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AIBU to think that EPAU is dragging out failing pregnancy unnecessarily?

(29 Posts)
CurlyTwirlyTwos Wed 13-Jun-18 09:27:27

I’ll try and keep it simple:

Went for a private scan last week, I should have been 8 weeks. I showed a 8 week sac, no fetal pole, no heartbeat.

Confirmed by epau at local hospital 3 days later.

As the private scan could not be taken into account I had to return to epau today, exactly 1 week later to reconfirm suspected blighted ovum. Today showed a fetal pole and a ‘slow’ heartbeat. The sonographer said I measured approx 5-6 weeks, and that my uterus is measuring 8+3

Nothing adds up.

I now have to return in 10 days to see if the pregnancy develops further.

The epau ladies didn’t seem positive about the outcome of my pregnancy - so why make me wait another 10 days? I want this to be over, I was all set for a d&c this week, and to put this behind me.

I’ve had a positive test over a month ago now, I realistically know that this is a very slow miscarriage. I have no hope it will turn out well. I don’t feel like I’m going to start bleeding anytime soon, in fact I’m still very nauseous and tired to the bone - the 1st trimester symptoms are not decreasing at all.

AIBU to book into BPAS and resolve this myself? I’m giving it serious consideration now, in my mind EPAU are dragging this out unnecessarily. My worst fear is that will be 'some' development again next time but resolve what is it is clearly a failing pregnancy.

I feel like it's going to take them 3-4 weeks to take any action - I should be in my 2nd trimester by the time anything is done for me. I'm getting very upset and angry.

AIBU?

BarbarianMum Wed 13-Jun-18 09:33:48

Im not surprised that you are upset and angry, those seem very normal emotions in the circumstances. If you want to end the pregnancy now, that is your choice. I dont know enough about the early stages of pregnancy to comment on whether this is something you should be being actively offered. Have you spoken to a doctor about your results?

flowers

Musicaltheatremum Wed 13-Jun-18 09:40:13

If there is still a heart beat then sadly you have to wait as there is still life there so you can't end it. I didn't realize this til it happened to one of my staff and I'm a GP. it will be to do with the embryology act (whatever it is called)
It's really hard for you and my sympathies are with you Hope it gets sorted soon

user1471532894 Wed 13-Jun-18 09:43:26

I’ve had a fairy similar experience. EPAU scan at 7 weeks due to previous miscarriages. No heartbeat seen and measuring at 4 weeks. Told to return the following week, still no heartbeat but now measuring at 5 weeks. The following week’s scan showed a heartbeat and the measurements indicated at 5+4 week pregnancy. By their reckoning, I hadn’t gotten pregnant until after a positive pregnancy test. Fortunately, the pregnancy was successful and I now have an almost 3 year old.

It’s so frustrating and emotional when you’re stuck in the wait but I just wanted to let you know that it doesn’t always end in the worst way.

QueenAravisOfArchenland Wed 13-Jun-18 09:44:17

I am so so sorry for what you're going through, but please don't blame the medical staff. They are doing what they can for you, and they have to be absolutely, without-a-doubt sure that the pregnancy is both unviable and over, for obvious reasons. I don't know if law is also a factor, but obviously nobody wants to risk ending a viable pregnancy when scanning at early gestation and estimated LMP dates can both be very difficult to rely on.

Please do what you need to do psychologically, it's a rotten time.

TestingTestingWonTooFree Wed 13-Jun-18 09:45:49

Sorry you’re going through this. I don’t know enough to know whether there’s a slim hope. I suppose booking an appointment might give you some choices/second opinion. flowers

ZibbidooZibbidooZibbidoo Wed 13-Jun-18 09:49:14

I’m so sorry youre going through this OP. Off you feel you need to end it then of course you should. You don’t have to wait weeks to be told.

If there is still a heart beat then sadly you have to wait as there is still life there so you can't end it.

Surely that’s exactly what a termination is for? Of course she can end it.

peachgreen Wed 13-Jun-18 09:49:16

Same thing happened to me, I just had to wait for the heart to stop beating. Had weekly scans from 6 weeks to 12 weeks and it eventually stopped at 12 weeks - I had a D&C two weeks later.

It was awful but I'm glad I waited for it to end naturally as sometimes these situations DO work out and I would always have been wondering "what if". Plus in hindsight that time with my baby was very special and comforts me now, even though it was agony at the time.

I'm so sorry you're going through this, it's an awful thing.

FutureFairyCrayon Wed 13-Jun-18 09:51:47

I'm sorry that you're in this position, I've been in it twice myself. Unfortunately they can't/won't do anything until the heartbeat stops, no matter how obvious it seems to you that your pregnancy isn't going to have a happy outcome.

I suppose they have to be careful as a lot of women are unsure of their dates (which is no comfort when you are 100% sure of yours), and you do hear about people having scans where things look bad and then a week later the measurements have caught up and everything is fine.

