Waiting two weeks for ERPC - feeling angry and upset

[swancourt]

I am supposed to be 9 weeks 3 days pregnant (according to LMP; 8 weeks 3 days according to when I think I ovulated and my usual cycle length). I have two children and had a MC at 5 weeks before I had them.

I had sore boobs and back ache this pregnancy, but I didn't ever have sickness or nausea (I had a LOT of sickness and nausea with my two healthy pregnancies). And then last Thursday there was blood on the tissue when I wiped. I went to the GP who booked me in for a scan on Monday, but I didn't want to wait that long so booked a private scan on Friday and it revealed a missed miscarriage. I have been lightly bleeding ever since.

On Monday I went to my NHS scan with my report and photographs from the private scan. I was rescanned and it revealed no change. But then I was told that the NHS needs two scans and won't accept private scans as evidence. I have a scan next Wednesday (so almost two weeks after the first scan) and have been told if I want an ERPC (I do) I should be able to have it the next day. The nurse said there is not even a one in a million chance that this pregnancy is viable, and she wishes she didn't have to make me wait for purely bureaucratic reasons, but there's no way around it. She even went off and asked a senior nurse if they would take my private scan evidence, but she refused.

I am fed up. I wanted to try for a third baby a year ago, but my coil was stuck and had perforated my uterus. It took six months and a complaint to PALS to get it taken out. Then three months trying to conceive, and now I'm two months in and stuck in a similar but worse situation - I want this baby out, it isn't alive and may never have been alive, and I have to wait until somebody somewhere can tick a box. In both cases the medical staff have said 'I'm so sorry it has to be this way - we're currently fighting this policy as it is so heartless to women in your situation, but there's nothing we can do'.

I am sick of being told this. I am sick of being asked to carry things around inside me that I don't want there. I don't want to wait another week for my ERPC. I am sick of going to the loo and checking for blood. I am sick of waking up wondering if today will be the day it happens naturally. I am sick of being off work and letting everybody down. I am sick of not being able to move onwards with my life.

I am posting this here because I don't want to be a massive drama queen in real life and feel like posting anonymously will at least let me get my worst thoughts off my chest.

[ArseyDarcy]

First post, so here goes

I was diagnosed with a MMC at my 12 week scan last Saturday. I have had no bleeding, and a small amount of cramping the day before. My next scan is Monday 14th, 9 days after. I was also told there is a waiting list for surgery. So I'm thinking that they would push me towards medical management.

I have no advice, but I just wanted to let you know, I understand how you feel. I get the work thing, and that you need to physically move on.

The system is crap and cruel.

[FireflyGirl]

Firstly, I'm so sorry you have to go through this, both of you.

I had a mmc 2 years ago, should have been 10 weeks, no heartbeat when scanned. I had to wait 2 weeks for medical management, because it was over the Easter period. I spent the whole time in limbo, couldn't go back to work, nothing was happening naturally. It was shitty.

If you need to talk, I'm here

[Loki17]

I was refused any help over Christmas when I found out I'd had a mmc at 11 weeks. I'm so sorry you are going through this. I mcd naturally in the end. It was forced upon me and I'm still angry with the hospital. I wrote a post on here called 'my story' and I documented everything. Might help prepare you to read it.

[ArseyDarcy]

Thank you for your kind words. MN has given me lots of advice over the year or so I have been lurking, but this topic has helped me so much over the last week. Reading people's stories have made me feel not so alone. And given me practical advice.

I have been "lucky" and a family member has pulled some strings to get me private surgery tomorrow. This week has been hard enough, but it must be even more horrendous if I knew I still wasn't going to be getting any closure on Monday at my second scan.

[swancourt]

arseydarcy I am so sorry you are going through this too. So glad you can get the surgery tomorrow - wishing you the best of luck with it.

firefly 'limbo' is exactly it. I work in London but live well out in the suburbs (actually, I live more or less in the sticks) and being at home doing the school runs and then sitting by myself trying to get some work done makes me feel like I'm living in some strange, lonely, alternate reality. People have been lovely. But I feel like I'm in this odd bubble and can't even figure out how I feel.

So sorry you had the same firefly and loki17. I wish it had been different for you, but thank you for sharing and making me feel less alone. Where is your story loki? I'll google and have a look ...

Thank you ladies xxx

[swancourt]

Found it! It's here if you want to read it too arseydarcy

www.mumsnet.com/Talk/miscarriage/2545615-My-Story

[swancourt]

loki I just read your story. I am sitting here in floods of tears. What a strong and beautiful person you must be.

Thank you for sharing. Mostly for sharing the emotion - but also the practical side of things. My baby was 2.6mm on Friday and 6mm on Monday, but I took pregnancy tests on Friday and Tuesday and the line had become much fainter by then, too. As I said, I think I should be around 8-9 weeks - the gestational and yolk sacs measured correctly for my dates, although I don't know how reliable that would be - but it seems likely to me that the baby never grew properly and never had a heartbeat. I've been bleeding for a week now, with only one clot (after the scan). I keep wondering if this is the miscarriage. But having read your post, I realise it can't be. How could I be so silly not even to realise my waters might break, or there would be a mucus plug? I've had no pain at all, either.

