Recurrent Miscarriage Support Thread 29 - Support for Tests, Treatments and Trying Again

[barkingtreefrog]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread here

Link to the RMC investigations information

Stats update:

allthereis: 29. DC, 4MC
anniehoo: 42. TTC#1 for 2.5yrs, 4MC
barkingtreefrog: 36. TTC#1 since Dec 11, 2MC
bettybutterchops: 40. DS, 3MC, pg
bootles: 41. DS, 1TFMR, 4MC, pg
brummiegirl: 38. TTC#1 since Apr 14, 3MC, pg
bubblybubbles80: 34. TTC#1, 3MC
bumblebee0: 29. DS, 2MC, pg
bunnymad: 40. DD, 2MC
bythesea82: 33. TTC#1 since Dec 12, 3MC, pg
casiopeia: . TTC#1, 3MC
chrystley: 41. DD, 5MC, pg
cloudjumper: 43. DS, 4MC, pg
confu3ed: 39. DS, DD, 5MC, pg
desperatelyhopeful: DS, 10 MC.
emerald72: 43. DS, 3MC
enlightenedbunny: 34. TTC#1 since '10, 1TFMR, 3MC, pg
erica21: 32. DS, 2MC, pg
extrablessings: 33. DS, 6MC
fackinell: 44. TTC#1, 4MC
fififolle: 37. DC, 2MC, pg
flen: 36. TTC#1, 3MC, pg
floweroct: 34. TTC#1 since 11, 3MC
frecklefire: 40. DS, 3MC
genwah85: 29. DS, 3MC, pg
girliesaints: 37. DD, 4MC (1 twins)
girlinoz: 32. TTC#1, 3 MC
Ifinishedthebiscuits: 37. 2DS, 4MC
iloveyoubaby: . DD, 2MC
inamaymaybewrong. 37. DS, 2MC
jady77: 37. TTC#1 since Sep 14, 2MC, pg
kazz2112: 31. TTC#1 since Feb 14, 3MC
lauren83: 31. TTC #1 for 7yrs, 2MC (1 twins)
leah1984: . TTC#1, 2MC
loopyaboutmy2boys: 38. 2DS, 6MC
lovemylittlebear: 29. 1 ectopic, 2MC, pg
marchgirl: 37. DD, 5MC, pg
maverick79: 35. TTC#1, 2MC, pg
me2me2: 2DC, 2MC
mimidoddrioni: 35. TTC#1, 2MC
minnie74: 40. DS, 3MC, pg
monten: 37. TTC#1 since Apr 13, 1TFMR, 1MC
morganlefey: 29. DD, 3MC
mrsb0710: 29. TTC#1, 2MC
mrsconfusion: 36. DD, 3MC, pg
mrsdiddlydoo: 34. DS, 2MC, pg
notspartacus: 39. 2DD, 2 ectopic , 3MC
onedaymaybe1: 32. TTC#1, 3MC
onestep2015: 39. TTC#1 since May 13, 3MC, 1 ectopic /PUL
patienceisvirtuous: 37. TTC#1 since Mar 14, 2MC, pg
peqpit: 33. TTC#1 for 2yrs, 3MC
portmoon: 43. DS, DD, 5MC
sallywade: 36. DS, 1TFMR, 5MC, pg
sashakerr: 37. DS, 3MC
sebsmummy: 40. DS, 3MC, pg
sizethree: 35, TTC#1, 3MC, pg
snoopysimaginaryfriend: 29. TTC#1 since Sep 14, 3MC
spamminit: 25. 2DS, 2MC
strubidooo: 34. TTC#1 since Sep 12, 3MC, 1 ect
sunandrainbow: 38, TTC#1, 4MC, pg
teach3: 27. TTC#1, 3MC
texta: 32. TTC#1, 3MC
thepopandcry: 38, DS, 4MC
thornfield38: 34. TTC#1 for 2 yrs, 2MC, pg
tomcat81: 34. TTC#1 since Oct 14, 2MC
twilightstruggle: TTC#1 since Nov 12, 5MC
wadsy: 36. DS, 1 ectopic , 4 MC, pg

