Recurrent Miscarriage Support Thread - Thread 17 - Tests, treatment and trying again

[Flower29]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats

Hey all, just wondering if I could pick your brains. My old consultant put me on heparin until 20 weeks, my new consultant wants to extend it until 28 weeks - my first consultant says that she doesn't think there will be any benefit to that and the adverse effects will be more negative than the positives... I didn't have any blood clotting tests before I got a BFP as I got it a week before my appointment at RMC. What have you all been advised? I'm trying to make an informed decision but I don't seem to be getting anywhere with the professionals... I'm 19 weeks now and really don't want to mess this up!

Thank you tiny!

I think I have felt dismissed at times, or that advice has been well meaning but fails to take into account that I went from all my pregnancies succeeding, to all of them failing, and that this couldn't just be bad luck. Just trying again until one sticks was such hollow advice for me.

Jady, was it Mr Walker you saw, as he said similar things to me. Good to get the ball rolling...

I never had any testing done on "products", they were very dismissive of it helping find out what was going wrong, so I've always wondered if there were any genetic issues in any of them.

Hugs for those recovering from MC and going through all that raw grief, we understand and can rage with you.

Hugs all round for those wobbly thinking about TTC again. Horrible and stressy.

Hug also for those actively TTC. Also stressy and yuk.

Hugs also to you, March, you've had the good advice already, but be assertive about getting an early scan and heparin. My first scan was at 4+6, and showed an empty sac in the right place, which was all that was needed to start heparin.

That empty sac is now a whopper.

I am "term" in just under 2 hours and had my first big pain about 20 mins ago. No other signs of anything imminent, but apart from DH and the MLU, you will be the first to know! of course I have jinxed it now and will still be waiting in a month

We'll be absolutely cheering you on and waiting for news.

Just had tears catch me completely unaware. I was cuddling one of our cats and he put his head on my shoulder and snuggled in for a cuddle.

It just completely overwhelmed me with grief because all I could think was "is this what a baby must feel like?" When you get that dizzying rush of love.

Sat on the bed in tears and it's true, you are so alone in your sadness. DP is downstairs ironing and completely oblivious.

I can't help but feel all he will think is Christ not again.

I'm a bit sick of people asking me how I am. Because "well actually I'm really struggling, devastated that I don't have my babies and I have to face my pregnant colleague every day but I have to remember she finds it hard too facing me" isn't really an appropriate answer is it?

Sorry for the rant. I'm feeling frustrated, angry and raw. And so so frightened about my rmc appointment. That I'll be told to just try again. And that will be it.

The thought of trying again scares the life out of me

sun Sorry to hear that you are feeling a bit deflated by the results. I remember feeling quite similar - I so wanted them to find something treatable, something for which there would be a plan of action about how to prevent/treat it. And with chromosomal abnormalities, there really isn't anything that anyone can do... Unless they find any specific issues with either you or your DH, genetic counselling is probably also not going to help.
I found/find this really frustrating. It really is more or less having to go and hope that it'll be OK next time, but no one can guarantee you that it will be. It's really quite rubbish!
Not sure if this will be of any use to you - but what helped me a bit in those really dark hours was realising that my body had dealt very well with this and done exactly what it should have and not progress the pregnancy - sparing me and my DH having to make that awful awful decision about terminating. I know it's only a little consolation, but I found this quite comforting - as in a way it was the 'right' thing to happen (as wrong as this sounds)! Your body took care of dealing with it, nothing you could have done from preventing it to happen in the first place.
And yes, starting ttc is so scary and without any guarantee. I hope you can get some peace - would you consider taking a break from ttc for a while, to get your head around this?

march Agree with what others have said. If they want to give you the heparin, they should not wait until 8 weeks before starting it, it should be asap, ie. all they need to check that the pregnancy is in the right place.
TBH, I find even this precaution a bit I always get both heparin and aspiring straight from BFP, my consultant never has any issues with prescribing it straight away, having to wait to check that all is in the right place has never come up.

