonday: Telling family

Oddly I found it harder to ‘come out’ to family than to friends. Perhaps because it involves acknowledging the existence of sex which is something we go out of our way to avoid with our parents.

My mom knew from back when I was diagnosed with PCOS – I was young enough that she was the one who took me to a gynec. Presumably she told my dad? I’ve always known that he knows about things but I rarely tell him myself. But we didn’t tell my parents we were trying up until we were actually starting treatments. Mostly it felt too awkward and anyways, what could they do or say? Still, since then they’ve been nothing but supportive, especially since my mom was here during my last cycle and the ectopic so she could see the drain of all of it.

In-laws — well, we finally told them when we were trying to make them understand why we weren’t planning on trip to visit then and instead wanted them to come visit us. They don’t live in the same country so a trip to visit them is usually at least 3 weeks. I couldn’t fathom losing (potentially multiple) cycles because we were traveling. To give them credit, the moment we told them, they immediately asked, “ok, when is best for us to visit?” Actually, I think they were just relieved that I wasn’t high-powered-career-woman-who-never-wants-kids. With the ectopic.. well, I never talked to them about it. My husband told them and then no one mentioned it again (which is what I wanted).

So both sets of parents know but none really knows any details. And all of them largely take our lead — if we want to talk, they’re willing to listen but they don’t bring it up.

As for extended family, we have no plans to tell anyone. Either we’d get a lot of (already known and unnecessary) advice or “well, my daughter had a hard time. she was trying for 3 whole months!” stories or “it’s not in God’s plan” stories. None of which are remotely comforting. Last time we visited, I told my husband that if any of extended family asks about kids, I’d talk to them very explicitly about ovulation or timing sex. Thankfully I never had to carry through with that threat (because I probably wouldn’t have had the guts to)!

Conversations with H

I never got around to introducing hubby. Well, for purposes of this blog, I’m going to call him H (for hubby. very imaginative, I know). Like most couples we have our ups and downs but every so often I remember exactly why we’re perfect for each other.

So after the methotrexate shot, we were both upset. There wasn’t really much else we could do but we went from being joyful to confused to just plain sad in a very short span of time (well, and scared). At some point he turns to me and says, “You know, this kid probably would have ended up being lame anyways – he couldn’t even find his way to the uterus properly! Our next kid won’t be like this.” And it was irreverent maybe but it just captured so perfectly how this wasn’t the baby we were meant to have. It’s unbelievably sad but eventually, we will have the child we’re meant to have.

#MicroblogMondays: Invisible struggles

For all that I’ve been very open with some of my friends, I’ve been very closed with others. And it made me realize that some of my choices/things I do don’t actually make sense to an outsider who doesn’t know anything about my struggles.

For instance, I recently made the decision to regularly hire a cleaning person. Now, we don’t have a huge place so, can I clean it myself — yes, of course. But during the IUI cycles and then the ectopic treatment, I was on a no heavy duty work regime (the only good thing about all this if you ask me). And my husband’s already taking on a lot (plus, he’s totally a procrastinator so by the time he actually cleans the bathroom, it’s been ages of  nagging). So eventually, I decided to outsource for the sake of our sanity. And I’m starting to increasingly do that with a lot of non-career and non-fertility related work — either outsource or just ignore.

I was visiting a friend with an infant and they were talking about how hard it is that none of the work ever goes away and they’ve had to get comfortable with a never disappearing list of tasks. And I could tell they were wondering what I had to complain about since there were no babies in the picture. But without knowing what I’m going through, they have no way of realizing that my life is damn hard in a very different way.

This whole experience has (I hope) made me more aware of different struggles people go through. Just because it’s not visible on the outside doesn’t mean that someone isn’t dealing with their own shit and it’s not always easy to understand their motivations and where they’re coming from.

PS – Look what I got from my RE’s office! Perfect timing.

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Telling friends

I’ve always been a strong believer in more information is better for people – it helps them evaluate their own information better and feel less isolated. As a young adult, I realized that when I revealed some personal information of my own, it was usually followed up with, “oh, I felt that too!”‘s. Clearly I was meant for the facebook era. Still, I’ve been more circumspect about my infertility struggles – if nothing else, I wasn’t the only party involved.

I was diagnosed with PCOS in my pre-hubby days. I talked about it to some of my friends back then – it’s easy enough to say that you have PCOS without the context of trying to get pregnant (especially when we were all right out of college and trying to make our careers). I even told my husband the day he asked me out (“So, I was diagnosed with this thing called PCOS. And it’s a major cause of infertility. Still want to date me?”).

But in spite of knowing this, when we actually started trying, it was really miserable. We didn’t tell anyone and I’d end up sobbing every time I got my period. That did not lead to a particularly happy relationship – his relaxed attitude only stressed me out more. Eventually I realized that the lack of alternate venting outlet was making it worse. So I slowly started opening up. I started with a friend who I knew had IUI treatments and asked her what the process was like. I talked to a much older friend who I suspected had fertility issues to see if she or her friends might have tried something like clomid.

As my friends started announcing pregnancies, I started revealing that we were trying. I’ve found that, even if expecting themselves, many people can still empathize if only because they’ve seen some small part of it — maybe they were trying for several months and so they could extrapolate how bad it would be to be trying for years, maybe they had a miscarriage, maybe they had some early indicators of a miscarriage and spent the first few months on tenterhooks, maybe they had family who went through it. Some were told after they said something like, “oh I was expecting certain other news from you guys” at which point, I’d launch into my saga.

