Recurrent miscarriage testing and beyond.. Part 6.. Over here!

[orangebowl]

We have filled up the last thread so here is the next.. Deep breath and grit your teeth for the roller coaster of emotions that continues... Hope tea and butterfly and all find it!

Our healthcare doesn't cover anything pregnancy related. We've already spent £600 on testing, can't really justify throwing good money after bad just to shorten the wait. The woman I spoke to at the gynae ward was really nice but insistent they can't vary from their protocol. I'm just concerned that I only have enough progesterone to last until next scan, that they'll confirm the MMC and make me wait again, and I'll MC in the meantime and lose the opportunity to have tissue tested. Presumably all this time I am waiting the embryo is degenerating anyway and less and less chance they'll get anything useful?
I'm so irrationally angry with everyone! I know she is just doing her job and I won't get any special treatment for being a frequent flyer but I really resent being treated like some stupid teen who has no idea about dates. I saw the follicle ready to ovulate on a scan, I really could only be more sure about dates if I'd had IVF! She's obviously been on some communication course recently "I can hear that you are really fed up" no, fed up doesn't really even begin to cover it!

It's a real bug bear of mine when you don't get listened to. We probably know more about recurrent mc then most of them in the epu and we definitely know more about our bodies. I agree we often get treated like children. With my 1st mc they were obsessed with my LMP even though my cycles were really long and I knew when I'd ovulated. Every time I saw someone I had to repeat the situation, usually through tears

My consultant now is quite good at listening to me although he's literally the busiest person in the world so seeing him privately is much easier. My healthcare also doesn't cover pregnancy related things but for some reason it did cover the effects of mc, as did my healthcare with the 1st mc (different provider) but I didn't realise at the time. Maybe double check the policy.

I think making women wait in this situation is barbaric. Although I guess they don't want to get it wrong. Can you ring the consultant and raise your concerns about needing an erpc to get tested? My mc last year that was successfully tested was picked up about 3 weeks after the fetus stopped growing & I waited 5 days and they still found triploidy. So don't worry too much about that. I'd definitely keep up with the progesterone and get a private prescription for a week if you find it hard to get more. As you can tell I'm always paying for stuff privately as the NHS drives me nuts!

I really hope you're doing ok Baking xx

Good idea, I'm going to speak to consultant again about whether an ERPC is likely to yield useful info if I can't get it until Thursday at the earliest. If it's not I'll stop the progesterone as soon as I get back from London and probably MC at home rather than face the whole EPU rubbish again.

Baking - the ERPC I underwent last year at what should have been 9 weeks did salvage some 'material' (horrid, horrid word), but when the genetics report came back it said they hadn't been able to do a proper analysis on it. I miscarried at the beginning of last week the night before a planned ERPC and was able to save the baby and take him/her in to be analysed. I haven't had the results back from that yet, but just to say that mc at home doesn't necessarily mean that you won't be able to have analysis, nor does ERPC mean that you will.

I really wish we weren't having to talk about this

I haven't ever really been able to identify the baby/ sac. Each time has involved v heavy bleeding and massive clots so assume it was in amongst it all. First MC was later and sac got stuck and had to have it removed to stop haemorrhage but of course first time they won't test anyway.
Sorry to ask grim questions, don't want to upset anyone.

Baking, I was for your sake, not mine xx

I know there is probably no such thing as TMI on this thread - just didn't want to drag up unpleasant memories for anyone.
How are you doing, Picardy?

Not great tonight. Had wine while cooking earlier, and a YouTube and sing-fest, which helped.

Attempted to sort out baby clothes earlier today, which is easily a contender for worst idea of the millennium

And you?

Had quite a nice day - the sunshine helps. Been out cycling with the family and had lunch out. It's the night-time I'm struggling - I can't sleep and my thoughts are mad.

Baking glad you had a nice day yesterday. Night times are always hard and I don't really have any good advice as I'm terrible at sleeping at the best of times!!

I am completely freaking out today. Had some yellowish discharge yesterday which I hoped was something to do with thrush but obviously I started thinking the worst. Today when I wiped there was pinky discharge although not very much and I'm madly knicker checking now to reasses. I just feel absolutely sick and devastated already and obviously I realise that it might still work out ok. I just can't imagine it being ok and I can't hold it together. Im supposed to be going out with my parents today (not told them about this pregnancy yet as wanted to wait until the early scan) but all I want to do is stay in bed and cry. I just don't know how to get through this time. I know that I can't change the outcome and I'm doing all I can and that I am just going to have to wait and see how it pans out. But I'm feeling a bit beside myself and don't know how to hold it together??! Sorry for this self centred ramble...