ourdaywillcome
daisybell

Thread babies
bakingtins: 40. 2DS, 4MC. Faith born May 14
tannyloo: 42, 2DS, 5MC. Bertie born Mar 15
tinytear: 41. DD, 5MC. Alice born Mar 15
justonemoretime: 39. 3MC. Scott born May 15
purplefrogshoes: 38. 2MC, 1CMP. John born May 15
longestlurkerever: 34. DD, 3MC. Beth born Jun 15
catlover2014: 35. TTC#1 since 09, 3MC. Louis born Jun 15
boozle80: 34. 3MC. Mhairi born Jun 15
belleende: 40. TTC#1, 2MC, 1 TFMR. Cissy born Jun 15

monten sorry you are feeling so low and angry. Definitely part of the process though, and as freckle said, you should be angry, and have every right to be. I know what you mean about preferring people to be a bit horrified, it's definitely worse if people shrug their shoulders and say oh dear. I want people to recognise and validate how utterly shit, heartbreaking, and agonising RMC is. In your case, being told twice that the issue was a random chromosome problem, it must be really hard to accept that it's happened again, and taking a year to get pg doesn't help. It may well happen much quicker next time, it often seems so random. Hugs xx

Minnie how is the cramping? Hope you are OK x

hels when I started looking into mc and tfmr's after my own experiences with the first two, like march I saw the women with 3,4,5 mc's and thought God how awful, how do they keep going? But I really didn't think it would be me a little down the line - though I had a fear it would be. But it WAS me, and 5 losses later I had accepted I was definitely in that group. There are plenty of success stories after 5, I know you may be a bit low on hope right now, but there is hope there. Hugs x

barking gosh it sounds like you need a spreadsheet for the tests! Good that your Dr follows the work of Dr Beer/Chicago tests - that's one area covered. It's really confusing when everyone disagrees, so to get each possibility at least looked at is a start. I see your point about pred and intralipids - I'm not sure that throwing medicine at it 'because we don't know and we may as well' without anything specific to treat, is such a good idea. In terms of the NK cells, I just don't know I'm afraid. All I know is that a much higher proportion of the blood tests come back positive, and it's not clear whether high blood levels affect things in the same way as high uterine levels. On the other hand, NK cells are still bit unclear all round - I think even Coventry would agree they still don't really understand it.

I agree that there is alot tobe said for keeping stress levels low, and aiming for convenience. How much financial difference is there do you think?thousands or hundreds? It sounds like you have learnt some things about your MIL which are quite difficult for everyone - hope you, she, and dh are OK . I'm sure that as she understands what you are going through, she would want you to do what's easiest for you and dh? (Knowing nothing about her finances though!) What a shock to find out she struggled so hard to get your dh.

I doubt any of that was very helpful I'm afraid, it's clearly hard to know what to do, I hope you reach some conclusions over the weekend. Also when you get to the ivf explanation bit, what's the difference/why, is there a long protocol and a short one? X

I am struggling to do fb and here, think I will stick here and flick on and off of fb.

I'm finally back in! Had to reregistet and even that wouldn't work! Will have to re-read to catch up but oneday great news on the scan!

barking I don't know what to advise on the tests it's so difficult to know what to do and so easy to spend so much money!

Well I've started ivf now, started injections on Tuesday, had a scan yesterday and got to go for another one on Tuesday!

floweroct am crossing absolutely everything that this is your time. When are all the big dates? So hope it goes well.

monten totally fine to be angry. Why wouldn't you be? It's totally shit and unfair. I always felt mc1 before ds was just one of those things. Then mc2 after him was just going to be the same pattern-sort of one off, one on- then mc3 changed that and was emotionally probably the worst as I began to realise that it wasn't all panning out how I thought. And the fact it was chromosomal meant my age was a massive factor. But I still thought well three in a row that's so unlikely! Then mc4 came along and to be fair has pretty much destroyed any hope now. I was telling my sil, who is all for us trying again, that I'd take another 3 mcs if I knew in a years time I'd have a success but to think of three more with no guarantee is so bloody hard!

march glad you've had your booking in and I agree that it's better to have someone shocked when they hear about rmc than to be blasé about it. My midwife last time wasn't bothered (although it was only 2 then!) I've seen her since though and she has never said sorry to hear that baby 4 didn't make it. She's probably far too busy to remember and I'm just projecting my own bad mood on to her to be fair though!

barking did you come to any decisions?