boozle Sorry, can't help with that one! What negative side effects was your first consultant referring to? Lots of women have heparin right up to the end of their pregnancies, as long as your bloods get checked regularly, it should be fine. In some cases, they even increase the dose in the 3rd trimester. What reason has your 2nd consultant given for continuing? Hope you can get some clear guidance on this! It is so confusing when two doctors say the opposite - who do you trust?!

sun and cloud just to clarify about the genetic counsellor: sun I see that they wouldn't refer you to one as at the moment there is no cause to. I was just thinking if you wanted to talk about translocations and the likelihood of the T22 being random vs genetic, they would be able to explain the biology behind it all. I was referred after a bad 12 WK scan, to help make the decision about whether to terminate or not, and because there may have been a chromosome issue (there wasn't - unknown cause of the serious abnormalities). Although we have no known genetic issues the genetic counsellor has always been so helpful in talking through results and explaining things in more detail, answering my numerous questions about chromosome issues and the implications for future pregnancies. I see it may not be helpful for everyone, but she is the one person who has really listened to me, so I guess I am a bit biased.

I have felt dismissed brummie, by RMC consultants who say 'just keep trying' and disapproved of my decision to go to Coventry, and by GP's who have said 'I'm sure it will be ok next time' - it never is. Some good ones along the way too. And definitely people seem to forget very quickly tbat you have had a mc, and having more than one doesn't seem to change that. The expectation is that you get on with it. And I do. But I also feel very isolated, misunderstood, and alone at times.

jady glad you had a good appt

Tanny thinking of you!

Sorry boozle I don't know..hope you get some answers.

march I agree with everyone else about the heparin. And the extra stress of different systems and trying to get hold of meds that one person recommends and one doesn't, is not helpful. Take a deep breath- you will negotiate your way through it.

cloud were you given heparin due to previous DVT? If so maybe the risk of tbat recurring would be higher than the risk of an ectopic?

Morning Ladies,
Sorry I've been quiet - busy at work, knackered at home!

Boozle, I don't know about continued heparin after 12 weeks. I hope you are able to get some clarification.

March, hold your nerve with the testing, remember, how hydrated you are will make a difference on tests as this stage. Don't drive yourself mad with it. I would definitely push for a 5-6 week scan, though. Badger that nurse who saw Prof Brosens speak about your heparin. Good luck.

Sun, hope you're OK after your T22 diagnosis on your last baby. It's a lot to take in. Like Bootles and Cloud, I came to feel some relief after the initial frustration of the genetic diagnosis (my 3rd was Monosomy 45 - a missing X chromosome - aka Turner Syndrome). Whilst frustrating that it was 'random', I also felt that I was 'off the hook' as I knew that there really was nothing that I could have done to change the outcome. I was also (and still am) grateful that I didn't need to make the decision to terminate; by the time the mmc was discovered, I was 13 weeks and the baby had died some time after 10. It was a shock, still, and I hope that someone will be able to talk you through your results properly. DH and I both had karyotyping, too, because there is an indirect family history of a translocation on DH's side (we were fine). I don't think they test routinely, though.

Sorry, I can't remember who said that they would test you but not the baby? I do find that surprising? Prof Regan at St Mary's said in her book that it's one of the most important pieces of information you can have to do full investigations (although this was 2001, pre NK cells etc.). I'd query that.

Tanny, thinking of you. Good luck! Try to rest up as much as you can.

Baking, how's Faith doing? Thinking of you all.

I've been starting to feel a few pregnancy aches and pains, especially under the ribs. At (only) 21 weeks tomorrow, I feel like I need to find a way to relieve it effectively otherwise it will be a long 19 weeks to come. Not that I'm complaining... but ouch! Baby still seems to be kicking mostly on one side (so I'm worrying that there's terrible reason why it's over one side and can't move or turn for some reason). Fingers crossed it will shift itself in time for the repeat scan next week!

