Recurrent Miscarriage Support thread 13 - tests, treatment, trying again

[bakingtins]

Welcome everyone! A thread for anyone who has experienced recurrent miscarriages and is in need of information, companionship, tea and sympathy. Newbies welcome to join at any stage.

Start with the traditional recap please......

Hi erica it's v hard to come to terms with a second MC. Easy enough to accept the "bad luck" line once, much harder a second time to quash the worries about something being wrong, but nobody takes you seriously. I no longer have the prof Regan book to hand, but basically your chances of future MC don't increase significantly (from the background rate of 15%) until you've had 3, and even then the odds are about 70% success in the no-cause-found group, and similar for the treatable causes.
It's worth asking your GP if they will run some basic tests, you could at least rule out diabetes and thyroid (plus the clotting things if you are lucky). I have heard some women being referred after 2MC if they are >35 or also having fertility issues, but that would be against NICE guidelines at GP's discretion. No harm in asking though. You can pay to see a consultant privately but it's expensive. The standard NHS tests find a cause half the time in the group with 3 consecutive MC, so presumably less likely than that to find a cause after two (since more will genuinely have had 2 'sporadic' MC due to chromosome problems)
I went private after 3MC but not 3 in a row (MC, Ds2, MC, MC) as at 38 I didn't feel I could wait. GP did a lot of the blood tests for me as advised by the consultant but even so we spent £800 and came up with zilch. When I then had MC4 I was told the RMC couldn't do anything for me, though they did test the embryo and it was normal. That prompted me to go up to Coventry to the implantation clinic and I finally got my diagnosis. It's quite hard to live with knowing that I probably lost all 4 for the want of little white pills, but I made the best decisions I could at the time.

Sorry to hear you've having such a hard time erica. I found the second one incredibly hard for the same reasons, that you're in no man's land between being 'just unlucky' and them actually testing. I was very angry with the system and still am a little bit, as I feel they could at least do some of the simple/cheap tests after 2,but of course it's all a money thing, which doesn't help you.
I second bakings point that the stats are still very good for you, in fact they are still very good for me too and I try to tell myself that a lot. But I know this doesn't make things feel much better when you are worrying that there is something wrong.
It is very frustrating but you only have to read all the positives on this thread and the 'pregnancy after MC' one to be little more hopeful. We are all here to vent to whenever you need it and for support when you ttc again, which we all understand will be hard

march I'm so sorry to hear your news - how frustrating. The ideas suggested all sound like good ones, I really hope they work out for you.

erica Sorry to read what you've been through, it is just horrible. I absolutely agree with what the others say about the feelings after mc2, and hope some of their ideas might help.

Right I can think straight now...sort of. The GP was fairly baffled and said I wasn't making his afternoon any easier, but gave me a weeks worth of pred, and an ante natal appointment with the gp clinic next week. I don't want an 'antenatal appointment' because I can't get my head round all this, this time, and it sounds too forward thinking. Will go of course.

Tanny I am sure your bubba is perfect, and it does of course help to hear. I think of you too baking, and I know pred has got to be pretty safe

Argh pressed too soon...I know pred is pretty safe, and that my chances are probably much reduced without it, I'm just a worrier.

tiny great you heard the HB!

boozle hooray for cooperative doctors!

Erica-I was in the same position after two official MCs, with my nurse led epu unit refusing to refer me as had already carried first daughter to full term no problem. I went to see my GP who was more sympathetic and has referred me after completing some initial tests. I'm currently awaiting my appointment with the consultant in the new year. I would suggest seeing your GP and see if you get a better response x

For those waiting to ttc, I hope the time passes quick and you get some added relaxation benefit from it.

just poor you..it does sound very likely to be the last bits of old blood from the cervical irritation. We are here for you on Friday.

march sorry you didnt get results. That must be incredibly frustrating. Hugs (( ))

Gah sorry for mammoth posting..doing it in sections is the only way I can read back and respond...

Erica I echo what everyone else has said. It does seem so unfair that the system works this way. Good luck with taking things forwards.

Thanks to everyone for their comments re bfp. I feel only fear to be honest.

The fear is totally understandable bootles, after what we've been through I don't think any of us can have a fear free pregnancy, but try and allow yourself a little hope too. It will make the time pass quicker and it can't make it feel worse. You have a plan, treatment and remember, today you are pregnant

march feel your frustration, hope you can get something sorted.

erica really just big hugs to you, nothing to add others haven't said but be kind to yourself. Your mind and body has been through a lot and you're bound to feel low about it all. Just keep plodding on and it will get better. I hope your GP can help
tiny Yey for hearing the heartbeat, exciting

Erica welcome. I agree that number 2 is horrible, and I hope you never experience number 3.

Bootle I don't know if you remember how I was when I was first pg this time? I didn't want congratulations or sticky wishes, just felt an overwhelming sense of doom. People here held my hope for me, we can do the same for you. xxx

Just want to say ditto to all the above for Erica and Bootles. Erica I have that book Baking mentioned looking for a home if you want it? I think it was originally her copy actually and Tiny passed it on to me.

Shopping was a bit of a disaster. None of the yellow dresses were bump friendly, or even me-without-bump friendly if I am honest. The other three bridesmaids are stick thin. Luckily friend was lovely and says I can have a proper maternity dress even if it's a different colour to the others. So glad to have an excuse for being the fat one though felt quite jinxy talking about a future bump like that.

march, bythesea thank you.
Tanny thank you, and yes I remember you on here in the early weeks...lots of panic If I remember rightly. And look at you now!

