Ectopic Pregnancy - The Long Game

You’ll scan over anything relating to ectopics in your pregnancy books and articles because it’s, well, just so rare. As it turns out, for 50% of women who experience an ectopic pregnancy, there will be no reason whatsoever.

Pregnancy Test

Heartbreaking stories. Devastating stories. The miscarriage story needs to change. That's why we've created Tommy's book of #misCOURAGE. Read this story now and help spread the word that miscarriage can no longer be ignored. Help us change the story to save babies' lives.

Donate
Up

August 2016

Emma

Ectopic pregnancy is nearly always paired up with words like ‘medical emergency’ and ‘immediate risk to mother’s life’. But it’s not always about blue lights – or for those with known risk factors. 

Ectopic pregnancies, where the embryo develops outside of the uterus (usually in one of the fallopian tubes) is relatively uncommon and affects between around 1 in 80 and 1 in 100 pregnancies in the UK. It’s also one of those conditions where, if you’re like me – no endometriosis, no pelvic inflammatory disease, under 40, in generally good health with no previous gynaecological issues – you’ll scan over anything relating to ectopics in your pregnancy books and articles because it’s, well, just so rare. As it turns out, for 50% of women who experience an ectopic pregnancy, there will be no reason whatsoever. 

I associated it with emergency. I’ve known of only one person who has experienced it and that was a flight-needing-to-be-diverted emergency. But that’s not how it happened to me. 

We found out we were expecting while on holiday, a few days after Christmas. A few days later I experienced some very light spotting. It scared me – it’s the last thing you expect to see when you’re thinking about how you keep this your happy secret while you’re with your extended family at an all-inclusive resort with free-flowing rum – but I managed to do enough Googling to reassure myself that although no, probably not normal, it certainly wasn’t uncommon. A trip to the GP when I arrived back in the UK reassured me further – no pain and no further symptoms suggested all was well, but that we’d have the Early Pregnancy Unit scan me just to be on the safe side. 

My very excited father-to-be husband had started asking which scans are the ones he should come to. We debated this one for a while; it was likely to be an internal scan, and his gynaecological squeamishness existed on an absolute need-to-know basis. But when he learnt there’d most likely be a heartbeat we’d be able to see, there was no way he was missing it. 

The EPU had had two emergencies on the morning of our appointment. Emergencies like ectopic pregnancies, I supposed. Emergencies that needed dealing with instantly before they risked the mother’s health. We sat in the waiting room happily, making plans with friends for forthcoming weekends, mapping out the weekends we’d be able to tell our families our happy news, laughing at potential names we were plucking out of The Times.

Our sonographer was friendly enough. Took a brief history, had me lay down. And then there was a silence, once she started scanning, that seemed to last forever. My husband and I both staring at the screen like we knew what we were supposed to be looking at, I finally joked ‘Is there anything there?’

‘No. There’s nothing there. Your cavity is empty.’

What followed is a blur. The sonographer, quite rightly, was several steps ahead of us: the pregnancy wasn’t in my uterus, so she needed to work out exactly where it was. I, still stumbling over the news that there was no baby developing inside me, lay there sobbing.

Devastated, shocked and very confused – I even had a moment where I thought maybe I wasn’t pregnant. I distinctly remember lying there feeling absolutely mortified.How stupid of me to have come in here and wasted these medics’ time, and to have been following my embryo’s development these past few weeks – lentil to blueberry, heartbeat, eyes and ears – when you were never pregnant at all! That all exited in an adamantly defensive ‘But how can that be when I’ve had two positive tests?’

The sonographer back-pedalled a little, told me very gently that yes, there’s no doubt that I’m pregnant, or that I was pregnant, but that it is either developing somewhere it shouldn’t be, or it has already aborted itself. 

She called her consultant in, who carried out a second scan. Neither of them were able to see anything conclusive. They had found a large area of fluid, which caused them some concern, but they had no evidence to diagnose either an ectopic pregnancy, or a missed miscarriage (where the pregnancy has stopped developing of its own accord, but you’ve had no bleeding, pain or other symptoms to suggest you’ve miscarried). And this was when life started to feel really strange. The only way they could get more information on the situation was by monitoring my hCG levels (the pregnancy hormone) over two blood tests, taken 48 hours apart.

I had to wait 48 hours to find out whether my situation was a medical emergency. If it was ectopic, surely a tubal rupture could happen at any moment? 

I was sent home with a ‘pregnancy of unknown location’, and with far more emotions than I thought possible to hold at any one time. I was so, so sad that I’d lost this baby. I was scared that we didn’t know where it was. I was terrified of its potential to do me harm. I felt stupid for thinking I’d been carrying a healthy, developing baby. I wanted the pregnancy out of me. Then I felt guilty for wishing it out of me because I’d wanted the baby so much. 

In fact, ‘expectant management’ is a well-recognised and frequently used method of treating ectopic pregnancies – if your pregnancy hormone levels are dropping, the pregnancy will quite often end of its own accord, even when it’s not in the uterus. I struggled to wait twenty-four hours - I can't imagine how unbearable it is for those who simply wait for it to resolve itself. 