Oh tea sorry you are feeling stressed today :( it could be that the pessaries have irritated you and that's causing the pinky tinge but I also know it doesn't matter how much anyone tries to reassure you, you will always think the worst I know the feeling so well, it's almost like you are going to have a panic attack the stress and worry is just so overwhelming. Do try not to worry too much though as there's every possibility it's nothing, I have to try and say to myself this could be the time it all goes right so don't ruin all these weeks worrying when you could end up looking back wishing you had tried to enjoy it more (impossible I know ) it's so hard. Like you say you are doing everything you possibly can you can't do anymore than that. When is your scan? I'm here for ranting and hand holding anytime xx

Thanks Butterfly I really appreciate it and its good to hear from people who understand.

I don't have a date for a scan yet, I need to chase them next week but as I'm only 5 weeks I don't think they'd do it for another week or two anyway.

Still having yellow/brown spotting and convinced its the beginning of the end. Just so gutted especially as it took longer to get pregnant this time. I'm making DH discuss where we go next as I feel I really need a plan. I just feel so sad. I know its not definitely the end but I'd be stupid to think otherwise considering my history. Fed up with it all really.

sorry you are stressed, tea. I hope it's just normal early pregnancy niggles but understand how hard it is not to get anxious. In a funny way it's almost a relief to actually know it's all over for me. I know I have awfulness to get through next week but I've been there, done that before. Having no hope is relatively relaxing after weeks of awful anxiety.
I saw my sister and her children today, ended up not telling her because she brought her BIL and SIL who I don't know well along. My boys were so lovely with their younger cousins, and their uncle kept asking them "wouldn't you like a little sister?" Ouch.

Oh Baking, so hard I'm glad yesterday was good and so sorry for you being on the receiving end of 'those sorts of comments'.

tea - keeping everything crossed that it's not as you fear. These early weeks are so so hard for us whichever way things go, I think.

Tea- my consultant scans me from 5 1/2 weeks so they can do it I know it can be inconclusive though but I think I would rather be scanned anyway if I had the option.
At 5 weeks the spotting could be the embryo burrowing in fingers crossed that's all it is x

Tea as butterfly said quite a few have spotting at 5 weeks. I have in the past (sadly MCed later but for unrelated reasons) as have most of the women in my family who all carried to term.

Baking ugh, what an awful wait. I agree that an ERPC could yeald valuable information. Similarly to you my sac has always broken up before I had my ERPC (which reminds me I must call my GP to see if the results of the pathology are back). It is very interesting how Dr understanding and testing varies from place to place and even within the same hospital. I've had one Dr panicking and telling me I 'have' xyz then another being totally calm about it. Luckily my local hospital has a sensible waiting policy, but it just varies so much. :( Poor you.

Thanks everyone for the support I really appreciate it. I'm a wreck at the moment. Can't believe I only managed to hold it together for a week! Still a very small amount of brown spotting but cramping quite a bit. I know I had cramps with all my pregnancies but can't remember how bad/frequent they were. I'm completely expecting the worst & can't stop crying which is so hard as I need to carry on and see people.

Butterfly I will chase up the scan tomorrow but I'm hesitant to have it too early in case its inconclusive which just adds to the stress - I don't want to have the conversation about whether dates are right.

I just don't know how to process this. Should I accept its gone and then if its ok it'll be a happy surprise or should I keep hoping??

Baking people say the most annoying inappropriate things. I really think that unless someone has been through infertility and mc they have no idea how bloody hard it can be to have a baby and what a sensitive subject it is. I'm finding it harder and harder to deal with the questions and am honestly considering telling people that we can't have anymore children (which is probably true) as I'm sick of all the expectations and questions!!

I'm so sorry for these self indulgent miserable posts. I just wanted to keep in touch but can't think of anything happy to say!!

Oh, tea. Not self-indulgent at all, one little bit. It is so, so hard - including and perhaps especially all the psychological torture of these initial stages, the struggling how to deal with it, the fear of letting your real feelings through as they might rightly overwhelm you. And then the need to keep going in front of others as nobody can see what is playing itself out in you, either bodily or emotionally. It's horrible.

I really think you can't do anything except be as kind to yourself as you possibly can. Trying consciously to nurture myself - which does not come naturally or easily to me at all, for various reasons - was what got me through the last few weeks in the relatively OK shape I am in now.
How is your dh being? Mine was completely rubbish last time - he sees the mc very differently from me, as well he might seeing as they are not happening to his body - and it seriously affected my perception of him for a while and we did a lot of serious talking. This time he's been (mostly) marvellous and really looked after me.

And when it comes to other people, you say whatever the hell you like. If people are going to ask such questions - thoughtless at best, intrusive at worst - they need to be able to deal with straight/awkward/not-designed-to-make-them-feel-comfortable-at-your-expense answers.

Holding your hand, and hoping for you if you can't face it. x

Oh Tea I'm sorry you are feeling so horrible.. It's just he worst time . Don't know if it helps but I found that the beginning uncertain time was even worse than finding out we had no heartbeat in a way as its just so uncertain.
I think if you can get a scan at six weeks then its worth it (maybe bit after?) as think a heartbeat should be visible by then. Or at least some kind of measurement...

