Pregnancy after miscarriage and ectopic – convinced something is wrong again!

[NSC1980]

I was cautiously overjoyed on Friday to get a BFP at 14 DPO after a miscarriage in February and ectopic in April (making me 4w 5d today).

I'm quite into tracking my heart rate and it has been slowly rising (at normal, reassuring levels) since ovulation. However, today, it's done a massive jump and shot up from 69 yesterday to 80/55 when I'm sitting down, completely still (pre-pregnancy it was around 60). If I walk to the toilet or kitchen it shoots up to around 110. This has got me worried as this was one of my symptoms for the ectopic (although it was even higher then). I did a Clearblue test this morning which came back as 2-3 weeks (it was 1-2 in the first test on Friday).

When I had the miscarriage it did the reverse and there was a massive drop the day before.

After the ectopic EPU told me to ring them the day I got a positive test, which I did on Friday only to be told to call back in two weeks to book a scan (not terribly reassuring when I had emergency surgery under six weeks last time).

I just can't bear to go through another ectopic. I know I should probably call EPU again but I had such a terrible experience there last time (no one would believe me that it was ectopic... until they finally scanned me and I was rushed down to emergency surgery an hour later). Any advice gratefully received.

I’ve been where you are OP, a pregnancy after loss and an ectopic, and the anxiety was excruciating.

Hopefully, it’s just that: anxiety. It was in my case. Even though a six week scan showed everything in the right place, I’d have an irrational panic at every twinge before my rational brain could kick in.

But in many ways it was a sensible reaction, my mind trying to protect me from ending up in such an upsetting and scary position again.

It sounds from what you have posted that things are progressing fairly normally. It’s hard to know with Clearblue etc as they’re not hugely accurate.

But, do go back to EPU if you have concerns, advocate for the care you need, and it might be worth also flagging your anxiety. I found my care changed dramatically when I confessed how anxious I was about the pregnancy. Maternal mental health is a priority for prenatal teams and it may help ensure you get the support you need.

Wishing you all the best x

I think you should talk to the EPAU again, and perhaps ask to speak to a consultant.

The reason they suggest booking in for two weeks time is because by 6 weeks they can see a heartbeat and so chances of miscarriage reduce. But after my ectopics the consultant agreed to scan me at 4+2, on the basis that they would be able to confirm location which was of course my main concern. They then offered another scan at 8 weeks to check all was well.

I'm not suggesting you ring the EPAU because I think there is anything wrong- heart rate monitoring isn't something I've encountered before and I've no idea if it has any value. But I know from my own experiences (16 years ago!) that they can scan and confirm location far before 6 weeks, and frankly the doctors generally prefer not to be wheeling a really unwell patient into theatre for an open procedure when there are much less dramatic ways to help you if it is another ectopic.

Good luck, I hope all is well. If it helps, I had an ectopic, a miscarriage (who knows where that was located since it was very early) and then another ectopic before I had my last child, and it did all work out in the end.

@SagittariusUprising and @Okayornot – thank you so much for commenting and your reassurance. It's so helpful to hear from other who have been in my position (although very sorry to hear that's the case as it's the club no one wants to be a part of... and definitely not more than once).

I worked myself into a blind panic on Thursday – I was getting all this weird shoulder pain which felt like nerve pain and that combined with a high heart rate I managed to convince myself it was another ectopic. I rang EPU yesterday and they told me to come straight in for bloods and a scan.

The HCG blood tests were 2,300 (which actually reassured me somewhat as although not at the higher end for five weeks, with the ectopic they were 600 at that stage, so it's certainly an improvement). They also did an internal examination and didn't suspect anything to be wrong. They did a very thorough check during the scan and no ectopic could be seen (my relief was off the scale), although they also couldn't see the yolk sac (which I know is often the case at 5 weeks but a bit deflating nonetheless). I'm back in tomorrow for another HCG blood test to see if the levels have doubled in 48 hours and we'll go from there.

