[Caution! Long post, potential triggers, lots of whining. Don’t say you weren’t warned.]
It’s now been over a month since I got the all-clear after my ectopic pregnancy, back in November, and now that I’ve had time to recover, and start to process everything that happened, I thought I’d post a bit of an update, for those of you who’ve asked. I really hope this isn’t awkward, but I suspect it probably will be, so, as always feel free to skip this one…
So, the good news is that, physically at least, I seem to be pretty much back to normal after the whole experience. Emotionally, too, I feel almost embarrassingly normal. I say “embarrassing”: I know I should probably still be feeling devastated, but the fact is, an ectopic pregnancy doesn’t feel remotely like a “real” pregnancy – or, at least, it didn’t for me. In fact, because I was diagnosed so early, and had known right from the start that there was something very wrong, the whole experience felt more like an illness than anything else – and when it was finally over, almost two months later, my main emotion was relief. I know that’s probably awful of me, but it was such a horrific experience that being able to get back to normal life, and not having to constantly attend hospital appointments, and worry about what might happen next really has been the best medicine for me. I’ve been working hard, doing my best to stay busy, and generally just trying to enjoy life again, without any of the anxiety which ruined November and December. So, things are good…
You just knew there had to be a “but”, didn’t you?
As well as being a very traumatic experience in itself, ectopic pregnancy has huge implications for the health – or even likelihood – of future pregnancies. Around 30% of women find that they’re infertile after experiencing an ectopic: of the ones who aren’t, meanwhile, around 1 in 10 will go on to experience another one. To put this in context, within the general population, the risk of ectopic pregnancy is just 1 in 100: to me, that seems like a HUGE increase in risk… and it’s just not one I’m sure I’m willing to take.
I mean, I’m sure most people feel apprehensive when faced with the prospect of being rendered unconscious and then sliced open with a sharp knife, so it’s impossible for me to explain how all-consuming this fear is for me, or how far I would go to avoid it. I’ve literally spent almost my entire adult life worrying about the very situation I found myself in last November: I know that probably seems odd to a lot of you, because many people haven’t even heard of ectopic pregnancy, let alone spent years and years of their lives worrying about it, but my mum had an ectopic pregnancy a couple of years after I was born and, because of that, I’d grown up, not just knowing that it was possible for a pregnancy to develop outside the womb, but feeling that, in my case, it was also probable that it would happen. There was no real reason for me to worry so excessively about this: yes, my age did elevate my risk slightly, but the main reason for my fear was simply down to heath anxiety – which leads you to believe that the worst case scenario is always the one you’ll end up with.
When the doctor told me that worst-case scenario WAS, in fact, the one I’d ended up with, then, and that surgery was one of the options to remove it, I was so terrified that I told her I would literally rather die – and, at the time, I honestly meant it. I really wish I could say I didn’t, and that it was just the stress of the moment, or whatever, but the idea of surgery is SO frightening to me, that that was how I felt. (And if I HAD ended up having to have surgery, I was planning to ask them to do it under a spinal block, rather than a general. THAT’S how scared I was.) Yes, I am very aware of how utterly irrational that is, but that’s the thing about phobias, isn’t it? They’re NOT rational, and there is no way to rationalise someone out of them.
Actually, I think the word “phobia” is over-used, and misunderstood by a lot of people. People tend to say they have a “phobia” when they simply feel afraid of something, but a true phobia goes far beyond “feeling a bit scared” – it involves a powerful fight-or-flight response, and, in my case, “flight” is normally the winner. I will do anything to avoid the things I’m phobic about (crustaceans and general anaesthetics, just FYI), which is why my experience last year was, without a doubt, the worst thing that I’ve ever gone through.
I found out I was pregnant at the start of November: I was given the all-clear just a few days before what would have been my 12-week scan. I spent almost two full months knowing that the pregnancy wasn’t viable, knowing that it could, quite literally, kill me, and with the threat of surgery constantly hanging over me: it was horrific.
Now, the fact is, the experience of an ectopic pregnancy is horrific for anyone who has to go through it. Even women with no history of anxiety, and no fear of hospitals, etc, find themselves utterly traumatised by it: in fact, many of the women who have the option of being treated with methotrexate, as I was, opt to have the surgery instead, just so they can get it over with. Others, meanwhile, don’t even have that choice: because what I know now, from all of the various support groups I’ve since joined, is that, despite how awful it all was, I was actually very, very lucky.