Still getting weird cramps here and not much bleeding unless I've had a wee (sorry tmi!) Got a feeling this time the bleeding is going to drag on which is frustrating for getting on with trying again. Might try a hpt early next week and see if it's a bfn then.

Had a horrible dream last night that I got pregnant at 47(!) and my 13 year old daughter was shouting at me that she hated having a 60 year old mum and everyone laughed at her at school. I woke up pretty depressed about it all. Even though the likelihood is I'd give up at 43 so it would actually be a 17 year old shouting at me!

Barking monten bootles - sorry if I have left anyone out but hello all!

I have an appointment at the EPAC tomorrow morning to talk about the options - but I think I've decided to do the ERPC - its a U-turn because at first I was dead against it. But the reality is nothing at all has happened, so it could be a very long wait, and at this stage I'm just focusing on getting some normality back.

We're fortunate that our local EPAC has been pretty good and last time I did the ERPC there was no wait and the staff were lovely.

I thought about raspberry leaf tea but didn't want to tinker too much before I made my mind up:)

bootles thank you so much for the encouraging words - there is hope after number 5. You need nerves of bloody steel though;)

xxx

barking i meant to say, i had the uterine biopsy for nk cells and my understanding is the point of that is, it is a more useful indicator than just testing the blood. I asked Mr Gazvani if the fact i'd had flu when the biopsy was done would effect it...his explanation was no it wouldn't because the cells in the uterus behave differently, and that is why he uses the biopsy not blood tests. To me the blood test seems less helpful. Hope this helps x

floweroct absolutely everything crossed for you - what protocol are you on and what drugs/dosage? How are the follicles doing?

bootles I got up this morning at 7 to
go open water swimming. When the fet failed I signed up for a sprint triathlon next weekend. Gulp. Not done open water in a race before. The level of skill I have was clearly highlighted by the two safety kayakers coming over and asking if I was okay . I will not be winning any medals next weekend!! I then went for a run with DH, a friend, and both our dogs. I'm now going for a nap... I'll come and bore you with the ivf stuff later

Just got off the phone to the MiL. She agrees with everything I said. The clinic is a well regarded one, and it being on the doorstep makes life so much easier it doesn't make sense to go elsewhere. There's no point not getting the tests done as it leaves us open to thinking 'what if?' further down the line. (Hels I've knocked two tests off the list as the treatment if positive would be heparin, which I'll be on anyway for the factor V leiden, but to avoid the what if factor I've decided to go for the nk bloods). She said go ahead and book it in, she's happy to pay .
So I'll be calling on Tuesday and seeing when I can go in for my bloods. I don't think we're going to get the tests and results done soon enough to start next cycle, so we're probably looking at day 1 mid October then downregging November and stimming Nov/Dec. We're on long protocol this time.

barking well done for navigating your way through all that info and all those choices. Sounds like you've reached some decisions you are happy and confident with, and that's what's important. Hope the difficult family stuff is calming. And can't bloody believe you were open water swimming so early.

hels I had a two week waiting for miscarriage to happen with mc3, and went ERPC in the end. Hope the EPAC appointment is helpful.

minnie sorry to hear the bleeding is not straightforward, it' the last thing you need. And dream can be utter bastards, that sounds like a really stressful one. Hugs to you.

bootles hello! How are you doing?

flower that is exciting about ivf beginning, will be keeping everything crossed for you.

monten I don't think what your counsellor said sounds wanky at all, it sounds important. I think we don't often place enough weight on what it is we are going through, there's little understanding from the outside world and generally a sort of unspoken expectation that we should just get on with things. To listen to the parts of ourselves that need looking after and to do that is so important.