I don't want this to happen naturally. I just want the surgery. And I couldn't believe how similar your story was to mine in that the nurse also told you there was no hope, discounted your private scan, agreed that it was cruel, but couldn't do anything.

What the fuck is wrong with a system in which women's wishes, and the common sense of nurses, are overriden by some policy set by who-knows-who sitting in an office God-knows-where? It just makes me so cross.

I absolutely loved your idea of the 'Winter Sun'. I bought some Forget-Me-Nots today. Just in a little pot to remind me of the baby. We were already going to plant a cherry blossom tree in our front garden at Easter, but I may plant something special beneath it so that our home has a place in it for this little one. I felt silly and melodramatic buying the forget-me-nots. I kept thinking that this was never a real pregnancy, and thinking I was making too big a deal of it. But I read your story and felt so relieved to hear the voice of somebody going through the same thing and feeling so many of the same emotions. I feel like you have helped me give myself the little bit of permission I needed to feel what I feel. Thank you.

[ArseyDarcy]

Thank you Swan for the link. I did spend most of Saturday night reading threads on this board. Amazed by the strength of you all that have been through this awful process. But thank you all for sharing your experiences.

From my point of view, I feel like a fraud. For thinking I was pregnant all this time (baby measured 5-7 weeks) and for being off work all this week with no symptoms. I have never been off for this long. I'm not even that emotional. I kind of knew how the scan was going to go. I almost feel relieved. Although I am sure I will crash and burn soon (maybe when I go back to work?).

I have bought a bracelet similar to one with my daughters name on it, with a little angel on. My daughter also decided to stick a butterfly sticker on her wall the day after the scan. That's my little one looking down on her.

[ArseyDarcy]

When's your next scan Swan? This Wednesday? Can you try to get on the surgical list for then?

[Dextyboo]

I had the same thing too. Discovered my baby died at 5 weeks when i was scanned at 9weeks i was 14 weeks pregnant when it was all finally over. It was mentally and physically very traumatic. If it ever happens again i will go private for erpc as the psychological effects of the waiting game are just not worth it.

As i think youve already seen, seems to be common practice. I would never do medical management again

[swancourt]

Thanks arsey. I know what you mean - I think I am totally fine, but then I keep being tearful. But deep down I knew something wasn't right. And also, I feel an absolute fraud being off work. I could have gone in this week. I've created more problems for myself by not being there. On the other hand, I've been accidentally tearful at odd times (probably hormones?) and that's just sitting on the couch working from home. Probably was best not to go in. ARGH.

[swancourt]

Sorry - scan is next Wednesday but they assured me ERPC could take place on Thursday.

[ArseyDarcy]

After my scan, the staff nurse at the unit (think she may have been bank staff - looked very out of her depth - felt more sorry for her) said that there was a waiting list due to the doctors strike causing a back log. Hopefully your unit won't be affected.

Will be thinking of you over this week Swan, and especially Wednesday. I'll let you know how mine goes tomorrow if you would like.

I should really eat something (got to fast from midnight) and go to bed. But I know I won't sleep.

[ArseyDarcy]

Sorry to hear you are here too Dexty and you have experienced the same.

Although the consultant I am seeing tomorrow has been quick, one of the private consultants would have possibly taken longer than the NHS. So it's not always necessarily the fastest option.

[53rdAndBird]

So sorry you are dealing with this, OP. I went through the same thing a while back, and it was absolute hell having to wait and wait and wait when I so wanted the whole thing to be over. I begged the EPU staff in tears to book me in for an ERPC, but no.

The wait-then-rescan policy is, as I understand it, to catch the small number of cases where the woman really has just got her dates wrong. But I don't understand why we can't make an informed choice to go ahead with medical/surgical management if we want to, if we decide that's best for our own mental health. It seems bizarre and cruel that we have the right to terminate a viable pregnancy without weeks of waiting, but if it's not viable then we can't choose.

(I ended up miscarrying naturally before the next scan, then got pregnant again immediately after and carried a healthy baby to term. But I'm still sad and furious about going through that awful limbo.)

[53rdAndBird]

Oh, so awful to see that so many of us have been/are going though this

This system is just cruel. Miscarriage is hell enough already - why do we have to be put through more?

[Dextyboo]

I remember at the time of mine a fellow mumsnetter going private through mary stopes i think, it was all done very quickly and the follow up was excellent.

I waited two weeks for rescan another two weeks for it to happen naturally was given medical management to do at home then admitted to hospital twice finally given an emergeny erpc at 10.00pm at night after ab overnight stay. I felt so good and relieved after the erpc i would never wait again unless there was any doubt.