Thanks longest. It sounds like your pregnancy is starting to become noticible. You have passed lots of milestones, and everything is on track. Go with the flow, embrace the reality of a growing bump, and look for a beautiful dress. Totally get how that's easier said than done.

But you should still try and do it!

Bootle, have you seen the high levels of complete panic coming from this quarter? It's horrible and I'm sending you massive hugs - I keep Tanny in mind that there are happy stories and this could, just could, be one of them too.
March, how frustrating, it's so hard when you know what needs to be done and the doctors won't do it.
Just, fingers crossed everything has settled down and scan doom is all ok tomorrow - it's impossible not to panic about anything isn't it? My spotting has all stopped and I think they must have dislodged something on Monday.
Erica, I've almost finished Bakings book and more than happy to pass it on when I'm done if you would like it? Thank you Baking, I think I forgot to say it had got here safe and sound and thank you very much!
Longest good luck bridesmaid shopping - I did that on Tuesday and the bride just couldn't understand that I wasn't prepared to commit to if I'll even be pregnant or not in May. I suggested that we reshop in January / February time when I'm further down the line. I felt I was jinxing myself the whole time!

Well no helpful updates from me after appointment today, was literally just blood taken for testing. Should get results in 6 weeks. So more of that thing we're all so good at....... Yup, waiting!

Ah bythesea the waiting is so tough. But it does sort of give your head a bit of a break from obsessing about cycle days and all the rest.

boozle yes the emotion of panic is all too familiar on here I know.How is yours at the moment? Have you got your heparin/clexane?

Today my old epu have agreed to scan me once they have a referral from my new gp. I still work in the area of my old epu, and they know me, and Prof Brosens used to work there so they know him too. It really helps that they are familiar with his treatment plan. So if I get to 6 weeks I'll go there rather than St. Mary's.

Lots of cramping today. But the fact that there is not any bleeding does not reassure me at all because presumably the progesterone stops or delays that. Does anyone know?

Also obsessing that if I ovulated around day 16-18 (I really am not sure, as I was only giving a half hearted attempt this month because didn't have NK cell results, but I know it was later than usual) I should have got a stronger result on the pg test. Only an obsessed person could have seen the line on the internet cheapie on cd 27 - its usually a tangible line for me at 10 dpo. Though the evap line on the other tests did look actually like a line when I looked again after the digital. Can't wait for my new stock of ic's to arrive so I can poas to my hearts content. Argh sorry for the me me me and crazy details.

boozle and longest have you considered hiring a dress nearer the time? I saw an add today for hiring mat posh frocks.

I'm in a constant state of shitting myself! Spending my life symptom spotting. It's bound to be expected, all we can do is know that TIAP.
The doctors just started me on heparin - today was my first dose and I'm also on progesterone and steroids for NK cells. Think I'm pretty lucky they're trying everything! Random question to anyone who's used the progesterone pessaries. Can you use them up either, erm, orifice? One packet of mine says one hole and another says the other... Not sure which to punt for... Is one more effective?!

Just a quicky... boozle I used it up the wrong'un, not so much because of the mess, but mostly cos it just slid out when I tried it in me fanjo!

I also do the wrong 'un, as I was worried they irritated my cervix and caused spotting.

Thank you ladies, you are a lovely bunch :) I have booked an apt for 2 weeks with the only gp I trust at my surgery. Boozles and Longest what book is it that you have? Is it a reassuring one? I had never considered a book on the subject but seems like it might help. Thank you xxx

Boozle, progesterone up the back way.. There is actually an interesting thread going about Brits and suppositories

Yup, back way too..at Tiny's suggestion a while back.

Boozle did you get NK cells tested? Am interested in how many other places are looking more closely at NK cells, as it seems to be such a bone of contention between consultants.

I might be the only one who hasn't used the wrong'un. They look like tampons so I went with the fanjo option. I think I might be a bit British in this respect at least.

Boozle. I hadn't thought of hiring. Might look into that though bride wants knee length so don't need anything too formal. If they had yellow though that might be a plan. It's not a colour I make a habit of wearing though it is nice on brunettes/black skin.

Erica the book is called miscarriages: what every woman should know or something like that. It's by prof Regan from st Mary's hospital. I hesitate to describe it as reassuring though. It's good on causes, less good on treatments. It's more as case of knowledge is power if that interests you. I took perverse comfort from the chapter about hormone reasons for miscarriages as although it didn't give any quick fixes it chimed with me as an explanation that fits with my history that I could get my head around. 'Bad luck' just didn't convince me and until I read the book I was scared there was some undiscovered and untreatable cause that I should be trying harder to unearth. Reading the book gave me the confidence to give it another shot knowing it might fail but I was doing all i could and, given it was a cause that would have been there pre-dd meant failure wasn't inevitable. So I found it helped but know others on the thread read it and found it depressing, so it's really up to you. If you want it either pm me your address or if you're ever in London we can meet for a coffee and I will hand it over.

Had to explain to dd about the baby today as gp let it slip yesterday and others may start mentioning it in front of her too. She is not 100% chuffed and has decided it should be called banana-head. She liked the idea of helping though. Really hope I don't have to explain to her that it's all gone wrong.