Ooo. Good luck with the ivf flower. Got everything crossed for you.

flen, i agree we're expected to just get on with it, especially as we have more because we must be used to it by now, right?

hels, glad you've got a plan b. Although it's not your first choice hopefully the erpc can give you some closure so you can start to heal. The limbo is the worst bit. There absolutely is still hope after 5 though. Hope is all around you on this board. tanny was my big inspiration on this board and she now has bertie after 5mcs

barking, so glad you've made your decision and that mil is supportive of whatever you choose. I agree that not looking back and thinking 'what if' is extremely important (although hopefully you won't have to look back)

minnie, that's exactly how i felt. That i could go through several more if i just knew it would end in a baby, i think even if i didn't know when, as long as i knew it would eventually. It's so hard to keep the hope going. All my hope abandoned me after mc3 but eventually crept back in, and each time since it has absconded but then come back, despite me thinking it was gone forever. It is sneaky and silent and comes in little bits when you least expect it, never all at once. But it does come back, slowly.

minnie i know exactly what you mean. If I knew this would end in a baby I could deal with anything, anything. It's the not knowing that's crucifying. I feel like I'm living in a nightmare and don't know how long it will be till I wake up. Your dream/nightmare sounds horrible but all it is is your subconcious playing out what's on your mind. It's horrible when it's quite so literal!

Massive good luck for IVF floweroct.

Good luck at the EPU tomorrow hels. You're being very brave

Thanks flen march and monten I think it's the not knowing that's the worst isn't it. I wish I believed in fortunetellers/psychics! I think you're right march that the positive thinking does come back, it just trickles in slowly. I'm thinking for my mental state I need to set some sort of end date to all this. Maybe this time or dec next year maybe. I'll be just 42 then and I think that'll be enough for me then. I suppose that does depend how quickly I conceive again though. If it goes back to taking over a year I'm pretty much screwed!

How are you doing monten?

helsgood luck with getting the ERPC sorted out. Glad you're feeling happy with your decision and hope you don't have to wait too long xx

Hello all, not too sure if you gals remember me, but I joined the thread a few weeks back...i tried so hard to keep up with you ladies, really I did. But just couldn't keep up with everyone's posts and stories! I know I probably shouldn't be sharing my news on here as I haven't really put much 'time' into this thread....

But tested today and got my bfp at 9dpo on 2nd cycle after mc no.2

I'm now completely shitting my pants, worrying if I'll mc for a 3rd time, I've not long gotten over glandular fever that put me in hospital and subsequently caused me to mc no.2, my blood tests still showing glandular fever virus is hanging around, I don't 'feel' like I have it any more, but I'm scared its going to come back with a vengeance! I eat super healthy, and have done everything in my power to get myself fit and healthy so I can have a baby!

This pregnancy is different though, my poor poor boobs, nausea, reflux, burping, random muscle cramps, major mood swings....

And fanny daggers, oh the FANNY DAGGERS....also a* daggers too

Anyway, thanks for listening, gonna beg doc for reassurance scan at 7 weeks, would be lovely to see a heartbeat before we go on holiday...just to put my mind at rest!

Hoping having such strong symptoms is gonna turn out to be a good thing,...

Love, light, strength, and baby dust to all Xxx

Oh,...and my farts could kill a grown man

Minnie I had an end date. I was going crazy with it and could take no more. June 2015 would be 3.5 years and that was long enough to be temping, charting, on diets, off alcohol, limiting exercise, not booking holidays in case they clashed with treatment cycles, etc etc. Then we had the frozen embryos so we stretched it. Now we're starting a while new journey of tests and treatments and DH is the one insisting on an end date to the madness.
I was quite forceful about my June 2015 end date, others told me to just see how I felt as I might change my mind. I was adament. No more. My hat tasted quite nice.

paws xpost -congratulations!