I’m usually careful about whom I reveal it to, gauging our level of friendship and whether they’d be sympathetic and discrete. For some, it has actually brought us closer. For others, it has told me that we weren’t such good friends after all. Two years into ttc,  most of our friends know. Some still don’t react well, some still say the weirdest things,  some just ignore it and some treat it like it’s this contagious disease. But I have at least a few people in my camp who are always willing to listen and come out with me for an ice cream to cheer me up.

EDIT: I realized that one reason it’s been a bit easier to tell friends is that we’re on the early side of baby-making in our circles (in spite of being > 30). So I can often couch revealing in terms of “here’s a brain dump of all the information I’ve collected about human reproduction.” Anyone with half a brain would figure out that there’s a reason I know so much but I can then avoiding explicitly revealing information.

Life as usual

In more side effects, I think the methotrexate is causing some fair to fall out. Or maybe it’s all the hormones. Or the decrease in them. Who knows. Hopefully it’ll grow back eventually.

In some ways I’m lucky that all this happened during a lull period work wise – I have a new job set up and I’m in the wrapping up phase of my thesis. Now I’m having to get back to work and some days find it awfully hard to concentrate. I have a talk to give at my new lab next week. That’s going to be an interesting challenge – my to-be-PI is in a very different field so I need to figure out how to pitch my work to a non-my-field audience.

I think I’m getting a little too distracted by fertility related stuff right now. Oddly I find is less stressful and easier to not obsess when I’m actually on a treatment cycle. During those times, I know roughly what to expect and someone else (ie the clinic) is directing my fertility-life. Now, I’m trying not to spend too much time reading. I still have a lot of questions that I’m uncertain of – some related to recovery after an ectopic and some in trying to figure out next steps. One thing I wish the nurses and the clinic would give me is a better sense of what to expect. Like how much/how long will the bleeding continue for after the methotrexate? When should I expect a period? Would it be a normal period?

I’m also rather concerned about how to handle the next treatment cycle. The 3-month ban puts at August for starting to try again. Which is also when I’m going to be starting my postdoc. I’d be fine handling an IUI with a new job – I know what to expect and the side effects are manageable. But IVF — for some reason IVF terrifies me. Maybe it’s the thought of surgery. Or anesthesia. Or having to give myself that many shots. Or just the sheer quantity of hormones in my system. And it’s definitely making me nervous starting all that at the same time as a new job. Then again, why am I planning my personal life around my work life so carefully? It seems like a dumb reason to hold off trying to kids. So .. I don’t know. I think we’ll definitely do the HSG to check if/how badly my tubes were affected. And re-evaluate after that.

In other things I’ve been obsessing over, I spent way too much time yesterday trying to visualize my last cycle — what all the components were, how things changed, when I knew things. I think any data visualization person would lambast it — there is way too much information and multiple scales and generally, too much going on. But I kinda like seeing it all in one place. It was actually weirdly cathartic – I suppose it made an emotional experience more of a playing-with-data one.

It’s the little things

For all my gloom on this blog, I’m not quite spending all my time in a funk. Definitely I have times (sometimes even days) when I’m sad, when I’m bitter, when I’m exhausted. But there are also plenty of times when I’m enjoying life. I got the all-clear for very light exercise so I’m starting light yoga now. And yesterday, I got myself ice cream. And all the chai and coffee that I’m enjoying. Not to mention running yolks. Because why not enjoy the things that I wasn’t allowed. I spent several hours laughing over a hilarious movie my mom and I were watching. So.. life isn’t all bad. And the small moments are the ones that make it, I think.

Speaking of my mom, I feel like I do have to acknowledge how helpful she’s been. She’s known we’ve been going through treatments but I think didn’t really understand how time consuming and draining it all was until she visited. It so happened that she was visiting during this cycle and her trip got extended when we discovered the ectopic. Mostly, I’m just incredibly thankful that she was here and was able to take over so much. I’ve been having good home cooked food each day. I haven’t had to worry about having to run to the ER alone in case something happened (in retrospect, I think the nurses emphasized that a bit too much). And it’s just been nice to be able to share my thoughts, good and bad and all the stuff in between.

#MicroblogMondays: Spring as a time of loss

For years now, I’ve felt bittersweet about spring, in spite of all the renewal, growth, life, and sunshine outside. I suppose it started when I left college where spring represented my farewell to my childhood and so many friendships. And ever since, graduation-time has been a bittersweet (some years more bitter than sweet) as I’ve plodded along with my PhD, still not nearing completion and envious of those who had easier paths through.

This year, well this year is when I thought that would change. I’m finally finishing up my degree. And this time, leaving university is less painful and more relief at finally moving on and excitement (and some anxiety) about next steps.

And added to that, I found out that I was pregnant. What better way to acknowledge life and moving on in both the outside world and the inside! But as it turned out, things didn’t work out that way. And spring is still more associated with loss than with renewal and hope.

Sigh of relief

HCG went down enough that I don’t need surgery! It seems so strange to be happy about something that’s also so sad but I suppose it’s less happiness and more relief that this ordeal is winding down. Now it’s just a matter of monitoring until HCG is back below 0.

The cramping wasn’t too bad this week – I think most of what needed to get out already did. I’m super tired though – the type of tired I typically get when on provera. I guess that’s part of the Methotrexate side effects.