I also have felt dismissed before, but not at Coventry - they were the first ones that really made me feel that there was something that could be done, even with 'normal' results. Prof Quenby said that the pattern of mcs showed that something wasn't 'normal', and I felt that I was being taken more seriously. St Mary's were great during investigations and I was grateful that they removed my septum, but once the tests were all back as 'normal', I did feel rather cast adrift.

Waves to everyone I've missed.

Thinking of you tanny, keeping fingers crossed!

I don't think I have felt dismissed by the NHS. Although I have heard the "just keeping trying" from GP, consultant etc, they also acknowledged how hard it is. I have definitely felt dismissed by my family though! They are not great at feelings at the best of times, and what we are going through has totally thrown them for a loop. They don't mention it. My sister who is pregnant (same time as I would have been) even complains about being pregnant!

just sorry you are having aches and pains. Don't be worrying about baby being stuck on one side, it won't be, they just do that, and it will shift over at some point.

Totally agree that Coventry have always listened and acknowledged the losses. At St.Mary's I saw some lovely people, and some not so helpful people.

Hi everyone

I’ve been a bit awol recently, although I have been lurking. So much to say!

march woo hoo!! Big congrats, echo what others say about stepping away from the sticks. The colour of the line can vary for so many reasons it really is meaningless. I hope you get an early scan to reassure you.

me2 you asked whether there was any update on lining, the short answer is no. I’m doing acupuncture, drinking raspberry leaf tea and taking vitamin E - My last af was light again and 2/3 days long so it’s not made any noticeable difference yet. My GP has referred me to the gynae unit so am waiting for a letter confirming my apt. God knows how long that will take. In meantime trying not to panic that that’s the reason I’m not getting pregnant again (6 cycles since mc and counting).

I’m really surprised that someone was told it was a waste of time to do chromosome testing on the foetus. Given that;s the most common reason for a miscarriage that seems really odd. Both of mine were chromosomal problems and that has definitely helped me get closure – they were never going to be healthy babies. sun my second was also T22. Random appararently. Hugs to you

brummie so sorry you had a cry (but sounds like a lovely cuddle with your cat). It’s so lonely and isolating sometimes. I too think DP just goes ‘oh god, here we go again’ if I get upset. You mentioned getting married didn’t you? DP and I are the same, were going to wait until after baby but now thinking we might just go ahead and do it anyway. Or rather, I am thinking that – he tries to avoid the conversation as much as possible! He sounds just like your DP in that regard. Likes the idea of being married but the big white wedding is just not his scene at all. Am trying to convince him it doesn’t have to be like that so we will see! Like you said, it would be a lovely thing to plan and look forward to. I would just hate the whole MC thing to cloud it though….

tanny so excited for you!!!!

cloud am so sorry af came. It’s such a slap in the face. Especially when you feel you’ve done everything ‘right’. Something that has helped me in the past has been reminding myself that (apparently) about 80% of eggs are fertilised but only a small number of those actually implant, because there’s something wrong with the sperm or the egg. All completely natural, it’s just what happens, nothing to do with age. When AF arrives that thought sometimes helps me stop beating myself up that we somehow missed the opportunity and didn’t try hard enough. Perhaps we did and it just wasn’t meant to be. I hope that doesn’t sound trite, it’s given me some comfort so thought I would share . Having said that, AF is due here anytime from Thursday onwards and I will be devastated when she arrives. I’m pretty positive I’m not pregnant. I just don’t feel it. Already starting to feel premenstrual and crampy. Isnt it such a cruel joke that cramps can also be a symptom of early pregnancy? They are with me and everytime I get them I think ‘oooh, is it is it?’ and lately it never is

Waves to anyone I have missed

DS has picked up on the concept of siblings, and keeps asking where his brother is....sigh....