Thank you barking, sorry to hear from your above post you're not having the best time atm X

Congrats paws. Hoping this is your sticky bean

I think it's sensible to have an end date but also to be flexible and not give yourself a hard time if you want to stretch it. Circumstances and feelings change and i think it's ok to acknowledge that x

Exactly, March. I always said when the NHS options ran out that would be the end of the road. Gambling our entire savings on something that might not happen wasn't an option, as we could end up with no baby and no money to move on with our lives either. When MiL stepped in that changed, but when I told one friend she said 'oh, I thought that last round was you done' as if it didn't really matter after all that it failed and she wouldn't have had sympathy if she had realised it wasn't the 'final' result?! Weird.

Congrats paws hope this is your take home baby x

barking weird of your friend to not understand. I agree with changing end dates. I said I'd stop at 40 (didn't want to be 41!) I've had 2 mcs since then and now I'm thinking stop before I'm 43. Who knows what I'll think then!

Thank you for all the congratulations girls... May I ask some advice please?

I've been wondering if taking a low dose asprin may help this time around...(obviously I know it could only possibly prevent mc if you have been diagnosed as having blood clotting issues)
My fertility tests won't be for at least another month, I know it wouldn't do any harm if taken and not needed, but I'm worried about needing it and not taking it?

Congratulations paws! I think everyone on this thread completely understands the anxiety about mc'ing again, but the strong symptoms do sound like a good sign.

Monten I work in mental health myself and I think self-compassion is crucial, it's so easy to beat ourselves up (I've done this to myself over and over) about a situation that none of us chose and that we have quite limited influence over. That's great that you found a therapist who helped you before.

barking good to hear your hat was tasty! Very impressive that you've managed to digest all the info about the tests, it sounds like you've come to a decision that works well for you, dh and mil.

So I finally had my blood results back from the RMC consultant - pleased that they all came back normal (even though I still worry there's something they haven't found) We've started TTC again and currently in the middle of tww. Usually I wait until AF is due to test, especially as I've never had a bfp on the day. This time knowing I might get some progesterone from bfp I'm tempted to test earlier and more frequently (daily?) than I have been doing so far.

forest I tested at 9 dpo and got a very faint positive then, and did it every two days thereafter. Started taking the prog I think with the second positive test...

Whispered congrats paws, everything crossed.

march I forgot to comment on your booking in - it's shit scary going through that process. But done now. A positive step x

floweroct Absolutely everything crossed for the ivf, keep us updated!

barking that sounds like a plan with the process and the testing. I swam in a river in January once, years ago, as part of some kind of organised madness - lots of running in mud too. I feel the cold dreadfully and am only competitive with myself, couldn't give a monkeys if I come last in things etc. It was awful, never to be repeated, so open water swimming is only for me in v hot weather! Yes update on ivf when you have a chance/have warmed up.

minnie and monten I have said the same..if I only knew it would end well it would make it all so much easier to cope with.. I think my age has pushed me on (42 in december) as it does so many on here, which has brought a horrible extra desperation, so I never felt I could miss a month of trying. It has helped me to ask myself what decision I could be 'comfortable' with in 10 years time - continue trying or cut my losses. If this one were to go wrong now I don't know which way I would go. I think, especially when you both have had such recent losses, that hope is hard to hold onto, but there IS hope. It just may take a little time to filter back in xx

flen hello, I'm ok thanks, continuing my policy of not telling anyone and having high levels of anxiety. Not long until 20 week scan, scary. How is your sickness?

forest good that all your tests came back normal. I always start testing on day 9 post Ov...lots of internet cheapies as I have never been able to hold back from testing daily.

Going to need a new thread soon and i'm fucked if i know how to do it!...

bootles I'm sorry to hear the anxiety is still so high. Have you had a scan between 12 and 20? We are thinking of booking in for a private one. When is your 20 week one? The sickness has definitely subsided, but am still having some days where it knocks me for six. Am panicking about how I will manage work and it when I go back from Wednesday, especially as the vomiting has teh unfortunate side effect of ahem some loss of bladder control... GP visit soon I think!

ANd congrats paws, albeit a very gentle and hushed congrats!