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TTC after recurrent miscarriage

984 replies

LisaSimpsonsbff · 10/09/2017 11:48

Hi, just wondering if anyone else was in a similar place to me and wanted to chat about it? I'm 30, TTC my first and have had three miscarriages, all early (two natural MCs at five weeks, then a MMC where a scan at 6+5 revealed development had again stopped at 5 weeks). I've had RMC tests and am just waiting on the results of that but hoping to be able to TTC again from my next period, which should come any day now. I've found throughout the whole thing (have been TTC just over a year now) that it's really helped me to chat with people in similar positions, so if anyone wants to be TTC buddies please let me know!

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LisaSimpsonsbff · 18/09/2017 16:59

Foxtrot definitely join in and post if you want/it would help - you're not derailing, and if this thread feels like a better thread for you for whatever reason (I also stopped posting on the other one) then it's the right place for you!

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LisaSimpsonsbff · 18/09/2017 16:56

Oh god, the 'at least you can get pregnant' thing. Yeah, it's not been doing me much good so far... It's one thing that sometimes annoys/upsets me about the conception boards here, quite a common comment is 'have been TTC for a year, not a whiff of a BFP', which always reads to me like it would be better if halfway through they'd had a MC. I'm sure that's not what they mean, but it bothers me a bit.

I sometimes feel like people don't get that it's taking quite a lot out of me, even if I do get a baby in the end. One of my friends - who was definitely, definitely just trying to help - googled and found something online about the hyperfertility theory and got all excited about it for me and how this was great news because it means that if I have this none of them were proper pregnancies anyway and I just have to keep trying and eventually one of them will be a 'good' one. Again, I know she meant well but it made it sound like me 'just' having 'a few more' miscarriages was no big deal.

(Incidentally, just because this has vaguely annoyed me ever since and I thought I'd share, same friend in her online searches 'for' me 'discovered' that "70% of fertilised eggs don't become babies" and told me this, pleased that she had discovered that there was nothing at all surprising about what had happened to me, with a faint air of 'so there's no need to make a fuss at all'. I had to explain that - obviously - that isn't 70% of known pregnancies, because while popular culture might be weirdly silent on miscarriage now, it would be downright bizarre if only 30% of women who see a positive test get a baby and no one ever mentioned that.)

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MogScratch · 18/09/2017 16:56

Thanks for your experiences. I will keep thinking about private tests, but might not rush into it. At the moment I don't have much time for appointments and tests so will need to wait until I can fit those in anyway. It is partly the idea of having to get pregnant (which could take a long time) and then it happen again before finding out if there is something useful I could have done before.

Anne I have a nearly 3 year old and that is helping. If I'm feeling like sulking in bed I usually need to go to the park or something keeping me busy instead. Also means I've not had much time to rest and recover.

FoxtrotSkarloey · 18/09/2017 16:42

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AnneLovesGilbert · 18/09/2017 16:38

Oh my god, EXACTLY that.

Colleague: "Sorry to hear about what happened to you Anne. At least you can pregnant. My old boss and his wife had 15 miscarriages but they got a baby in the end" Me: "Um, thanks?" Colleague: "Yeah, it was IVF which worked in the end. And about 10 years I think. And they had to remortgage their house. But a baby in the end. Cool" Me (inside my head) "What the actual fucking fuck. I know you're a nice person but how was ANY of that meant to help me?!"

Possible minor exaggeration but that was near enough it. And it's stuff in the media as much as people trying to be helpful. I don't want to hear about people who've had 5 or 6 or 12. It's been shit enough as it is thank you kindly and I don't honestly know how we'd cope if it happened again.I know people do, and many much worse things especially involving babies and children. But I'd really rather not. I can't tell you how much I get what you're saying.

I'm also aware that to people who've had one loss, which is heartbreaking anyway, I'm one of the scary ones!

LisaSimpsonsbff · 18/09/2017 16:23

Hi foxtrot and mog. I'm sorry for both your losses.