Being in limbo is so, so, tough, just take it one day at a time and be kind to yourself. flowers

NotAnotherUserName5 Wed 13-Jun-18 09:55:17

I'm so sorry you are going through this.
They did the same with my missed miscarriage.
It was hospital policy, as they were previously in trouble for misdiagnosing a miscarriage, so they make you have two scans a week apart.
It was horrible as baby was 13 weeks and the staffs hands were tied, despite it being 100%.

flowers

KoshaMangsho Wed 13-Jun-18 09:55:51

Yes. So then she can have a termination. But the EPAU operate under strict rules to ensure that they don’t end a viable wanted pregnancy where the dates may be out.
I have been in a similar position and have had to wait and it’s horrid but the rules are there to prevent that horrible case of someone doing a D&C on a pregnancy that might have been viable.

ZibbidooZibbidooZibbidoo Wed 13-Jun-18 09:57:47

Oh I misunderstood. I thought musical was saying she couldn’t have a termination at all. I didn’t realise she meant the D&C at the epau.

Missingstreetlife Wed 13-Jun-18 09:59:10

Hope they have checked for ectopic as well

TinyTear Wed 13-Jun-18 10:01:04

Yes the limbo stage is hell. I had that with MC1 and MC2 for me...
It's up to you if you want to go privately or wait. I waited for the physical surgery but in my mind had checked out on the second scan...

mindutopia Wed 13-Jun-18 10:34:09

So sorry you’re going through this. The waiting is awful. Unfortunately, the NHS protocol is two confirmed scans with no heartbeat or signs of development, each a week apart. I had three scans over about 2.5 weeks to confirm my mc (never was a heartbeat, so bit more cut and dry). It would be horrible to end a healthy and wanted pregnancy, so they have to be sure, but doesn’t make the waiting easy. I waited nearly a month from first scan because I couldn’t decide what I wanted to do and it was hard. Staying busy and planning a few future things we wanted to do helped keep me sane and optimistic.

Melamin Wed 13-Jun-18 10:48:24

I was in a similar position to you about 28 years ago. I went back and forth the the GP with brown bleedy discharge from seven weeks. At 11 weeks I briefly had some pain and red blood and saw a locum who had just come from working in the gynae wards, and he sent me into hospital that evening. The consultant came round and said the pregnancy was a dead loss and I was booked in for a D&C the next lunch time. The reason I had to wait was because the woman who came with me with the same symptoms had a different consultant who sent her for a scan first. Then she ate some crisps after her scan, so we had to wait until 7pm hmm.

When I came round from the op, the registrar told me that they had not found anything. I was so relieved because I could not get it out of my mind that they might have killed my baby, even though I was sure it was all over before I went into hospital (and I was sure, it was not just worry).

Next morning, the other woman went home, and the sister sat with me and told me that the registrar had thought that I had not taken in properly what he had said when I was coming out of the anaesthetic and that I was to go for a scan and have a blood test to make sure I was not still pregnant and that it was not ectopic (although this was unlikely since I was past 6 weeks). I did say I was really unhappy about the way things had been done, and that if I had had the scan first, like the other lady, they would have known what to expect at the D&C and I would be going home like the other woman.

I had the scan, the blood test came back positive, but the younger doctor told the consultant that it was at a level that would be expected. The sister sat with me during the results. I thanked all the nurses for being kind and helpful (I even got a hospital 'visitor' who listened to my woes very kindly) and told them I was glad to be going home.

Later, I saw the other woman who worked near me who urged me to make an official complaint - I went the CAB who went through the cumbersome procedure with me and decided that I had done the right thing at the time, and that it would be too difficult to take it further. I told my doctor I never wanted to see that consultant again, and I didn't.

I thought the EPAUs were supposed to put an end to this sort of thing, but they seem to have developed new ways of stringing things out - I can't believe women have to go through so much waiting once they have found out there is no longer a heartbeat. sad

jamoncrumpets Wed 13-Jun-18 10:50:02

I think EPAUs across the U.K. are vastly underfunded. But I also think there's a culture of 'until the pregnancy is viable, just get on with it yourself'.

It's much cheaper to let an early pregnancy fail naturally than to monitor it failing and intervene medically, and because this comes at a relatively low (physical) risk to the mother they are prepared to let it happen, despite the mental ramifications. They can't prevent failing pregnancies, I get that, but they could handle them more sensitively.

I had a miscarriage at 11 weeks last year, and remember contracting and being in agony while a stoneyfaced doctor tried to dissuade me from surgical management. Nobody would tell me what was still left to pass. Nobody told me that the foetus was still in there. I was fobbed off with 'you've probably already passed the worse' and I was so weakened from basically being in labour for 12 hours that I agreed to take the tablets instead and then had to deal with losing my baby in the toilet at home later that week - but to EPAU that's the best solution, because I wasn't taking up a bed and I never darkened their doors again.

Until... I had a huge bleed at 12 weeks with my most recent pregnancy. This time there was a live foetus and a heartbeat. Again, I was sent home with a shrug and a 'if IT happens it happens' attitude. I bled for 9 weeks. I'm 39 weeks now and baby is due any day.

peartreeishappy Wed 13-Jun-18 10:57:59

I wonder if they do it to save money on erpcs.