I actually feel a lot calmer/more rational about it all now that I know that even if it's not a viable pregnancy, it's not an ectopic and I'm not going to be rushed into emergency surgery. My heart rate has gone down to normal(ish) pregnancy levels (whether I had a slight bug or it was just the anxiety making it rocket, I'm unsure but relieved to see it more normal).

I think it's almost like a kind of post-traumatic stress disorder in that I thought I'd completely dealt with my grief over the ectopic but when you find out you're pregnant it takes you right back to that time. I even had fairly graphic nightmares about it on Wednesday/Thursday. Now all I can do is keep my fingers crossed that the HCG has done what it needs to tomorrow.

Thanks again for your comments. Talking about it on here really does help x

Just thought I'd update this...

The HCG tests doubled in 48 hours at the 5 week mark which was a huge relief but while the 6-week one showed a week's worth of progress it was still to early to see more than the yolk sac (they picked up some bleeding and prescribed me progesterone). Sadly, the 7-week scan showed that while it was again a week's worth of progress in terms of size (and the bleeding had stopped), there was no sign of foetal pole and heartbeat. I'm certain of my dates and the maximum number of days out I could be is 2 (making Friday's scan 6+5). Obviously I know this spells very bad news in terms of it being a viable pregnancy but the sonographer and nurse said they can't yet 'call it' and I need to return in another week for a further scan.

All three scans have been a bit tricky in terms of my having a retroverted uterus (which I know is fairly common but mine seemed to be causing them a lot of issues during scanning). The first two scans – despite spending quite some time looking – they couldn't see anything on the ultrasound scans and the transvaginal scans took a while to pick things up too. The third scan she just went straight to transvaginal because she said there wasn't really any point in doing the the ultrasound at this stage.

I thought the week's wait for Friday's scan was the longest week in the world but this week is going to be even longer. Anyone else been in this situation and got words of advice?

I'm really sorry @NSC1980
Yes, I've been in your situation. Unfortunately it was another loss.

I know that the wait for your next scan is going to be torture. It's just possible that you'll get good news at it. I hope so, anyway.

Thanks @TheShellBeach. I know there's next to no chance it's viable but the wait just means it keeps whirring round in my head and I have moments of clutching at straws. I'd really rather it just resolved itself in the next few days but I feel like that's not going to happen so I've already decided how I want to 'manage' it come Friday. A bit despondent as I turned 42 this weekend so it felt like the last chance. But I'm clutching to the positives... It's not an ectopic this time and I've managed to conceive three times in the last seven months so maybe, just maybe, it'll all work out next time.

Just updating this in case anyone is in a similar situation. I had another scan yesterday (8 weeks) and this time there was a small foetal pole (measuring 3mm). The sonographer didn't seem too concerned about me being two weeks behind (even though I'm certain of my dates) and said that it's good that there's been growth and to keep positive. I've got a two-week wait until my next scan now to give it a chance to grow (or not). I can't believe it's yet more limbo and feel so deflated as thought yesterday I would know for definite and could take steps to move forward.

I've driven myself mad on google/trawling through previous posts on here and just can't see a positive outcome for this. It feels like such a horrible place to be.

I can well imagine you've driven yourself mad, trying to work out what's happening here.

I'm really sorry you've got yet another fortnight to go through before you get an answer.

I'll be thinking of you.

Keeping fingers crossed 🤞 for you OP x

Oh that's so tough, can't believe another two weeks. I know how difficult each day of waiting is, I can't imagine a fortnight. You're in my thoughts. I wish for a little miracle for you.

The waiting is so hard. Look after yourself and try to take it easy (although I know that’s easier said than done). I’ll have my fingers crossed for you

How are you getting on @NSC1980 ? Whether the news was good, bad or yet more limbo, here to listen

Hi @RamaSita. Thanks for checking in. Sadly it was another miscarriage – I had fully accepted this prior to the final scan, which I managed to move forwards by two days to last Wednesday... I'd already decided on surgical management so had that first thing on Thursday morning. It was such a relief to have it all confirmed and to be out of limbo as I was almost 10 weeks at the time of surgery... I'm trying to keep positive (I'm so glad it wasn't another ectopic) but three losses in 9 months feels like a lot.