Mog I'd say that my experience so far hasn't been as quick as Anne's, but hasn't been as bad as I feared. I had my first appointment five weeks after being referred. One of the tests they did twice with a twelve week gap, so that obviously took a while. Had that test two weeks ago and just waiting now to hear when I'll have another appointment where they'll give me results and any treatment plan.

It's hard to say whether I'd recommend doing tests asap. Obviously I did go on to have a third MC, so that means I'm tempted to wish I'd had these tests after two. The thing is, though, your odds are still so good after two that there's nothing wrong. Most recurrent miscarriage is unexplained - even after three I think the odds are high that I've put myself through a long process for fairly low odds of getting any useful information out of it. We'll see, obviously.

Thanks so much for sharing that, anne - really moving, and interesting. I know what you mean about finding the idea of so many losses too difficult. I don't know whether anyone else found this, but a couple of people I told about my losses told me quite extreme stories of people they knew who had a baby now but had had eight losses over ten years, IVF, etc. - I know they were trying to help, but I found those stories difficult because I know I was supposed to focus on 'they have a baby now' but I just felt like 'there are only so many more times I can do this, and I don't know what that number is'. I know that most of you on here have had more losses than me, so I hope that doesn't sound insensitive.

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AnneLovesGilbert · 18/09/2017 16:15

Hey Foxtrot Smile

I've just been spamming it chatting about alternative therapies! Turquoise is one of the old guard and always nice to talk to. But I totally hear you.

How are you doing?

FoxtrotSkarloey · 18/09/2017 15:14

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AnneLovesGilbert · 18/09/2017 14:18

Sorry for your losses Mog, there aren't any rules here so you're very welcome to pitch in!

Do you know the area you live in is very slow on tests? I only ask because I didn't know anything about any of it and the first I knew about being referred was when we got a letter from the RMC with an appointment time. I remember the EPU mentioning it to me but didn't do anything about it and my appointment date was 7 weeks after my MMC, so incredibly quick. My consultant also works privately but the NHS RMC is fortnightly on a Wednesday afternoon. I had tests done at the first appointment, got info from tests from my surgery, got most of a treatment plan, and then was given the results 4 weeks later. It was blindingly fast.

From what I've read on here though that can be unusual, so it really depends on where you are. PM if you want to say. Round here, you'd be able to pay to see out guy so it might be worth finding our who runs your local RMC and see if they'd see you privately. A possible way to go.

Have you got any children or are you TTC your first? And do you have any family history of mc? Some places may well see you after 2 if there have been losses in your wider family.

MogScratch · 18/09/2017 11:58

Hello I'm not officially had recurrent miscarriage yet as had 2, but hoped you might be able to help with a question. I'm wondering about paying for private tests after hearing about how slow NHS ones can be and wanting to try and avoid another miscarriage. Would you recommend tests as soon as possible?

Also how do feel about taking medication to try and help? I worry there is so much guess work that if I was prescribed something and then it took longer to conceive or something went wrong again, I'd not know whether it was coincidence or messing with my cycles. Although it's obviously not working at the moment I still don't know if I want to potentially make things worse, but I don't want to do nothing. It's so hard to know what is best.

Good luck to you all.

AnneLovesGilbert · 18/09/2017 10:49

Hey keepon, I remember you too, sorry you're still in this phase but welcome to our new tiny gang Flowers

I posted this on the TTC after loss thread this morning too and it's even more relevant to us lot: www.telegraph.co.uk/women/family/coped-grief-multiple-miscarriages-can/

I hadn't heard of the charity before but looks like it's a busy place and might have some useful resources. I haven't had a good painful wallow in the shit of it all for a while. The end of the summer has been so so so busy I've been distracted. A while back I was really struggling and bought a book by a woman who'd had a couple of losses. I needed to know someone else had been in the same pain and lived to tell the tale! And then it arrived and the moment had passed so it's stayed on the shelf.