Sorry this is a me me me post, but I really need to get it out. I've just had a little breakdown and been sobbing my eyes out. I don't know where it's come from. I was looking through some papers on top of my drawers and thought I'd look in my memory box from my 1st mc (I still haven't been able to put it away) and as soon as I reached for the scan pic I couldn't stop crying. she looks so perfect and tiny on it, why did she have to leave me. I feel such a longing for my baby I feel sick. I haven't cried like this since the days we lost her.
I'll do a proper post in a bit and respond to others, just struggling to compose myself now.

I've felt reasonably well looked after by the nhs - particularly since I 'upgraded' to a recurrent miscarrier. Before then I found people could be quite dismissive. I agree that after the feed back appointment at St M's you are pretty much left to get on with it, but they do come back in to their own when you get that bfp. They've tended to have quite a pragmatic approach (as opposed to a more 'fluffy' one perhaps) which I tend to prefer as it helps me keep tears at bay.

I've now arranged an additional 9 week scan for Thurs at my local epu. Relieved I a) don't have to wait till next week and b) as DH can't come to London next week I'd rather find out closer to home if something's looking amiss. I confess to flashes of being excited about seeing the baby - and then I tell myself not to be so stupid as something will have gone wrong. But I do enjoy those little flashes of what it must be like to be a normal pregnant woman!

To contradict that I did have a horrible miscarriage dream last night ??

Tanny - arghhhhhh - exciting stuff!??

Oh Bootles - kids huh. I know it's not the same but my niece once looked at me and said "when will you and uncle twilight have a baby - all my friends have cousins". Ouch.

I agree that genetic testing on the baby is very useful. If it is a chromosome defect that gives some closure, and leads to discussion of whether it's a random thing or whether parents need to be tested. If baby is normal it puts a stop to all that 'bad luck' bollocks.

Gulp bootles. Makes your heart hurt when they say things like that. Dd was talking about sisters and brothers the other day too.

Flower - hugs. It's just horrible and so so sad isn't it. I have the same sneak up on me every now and again. A meltdown every now and again is completely understandable and healthy. Don't feel you have to respond to everyone if you're not up to it. Focusing on yourself for a bit is okay.

Sorry you've had a difficult day flower. I don't have any pics of any of the mc babies (probably a good thing for me as none of them looked good). I think it's ok to have a little cry every now and again. I feel like it builds up inside me and though it's hard to feel the full strength of the sadness again, I always feel a bit better after I've cried. I hope you do too x

On the sofa now with a strong .
bootles must be hard hearing that.
brummie sorry you've had a little breakdown too, it's almost shocking how it just comes over you when we're not expecting it. Can't imagine how hard it is to see a reminder everyday at work, you've every right to feel the way you do.
sun sorry you're feeling down after your results. I hope someone can provide you with more clarity on your situation so you can move forward from it.
baking how are you? And how is Faith doing?
barking I think you mentioned your due date is coming up, I hope you're coping ok.
monten you never know until af shows, my fingers are crossed for you anyway.
twilight thanks and good news about your scan date, will be looking forward to hearing about it on thur
tanny Exciting! I wonder if it's happening now as I type! I know your news in the coming days will cheer me up and I'm looking forward to it!
march hope you get your scan sorted too and get the treatment you need
just I seem to remember my son 'kicking' on one side, then as time went on he could turn so it would swap, but then towards the end it's a bit snug in there do I could feel him stretch his legs and feel it at both ends!
flen sorry your family are being a bit shit, mine are similar (hope you don't mind me saying that!) don't think I'll ever forgive my sil for not even txting me after this one. Whilst my parents acknowledge it (and I'm sure they were devastated too) they never talk about feelings. My mum would rather help practically by looking after my son rather than give me a shoulder to cry on. Must be even worse that your sister is pg too! Sure you've heard this before but it's prob because they don't know what to say and don't want to upset you. But it's not much comfort when it's your own family who we expect for support.

The lucky socks came through again yesterday and my hcg bloods are now at 2 so classes as 'normal'. Although I also stubbed my toe which bled which seems ironic given they're meant to be my lucky socks!