We were trying for 18 months before the first loss so I'm now unsure whether to just try again straight away (after the ectopic we had to wait three months but don't have that restriction this time) or to give my body and mind some more time to heal. I'm leaning towards trying again straight away as my age is against me but I know I'll be in even more of a panic if I do fall pregnant again as the first miscarriage was closely followed by the ectopic so I'll be worried that will be the same pattern again. Either way, I'm pretty sure I can only go through all this one more time...

Thanks for listening (reading!) x

Oh darling @NSC1980 I'm so sorry to read your update. I know you were expecting it, but it's horrible to have to go through it again.

I always tried again as soon as I'd had a miscarriage. Some of mine stuck so you may be okay next time. I ended up with four children eventually, but there were thirteen years between the eldest and the youngest. And a lot of losses in between.

Hoping you have a successful pregnancy next time.

@NSC1980 what a lot you have been through. I'm sorry. I hope you're getting all the support you need.

Would it help to call the miscarriage association to talk through your worries about trying again? It's complicated and I'm no doctor but it seems to me that any pattern you think might arise is probably just your brain trying to make sense of something totally unpredictable. Having had all the grief and trauma of three losses, are you now eligible for further help or tests or advice from the NHS?

Thank you for your kind words @TheShellBeach . I'm sorry you went through so many losses too.

Thank you @RamaSita . I'm doing ok – getting lots of support from my partner (didn't actually tell anyone else this time around) and trying to keep positive.

Yes, that's a good idea re calling the miscarriage association – I might try that. And yes, it's just my brain going into overdrive... I think it's because when you have an ectopic they tell you you're then much more likely to have another one (plus I went on the ectopic preg trust forum at the start of this pregnancy and there seemed to be so many people who'd had two/three of them). I know I need to try and get a positive mindset on this so it certainly might help if I do talk to someone.

Unfortunately, not eligible for further tests/help from NHS as they don't count the ectopic in the same way as they do a miscarriage. I have booked a GP appointment for next week though so going to ask for full blood tests and see if there's anything else at all I can do/get checked at this stage. Tempted to book a private scan too to check there's no damage left from the miscarriage before I try again.

Thank you for your support.

@NSC1980 it sounds like you're doing everything right and looking after yourself well.

I didn't know that about the ectopic pregnancies not being counted in the same way for the 3 miscarriages threshold - seems frankly cruel. If anything I'd expect you to get more support! How bizarre and obviously completely unhelpful. If you have the resources to get more info privately and think it'd give you peace of mind, or even just a sense of taking control, then I would say go for it. But it sounds like you have a good sounding board in your partner and you'll find a path through together.

@NSC1980 It’s so frustrating they aren’t included. Apparently it’s because there are usually different underlying reasons, so it can just be really bad luck. I was in the same boat 5 years ago, and being told that knocked me for six. We decided to go private for tests, but had already had two miscarriages (before the threshold was lowered to two). The doctors can order many of the tests so it may be worth speaking to your GP. Ours was really kind and ordered what she could for us. Wishing you all the best.

@RamaSita and @SagittariusUprising, yes, it's really frustrating that they don't count ectopic pregnancies. The GP I've booked to speak to on Thursday is the most senior in the surgery and she was really helpful in referring me to an NGS fertility clinic at the start of this year so I'm hopeful that she'll be able to advise on what tests I can get via the NHS now/if there are any further tests that can be done at this stage. Surprisingly, the fertility clinic have also sent me a telephone appointment for this Thursday so will also see if there's anything they can do (earlier this year they did the usual fertility tests for us and everything came back normal). Once I've exhausted the NHS options I'll look into seeing what private tests we can afford. I want to be as proactive as I can at this stage because we no longer seem to have a problem falling pregnant but if it happens again I just want to make sure I've done/am doing everything I can to ensure it all works out next time.

Thank you for your advice and hopefully one day I'll be sharing more positive news on here x