Running on no sleep, I phoned the EPU the following morning with more questions. As a nurse with English not her first language tried her best to answer my questions (I think at this point I was trying to get them to diagnose my situation based on just one blood test, which would have been completely impossible), the sister who’d discharged me the day before overheard the conversation and took over. I told her I was feeling a bit frantic, and was worried I’d read so much about these potential situations that I might be overreacting or imagining things. But that I had this very odd feeling – not even pain, just mild discomfort – in my backside. I fully expected her to laugh, but she told me to get myself straight to A&E where she’d have the gynaecology team meet me. The fluid they’d found on the scan the day before was sitting on my peritoneal wall. It was clearly growing. 

But not even then did it really become an emergency. I sat in A&E waiting for two hours.

I was examined by a gynaecologist in A&E who treated me like I’d just walked in randomly off the street, despite his knowledge of the previous twenty-four hours.

More bloods were taken, but not for my pregnancy hormone levels. The wonderful consultant who had seen me the day before asked to re-scan me. They still couldn’t see anything definitive, but there was definite pain on my left side if they started really prodding, and the fluid was still worrying her. 

She suggested a laparoscopy – they wanted to have a look at my fallopian tubes. If they found nothing there, they’d just come out again. If they found the pregnancy, they would need to remove it which would most likely mean the removal of the fallopian tube housing it. I tearfully agreed, and asked when we’d schedule this for, thinking I’d be sent a letter with an appointment. The consultant told me there was another ectopic in surgery at the moment, and that she’d like me to be the next one in. That was the closest it all came to feeling like an emergency. 

The surgery went well. It turned out to be a simple procedure as far as ectopic surgery goes; my little embryo had implanted itself in the fimbriae at the very end of the tube, so I had no fallopian tube removed and no incisions made in the tube – they simply ‘milked’ the pregnancy out, and cleared the 250ml bleed that was coming from it. 

And a day later we were home. In a bizarre few days when the entire world seemed to be mourning...David Bowie...Alan Rickman...we too stumbled around the house in our private bubble of too many emotions. I felt like we were in a parallel universe.

One of the cruellest ironies of the procedure is that the gas used to inflate your abdomen for the surgery, and the subsequent swelling, mean that you leave the hospital looking around five months pregnant. And in those immediate shell-shocked days after the surgery, when finding humour in anything feels impossible, when you do finally have a small, much-needed breakthrough of finding something very trivial funny...the dog farting, your husband’s newfound addiction to jigsaw puzzles...you’ll be in far too much pain to be able to laugh anyway.
I was happy to still be in that bubble – my husband was wonderful, instinctively knowing what I needed at every minute of the whole ordeal, and I felt completely supported. But not talking about what had now happened didn’t sit well with me. Having the pregnancy as just our thing, when it was a happy, exciting moment we were being given felt like the right thing for us. But now that it was no longer that moment, the not talking about it felt very wrong, and a little bit like a lie.

It was compounding my personal sense of failure, and I couldn’t help but feel that if these early pregnancy losses weren’t so often shrouded in silence, perhaps that sense of failure wouldn’t have felt quite so powerful. 

This feeling that I’ve failed to carry out the most basic, primitive function I was put on this earth to do is proving difficult to unstick itself, regardless of how well I logically know it to not be strictly true – or how well I’m aware of the statistics I’ve read about the hundreds of thousands of women in the UK for whom this is also no simple feat. However if those were more than just statistics...if they were human voices with their own stories and shared feelings and common ground, would we all be punishing ourselves quite as much?

I had one particular night of sleeplessness thinking of the countdown to due date my husband had set up on his phone, and his clearing of the spare room so I could start thinking about my visions for a nursery. The added weight of feeling I’d let my husband down (something he would be furious to hear because those certainly aren’t his feelings) has, at times, been simply too sad to bear. 

Within a few months we began to slowly emerge from our bubble. We both returned to work. Our close families knew our situation, and it was through telling them what had happened that I felt my strongest yet. The relief of articulating what had happened, of having someone else who knew even if they weren’t quite sure what to say next, had actually given me a little more strength. I was acutely aware of how private and personal our grief felt, but I still felt a need to connect it to something. I needed commonality. And what continued to trouble me was the knowledge that I probably know several people who have been through all of these same feelings and emotions, but have felt unable to talk because they haven’t known how to. 

Go to the full list of stories.

Disclaimer

Please note that the opinions expressed by users in Tommy’s Book of #misCOURAGE are solely those of the user, who is unlikely to have had medical training. These opinions do not represent the opinions of Tommy’s and are not advice from Tommy's. Reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis or treatment from a qualified health care provider. We strongly advise readers not to take drugs that are not prescribed by your qualified healthcare provider. If you think you may have a medical emergency, call your doctor, midwife or hospital immediately. Read full disclaimer

Comments

Your comment

Add new comment