Sorry if I've missed anyone! X

Sorry for you flower but as others say, you have permission to cry every now and then (and more). I haven't looked at my scan pictures for a while. I remember getting pretty desperate in the consultant's office when he couldn't print off the pic of the last scan before I went up for the erpc. It's not like there was much to see, but it would have added to what little I had.

boozle how confusing re heparin. I don't know anything about it but hope you get a decision about continuing/stopping which you're happy with. What are the negative effects of heparin anyway? I presumed that it must be safe if given out in pregnancy.

Thanks monten for remembering update, even if no news yet. Im pursuing all the tests and going to Coventry, not because I think they'll turn anything up but because I want the scratch if it improves lining. On 3rd AF since last mc and it is improving slightly but not much. I take evening primrose oil, which helps with estrogen I think, which helps liking I think! Still can't work out if light AF and lining are linked. Consultant says ignore AF worries.

brummie I don't think I've been dismissed. More sympathetic and helpless looks and words in my case. My consultant and gp seem very sorry about the mcs but don't have solutions.

Waves to everyone else.

baking how is faith doing?

flower Hugs. Those bit bursts of crying do ambush every so often, don't they? It's part of the grieving I think. Sorry to hear your family are a bit shit (!) too. I am mostly ok with it, but sometimes do find it very hard.

Still here.

Hugs flower. I have no photos, but all of mine were so early that there was never much to see, just an undeveloped sac. Sobbing uncontrollably is good for you, imo, you are grieving and that comes in waves x

flower sorry, cross posted earlier. Have a damn good cry, bottling stuff up does no good. Hope the is helping.

Faith is about the same, thanks everyone for thinking of her. No more spasms but the eye rolling which they seem to think is a manifestation of the same brain activity is no better. I'm massively frustrated trying to get hold of anyone, we were told her consultant would call yesterday, chased today, now his secretary will get her notes for him and he'll call tomorrow.....
Big rigmarole yesterday about getting her meds from GP rather than hospital pharmacy. We want to get a chickenpox vax for DS2 to stop him passing it to F, but I can't even speak to anyone about it today, I'll have to ring every 30 seconds from 8am tomorrow to book a phone consult. Nobody has any sense of urgency about any of it and it's driving me insane!

flower - hope you are doing ok. Is completely normal to have a meltdown once in a while. I had one last night while brushing my teeth! A though popped into my head about how I'd been so full of hope just before xmas compared to now, and that was it I was a blubbering wreck. As someone else mentioned, I really do think it is part of the grieving process as a way of recognising / releasing some of the emotion. Take care of yourself - hopefully you can have an easy day on the sofa.

I have also felt dismissed - often by the nhs but I think that's mainly because I want them to find the problem and treat it so it all works next time. But they can't. Each time I see the coagulant she says 'you may not believe it now, but the most likely scenario is that next time you will have a healthy baby'..... Want to scream that that's all very well but why am I never falling into that 'most likely' category?!

My family are also rubbish when it comes to anything emotional. One sad side effect of the mcs is that after their reaction at xmas (basically telling me I was silly to continue trying) and then not phoning me for 4 weeks to see how I was, I actually feel really distant from them now. Now they do keep phoning and asking why I'm not calling them often like I used to but somehow I just don't have the energy to explain.

bootles, cloud, just (sorry if have missed anyone - thank you for sharing your experience of a diagnosis of chromosonal abnormality. It definitely makes me feel better that there was nothing I could have done differently. It does really scare me though in case they were all chromosomal (1 and 2 weren't tested) and either there is a structural issue which the karyotyping will tell us or I just have bad eggs due to age . cloud - I would love to take a break from ttc while I process all this but already feel like I am over the hill reproductively so just feel I can't afford to lose any more time.

twilight - well done on pushing for an additional scan. Keeping everything crossed that it goes well and you are able to feel excited (although I guess the fear and doubts never truly go away).

Hugs to all.
x