However i put my hospital admissions down to the medical management and there is no evidence to suggest that, just my opinion.

If you want to try again straight away a natural or medical management is probably safer as less invasive to your womb although even after the erpc i was told i only had to wait 6 weeks before ttc. I got pregnant again as soon as i could.

[swancourt]

Thanks dexty. Thinking of you today arseydarcy

53andbird congratulations on your healthy subsequent pregnancy, but I'm so sorry you went through the same. I totally agree with you - if we're told the facts and want to proceed, why aren't we trusted to make that judgment for ourselves. In my case they said there's NOT even a 'one in a million chance'. So what's the point? And I've had two scans but they can't take the private scan (I guess there must be crap or untrustworthy or unqualified private scanners out there, so it's their fault really).

I do want to try again straight away but the natural or medical management could take even longer than the ERPC so I think it's swings and roundabouts. Also, screw them I'm waiting a full cycle before ttc just so it's a bit less tricky/cheaper for the not having to give me an early scan to work out my dates. There's no medical reason to wait and I'm certainly not waiting just to help out with the admin.

Thank you so much ladies, and so sorry you are going through/have been through this too.

[Dextyboo]

swan how are you doing now? I just wanted to say if u do choose erpc get all the info about trying again. U was pregnant 6 weeks on from erpc and had an amniotic sheet which can be caused by erpc so if they recommend waiting i would look into it.

Not sure what the amniotic sheet did, if anything but my next pregnancy didnt go very well sadly.

[pandabear75]

I had a private scan at 9w last week which showed the baby stopped at 5w. I had another scan at the hospital today, nearly a week later, and have been told I have to wait another full week for a rescan before doing an op as they won't recognise the private scan. To make it worse, although both sonographers I've seen have said its def bad news, the nurse told me today we have to wait the week incase the foetus' heart starts (the sonographers said this isn't going to happen). I'm certain of my dates to the day. So after a week of knowing the foetus is not alive she has told me it might not be. What a nightmare. Also She was absolutely awful in her manner towards me and was ranting and talking over me about 'policy' and 'procedure' and didn't have a single kind or sympathetic word to say. After holding it together throughout today's visit this pretty much finished me off. My heart goes out to everyone here, xxx

[swancourt]

Thanks for asking dextyboo. I'm okay - feeling much more positive this week but that's because I have hope that this will all be over. I am still bleeding (11th day and counting) but much less than I was this time a week ago. I just did a pregnancy test as I thought perhaps I had mc'd naturally (without pain/cramping and with only one real clot - so it was always wishful thinking). But the test is very clearly positive - not as dark as you'd think it would be at 9/10 weeks pregnant, but a really really clear dark line. So clearly it's not happened properly by itself.

I went back to work today as I just couldn't keep missing it - but today and tomorrow are my heaviest days of the week and I have someone to cover the thing I have on a Wednesday morning, so then I'll be off again to the end of the week. It felt good to be back - much less like living in limbo. Somebody at work today told me if I have the ERPC to expect to be out of action for a week or so :0 I haven't planned for that at all ...

So sorry that your subsequent pregnancy didn't go well either :( I hope you are bearing up okay? I had to google amniotic sheet - had never heard of it before. I'm so sorry that you had two very difficult and sad pregnancies back to back.

panda I am so so sorry you are going through this, and I am sorry you were treated so badly. They need a new way of dealing with private scans - why isn't there a register of approved scanners somewhere? It surely shouldn't be too difficult to achieve that, and it would save so many women so much heartache. My heart goes out to you - please know you're not alone. We can get through this.

[pandabear75]

Thx my thoughts are with you all tonight. No one really understands until you go through this; but we do xxx

[ArseyDarcy]

How did it go today Swan? Been thinking of you.

[anastasiakrupnik]

I'm sorry you've all experienced such prolongued appts dragging out what is already a horrific scenario.

At my scan in Oct due to light bleeding at 11wks (baby stopped at 7-8) the consultant just went to fetch another sonographer to confirm, as a second opinion, during the scan. I now feel lucky though no idea why it should be different - different trusts interpretting rules differently? Or is my hospital helpfully lax??

I hope today went 'well' OP and you're not in limbo anymore.

[swancourt]

Thank you for asking.

I had my scan today and there isn't much left - so the bleeding I've been having (not as heavy as a period but I had 11 days of it and then it stopped this week) has pretty much been it. I only had one real clot after my scan last Monday, and no cramping. But as the bleeding has stopped and there is a little bit of a collapsed yolk sac left and some tissue in/near the cervix, they said I could have medical management. So I'm going to have that (on Monday - gah! More waiting!).

I feel loads better this week though - I think my hormones must be levelling out a bit and I felt fine at the scan (DH was there too this time, which made a big difference).

The nurse told me not to try for two months because it might stress me out if I didn't know my dates. But sod her :D Trying again asap :)