And, I mean, obviously “lucky” is not a word that’s really appropriate here, is it? All the same, it could have been SO much worse. Because my ectopic was caught at the earliest possible stage (When I had my scan, the ectopic was so tiny the sonographer could barely see it: she was using the most high-tech, super close-up scanning technology available, and she told me she STILL couldn’t be 100% sure that it wasn’t just a shadow, or a completely normal part of the body), and was not growing at the normal rate, I was able to avoid surgery (although, even then, I was told that there was still a possibility that the tube would rupture, and I’d need it anyway…). Many women with ectopics aren’t so fortunate: either the ectopic is so large, or growing so quickly, that they end up losing an ovary, or a fallopian tube, or it ruptures, causing a huge amount of pain, and, of course, a risk of death from internal bleeding. In fact, if the internet is to be believed (and, rationally I know it isn’t, but it’s hard to just dismiss all of the horror stories…), I’m pretty much the only person in the world to have been successfully treated with methotrexate, and everyone else just wakes up in the back of an ambulance, having collapsed due to the immense pain, before being rushed into surgery, mere minutes from death. Which, yikes.
(Side note: this is why you shouldn’t ever Google the words ”ectopic pregnancy story” if you’re pregnant, or hoping to one day BE pregnant: trust me on this…)
I was lucky. There’s no guarantee that I would be again, though, and if I DID have another ectopic, there’s every chance that next time it could be in a different location, growing faster, or be undetectable until it was too late. Which, quite honestly, scares the living daylights out of me, and makes me wake up in the night, panicking at the very thought of it.
On the other hand, though, there’s ALSO a chance that NONE of this might happen. A 10% risk of ectopic pregnancy means there’s a 90% chance of having a NORMAL pregnancy. Those aren’t great odds, as far as I’m concerned, but they’re not TERRIBLE, either. And, of course, statistics can be misleading, can’t they? The problem with the statistics relating to ectopic pregnancy, for instance, is that they take into account ALL ectopic pregnancies: so my tiny, caught-early, successfully-treated-without-surgery, no-real-indication -of-why-it-happened ectopic is lumped in with those which were caused by known issues with the tubes or ovaries, and which resulted in removal of one or both. Which makes deciding whether or not to try again even harder.
In the very early days of my ectopic, when we still thought it was “just” a miscarriage, we spoke to the Early Pregnancy Unit at the hospital, and asked if there were any tests they could run to give me an idea of why this had happened to me. “NO,” was the short answer to that. There ARE tests, of course: but, the fact is, the NHS doesn’t consider two miscarriages in a row, even at my age, to be indicative of a definite problem. They acknowledge that there COULD be an underlying issue, obviously, but as miscarriage is so incredibly common, most of the time they’ll attribute it to “bad luck”. Where I live, you have to have THREE miscarriages in a row (At least, this is the case in our area: I know it’s different in other places.) before they’ll start to do any kind of testing at all. And, of course, mine turned out NOT to be a miscarriage, so I now have “just” one miscarriage under my belt, and one ectopic – which, it turns out, there’s no real testing for, either.
When I was discharged from hospital, at the end of December, we asked if there would be any follow-up, or any way to try to establish why this happened to me. Again, the answer was no: I was told that, if I DID become pregnant again (Which I was told to avoid for 3 months/ 2 cycles after having the shot), I should call the hospital immediately, and I would be closely monitored right from the very start… but there’s no way to find out why it happened, and no way to mitigate the chances of it happening again. So, it’s basically a case of, “Well, just take this massive risk, and let us know how that works out for you!” Awesome.
And this is the decision we now have to make: do we take that risk, or do we simply accept that it’s not meant to be, and move on?
If there was a way to guarantee that it wouldn’t happen again, we would definitely try again: no question. As it is, however, I’m left feeling like the decision to try again would be a little bit like playing Russian Roulette, and just hoping the barrel wasn’t loaded this time – even although I know it most definitely IS.
What I DON’T know, on the other hand, is just how many barrels I’m dealing with here: they could ALL be loaded (Which would make the decision a no-brainer, obviously), or it could be none. I just don’t know, because while I’m told I have a 1 in 10 chance of another ectopic, that figure is an average, based, in part, on experiences which were completely different from mine, and therefore not particularly relevant. You can’t really compare someone whose tube ruptured at 8 weeks, say, and who required surgery to remove it, with someone diagnosed at 5 weeks, and successfully treated with methotrexate: the two are just not the same. Equally, you can’t compare someone whose tubes were blocked due to severe endometriosis, to someone with no physical issues, who was just the victim of chance. The statistics DO compare those different situations, though, and lump them together, which makes it hard to know what the ACTUAL risk is to an individual.