Melamin Wed 13-Jun-18 10:58:01

It does seem to be a totally heartless system.

When I went into hospital, it was pretty standard that you had a D&C to prevent infection from an incomplete miscarriage, and to prevent haemorrhage. I understand that unnecessary D&C is a risk, but they don't seem bothered about other risks any more confused

jamoncrumpets Wed 13-Jun-18 10:59:01

It's absolutely to save money. Which I do understand.

Drchinnery Wed 13-Jun-18 11:21:49

I sympathise with you. But I think in that situation they will always act as if it's the worst outcome to not get people's hopes up. I had a massive bleed at 11 weeks, passing clots, literally blood was pouring, but they checked and my cervix was closed and I had no pain. They told me that it was likely I was having a miscarriage but couldn't fit me in for a scan so to go home and wait til the next day. When I went back they did a scan and he was absolutely fine, I bled on and off through my pregnancy and he's now 6 weeks. I felt the same as you and was furious that they had made me think that and I'd had to spend the while night devastated for no reason, but I did in the end realise why, if they'd told me there was hope then it turned out there wasn't that would have been worse

CurlyTwirlyTwos Wed 13-Jun-18 16:00:55

Thank you MNers for taking time out to reply and comment on my post today. I feel a bit better reading your replies, and I might have gained a little perspective.

I feel so powerless about this. I've moved from anger to depression in the space of an afternoon. My emotions are all over the place.

Why do the NHS not provide clear, transparent, unbiased information which isn't clouded by policy or funding issues? I absolutely agree with you @jamoncrumpets - I feel that it is a funding issue, why can they not admit to that? It would better explain the reasoning behind decisions. I would pay privately to resolve this, but feel I shouldn't as all the information hasn't been given to me. I could get scanned again by EPAU in 5-7 days - why make me wait 10 days?

Instead it's a 'wait and see, you might start bleeding you might not - but don't get your hopes up because it is very unlikely it'll work by the look of your scan, it's clearly developing abnormally but we need to be sure'.

WTF am I supposed to interpret from that?

Oh my goodness @peachgreen your story brought on the tears. This is the exact situation I am want to avoid for myself. I do not think I have your strength. I cannot imagine returning for 6 consecutive weeks, then another 2 weeks wait for the d&c. You have been so brave, I don't think it's in me. The way you've phrased it brought great comfort, and perhaps reframed the situation for me a bit, I'll try to think of it from your perspective. Thank you for sharing for experience and how you managed - it means a lot when someone shares a similar experience.

@user1471532894 - congratulations on your successful pregnancy and birth on your baby 3 years ago! Out of interest - did your dates ever 'catch up' or was your EDD 3 weeks behind for the entire pregnancy? I don't think I will have the same outcome as you in 10 days time, but it's stories like these which justify the 'wait and see' approach. You do remember whether your baby's heartbeat was normal when they (eventually) found it?

In my situation - the dates and rates of development, a positive outcome just seems improbable. 9 days and counting........

Anyway - thank to everyone again for listening to me rant and rave. It's been cathartic to listen to your rants and stories too.

It's just such a rubbish situation, especially after ttcing for 6 months.

PivotPivotPIVOTTT Wed 13-Jun-18 16:19:51

Sorry this has happened to you. Unfortunately it's just NHS protocol. I went for my 12 week scan at 13+4 and the embryo was only visible internal and measuring 4/5 weeks although the sac was the correct gestation. I had to wait until the following week for a rescan. They told me legally they can not confirm a miscarriage as I could have my dates wrong or the off chance I could have previously miscarried, my body reabsorbed the pregnancy and this was new pregnancyhmm. Of course I knew none of these scenarios were possible and I could tell the staff though the same. After my rescan I had to wait a further week for an ERPC when I would have been 15+6 from my last period although my body decided the night before my appoinment to start letting go of the pregnancy. It was probably the lowest moment of my life I'm so sorry you're going through this sad.

sacrecoeur0712 Wed 13-Jun-18 16:20:03

I'm so sorry you're going through this and I empathise hugely. During my first miscarriage at 11 weeks I was told the same as you - go away and come back in 2 weeks for another scan (although in my case there was no heartbeat). The wait was absolute agony and after a week my DH rang them and persuaded them to scan me again the next day and arrange an ERPC. I went in for a pre-op assessment the next morning, then miscarried at home that evening and over the next few days. You could ring and plead with them to see you sooner - it might work.
Good luck, and I hope you're just measuring behind.

KoshaMangsho Wed 13-Jun-18 19:55:07

I think there is an official guideline. The sac has to measure X no of millimetres or whatever without a fetal pole or heartbeat for it to be classed as a miscarriage. They don’t tell people. I know because my sac kept growing for a bit and they wanted to make sure again, that my dates weren’t wrong. And in my grief stricken fog I do remember reading some RCOG guidelines on this! (DH is a medic...but was too shell shocked to process anything).

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