And what to tell people.. After a couple of miscarriages I actually started to say "were having some problems with miscarriages.. " which tended to shut people up pretty fast
Take it as easy as you can today. X

Yeah I just tell everyone. I was amazed at how many of the blase people had been though it themselves! I wonder if once they came out the other side and so forget how scary the middle of the whole hellish business is. Sadly I've also met some people much worse off than me too - they seem tough cookies and no wonder, never telling anyone and in so much pain. Yeah, and some people are just nobbish e.g. "How odd, I have diabetes, had a general anaesthetic, worked with weedkiller and my baby was fine! I must have a super womb- what a shame yours isn't" was my worst comment. So bad it's funny! Who says that to a repeat miscarrier?!?

And like School says, the uncertain times are often more awful than the sad times. Sad is sad... limbo is terrifying. I do hope this time it's just a scare!!!

Thank you everyone. You are all so sweet and it does make me feel so much better being able to speak to you about this. Noone else understands. Even my closest friends say the wrong things and I can't talk to my mum as I don't want her to start panicking and worrying.

DH is being ok at the moment. He is at least talking about it but obviously is being led by me so when I said I thought it was over he seems to have accepted that and isn't on the same rollercoaster as me. We've discussed next steps as I'm obsessed that I need a plan if this goes wrong. But he has no real opinions as I'm the only one who reads and researches about mc. He just won't do it. Either doesn't want to or doesn't understand but his approach to medical issues is totally opposite to mine. I completely overeducate myself and read as much as I can. He sticks his head in the sand and will only really discuss it with whichever doctor we are seeing and takes their advice without question. I realise its complicated and he doesn't really understand science but it frustrates me no end!! I feel like I'm making all the decisions on my own. Although to be fair I have a friend who's an obs&gynae doctor and even she doesn't fully understand rmc and the various treatments.

Picardy I know I should be kind to myself but fear I'm not being. I am taking it easy as far as I can and yesterday slept for 2 hours in the afternoon as was so tired. But I'm finding sleeping at night really difficult and don't want to eat anything except toast and chocolate!! I think its nerves rather than morning sickness unfortunately...

Squiz I agree that being honest is probably the best way to be for some reason I just can't tell anyone except my very closest friends. It's like I'm admitting I'm some sort of failure and I don't want people to know I'm pregnant which is silly as I'll probably tell more people if I mc again. I actually work with a lady who struggled with infertility for years and never had children. She is very open about it but I can't even tell her for some reason. She has asked me about 3 times when I'm going to have another which I found insensitive - maybe she assumes because I've had one DC another would be easy.

Anyway must stop rambling although feel like I could write an essay today - that's what happens when you're up half the night with noone to talk to!!

How is everyone else doing??

Just got a scan date - 12 June so a week later than I'd hoped but apparently they want to see me at 8/9 weeks (although I'll actually be 7.5 by then hopefully) but anyway the consultant is apparently fully booked until then. I asked what to do if I started bleeding and she said contact EPU. I feel like I'm not really getting any special treatment or TLC because of my history but I guess what will be will be and as I had a good 7.5 week scan with my 1st mc and there was still no hb at 12 weeks, I know scans don't make much difference. No way could I wait from 7.5 til 12 weeks though, will have to just pay for scans or cry at EPU if that's what's offered - assuming I even get that far!

Have actually read about lots of women who've had rmc who say they eventually decide not to have scans until 9/10 weeks as they find scans so stressful and also misleading as they don't stop things going wrong.

Grr. Just rang the hospital as my blood results were soo slow. My hcg is dropping v slowly, only 20 per 48 hr so they need to monitor (lucky i chased them!) but no retained products and no molar. I had the tests last week but no one phoned. Just so sick of the physical side!!

Hugs, tea and squiz. All these appointments, investigations etc are so so draining. Squiz - you just want it over at some point, don't you? I've been 'lucky' in that my hcg was down to 44 a week post-ERPC and they were happy enough with that and the follow-up scan to discharge me. I've had mcs in which it's taken a lot longer, though. I suppose it's as variable as anything else in all this.

In a way I do agree with those who prefer to put off scans - I certainly went through a rollercoaster with the various different findings this time round.

Hi everyone.

Squiz I'm sorry you are still hanging on with high HCG. It's important to be able to draw a line under it, I think, awful when it becomes a long drawn out process.

Tea I hope you are doing ok. I think Picardy and School are spot on that the uncertainty is almost worse than actually knowing it has gone wrong. A little hope is a dangerous thing.

I feel crap now I'm home again. We had a good few days in London and the progesterone has kept any actual MC at bay, so the boys were able to enjoy their trip. It feels like coming home to face the music though
I don't know if it's limbo land and it will hit me later, but I don't actually feel that sad about the baby. I'm sad that it hasn't worked, that I have to go through this crap again, that we're no further forward when having a plan had given us a little hope. When I had my first MC in 2009 I was completely devastated, and this baby was no less wanted. I guess I have "grief fatigue" I just don't have the emotional energy to feel that deeply any more. Anyone else or is it just me?