I know from the ultrasounds I had done (which looked very closely at the fallopian tubes and ovaries) that there doesn’t APPEAR to be any physical problem: everything looked “normal”, according to those ultrasounds, but that doesn’t necessarily mean there’s less risk. The ectopic itself could have caused scarring, which would be problematic in the future, or the tubes could be blocked in a way that wasn’t visible on the ultrasound. I’ve also read about hormonal imbalances which can make an ectopic more likely, and which, if detected, might give us a clearer idea of my actual risk.
Finally, there’s a test called an HSG, in which ink is injected into the fallopian tubes, in a bid to identify any blockages. This, quite honestly, sounds absolutely horrific to me, and I’m not sure I’d be able to face it just yet, but it’s one more thing that could potentially give us some answers, so the current plan is to speak to my consultant, in a bid to discuss our options and find out if there’s anything they can do to give me an idea of what went wrong, and what the likelihood is of it happening again.
Of course, going back to hospital to have the HSG test, or even just for another blood test, would be such an ordeal for me that I’m honestly not sure I’m up to it. And, the fact is, even in the best case scenario, I know that a positive pregnancy test wouldn’t be a cause for celebration: instead, it would mean an immediate trip to the hospital, and then a repeat of the worst anxiety of my life, as we attempted to establish if it was another ectopic, and how to deal with it, if so. Even if it wasn’t, meanwhile, there’s still the possibility of miscarriage, plus the small matter of my lifelong fear of pregnancy and childbirth, which would make even a textbook pregnancy incredibly difficult for me. These are the reasons I spent most of my adult life resolutely child free, after all, and it’s hard not to take last year’s experiences as confirmation of the fact that I was right to do that, because pregnancy really is every bit as risky and traumatic as I’d always thought it would be.
Can I put myself through all of that? Honestly, I don’t really think so. But, at the same time, I’m haunted by the idea that time is running out: that the third time may well be the charm, and that if we DON’T try again, I might end up regretting it in a few years time. If I were younger, I’d probably be saying, “Well, let’s wait a few years, and see how we feel then.” I don’t have a few years, though: in fact, I probably don’t even have a few MONTHS. At my age, if we decide we do want to try again, we’d have to make that decision ASAP – and that’s a pretty daunting thought.
Er, I have no idea how to end this post now: I know no one can make the decision for me (For what it’s worth, Terry would like to try again, but knows how risky and difficult that could be for me, so he’s not going to try to talk me into it if I decide I can’t do it. He obviously has his own thoughts on all of this, and it’s not my place to put those thoughts on the internet, but suffice to say that we’ve been talking about it a lot, we’ll make the decision together, and there’s no pressure from him either way.), or even really advise me, but I wanted to just write all this down, as a way of processing it, and because some people have asked about where we might go from here. I debated about whether or not to post it, but ultimately it’s part of my story, and I guess it would feel a bit odd to me to have spoken so openly about everything that happened, and then just never mention it again. (Er, wouldn’t it?)
Finally, because I know someone is going to bring up therapy: yes, it’s something I’m planning to raise with my doctor, but it’s also something I’m not holding out a whole lot of hope for. I know most people swear by it, but the problem for people with health anxiety is that accessing help generally involves speaking to doctors, visiting hospitals, and generally doing a lot of things that the anxiety makes 100x harder. In other words, I’d have to conquer my health anxiety in order to get help for it – Catch-22. I could go private, and find an option that doesn’t involve hospitals, etc, (Although I honestly don’t know if we could afford it), but – and I know I’ll be criticised for saying this – I’m kind of reluctant to do that, because I haven’t found therapy helpful in the past. I find that I just start crying when faced with any kind of counselling situation: and although I can write about what I’m feeling, I’m completely unable to articulate those thoughts in person – I just feel awkward and embarrassed, and leave feeling worse than when I arrived. I’m sure there is a way around this, but I’m also pretty sure that therapy isn’t going to offer a quick fix: right now, I feel like it could take years of therapy for me to even start to get over these fears I have, and, as I said, I don’t really have years , unfortunately.
(Meanwhile, the online support groups aren’t a whole lot of help either, because, as well as being filled with scary stories, they also seem to rely quite heavily on ideas like, “What’s for you won’t pass you by,” or “You just have to stay positive!” – neither of which are of any help to me whatsoever.)
So, that’s where we’re at. How’s your week going?