I find stories of many many losses so upsetting - warning that the piece mentions someone who's had 20 - as I can't imagine it hurting more than it has done. How the hell do you keep getting up in the morning? How terrifying much each BFP be when you know what's likely to follow?

And I also find people who've had multiple losses then had a healthy baby after are in a different place. They know that however hard it was it was worth it. I don't at all mean they weren't in the worst place beforehand, it's not a competition and the grief of multiple loss is spectacular, but they know there was eventually some light and some happiness.

I have no reason to believe we'll have a happy ending, what if we're the people making up the numbers on those who don't go on to have babies at the end of it? DH isn't there at all and hasn't ever been, he's super optimistic bless him! But I have my moments. Am I being daft? Our consultant at the RMC said my next pregnancy, always assuming, has an 85% chance of making it to a take home baby. Which made us both feel a lot better in the earlier days of TTC again. But the shine's worn off it for some reason.

Sorry for rambling. I'm feeling alright today, not miserable, just a bit philosophical!

Hope you guys are okay x

LisaSimpsonsbff · 17/09/2017 23:19

Hi keepon - I remember you too, you were so kind to me and gave me some advice when I was nervous about my first appointment with the consultant about recurrent miscarriage. I'm sorry that you're still waiting for your surgery, and sorry that you're dreading going back to trying (that's how I felt/feel about starting again too).

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keeponrunning85 · 17/09/2017 17:46

Hello ladies.

May I join? I recognise a couple of names from various other threads.

Thanks for setting up this thread lisa. I was thinking of doing a similar one myself. I somehow feel a bit too cynical and like I've been around too long for the main TTC after pregnancy loss thread.

We're not back to TTC yet but will be in the next few months and I feel like I need to start and get back into the mindset for it. I'm having surgery on the 6th October and then once we've got the all clear from that we'll be back on it. I'm kind of dreading it to be honest.

flynn80 · 17/09/2017 08:49

So sorry anne, The past couple of weeks I was a few days late, I finally thought this was it again, I am never late, 28 days, I can set a clock by it, but at this point was nearly 4 days late. no symptoms but drove myself mad googling. and then it happened and that was another month gone!

What have your dr's said to you, have they given you a timeframe to crack on and if nothing happens by then they will do something else?

This is also what were struggling with now, just to get pregnant again. I have my acupuncture tomorrow and really looking forward to it, staying positive this is going to be the game changer Smile.

Lisa glad to hear you got through the shower, totally get the milestones thing too, Sometimes I work out how many children I should have by now and it scares me, or even worse is the comparing to others which I just seem unable to not torture myself with. Prince george was born after my ds, and she's now on her 3rd and i have 1.

LisaSimpsonsbff · 16/09/2017 21:06

Oh I'm so sorry, Anne. It was ok - not great, but not nearly as bad as I feared. Feeling flat rather than sad/anxious today, which I think is an improvement of sorts! Is this cycle 8 now? You're still under 35, aren't you, so presumably GP won't be interested? I'm so sorry that now you're going through this after everything else.

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AnneLovesGilbert · 16/09/2017 20:10

How's today been lisa?

Af arrived this morning. Run out of mefanamic acid and been out all day in pain and looking like I've swallowed a beach ball. But it was a happy lovely day and DH has been so sweet. I know he's gutted. I think he's starting to freak out about how long it's taking as well. Not sure what to do.

Oh well. Onto another month.

LisaSimpsonsbff · 16/09/2017 10:42

I'm really sorry about the BFN, Anne - still holding out a bit of hope for you that AF doesn't come and it's just too early. Hope the party goes ok - totally understand the feeling of milestones like a year passing, or things that remind you of where you 'should' be. It's so hard.

Thanks so much to both you and Flynn for the support about the shower this afternoon - I suspect (and hope!) it won't be as bad as I fear. I do imagine I'm going to be asked a lot if I have children (people seem to find it astonishing that my younger brother is having a baby before me - it can't be that unusual!) so trying to practice saying no without looking sad!

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AnneLovesGilbert · 15/09/2017 23:19

flynn, you're very wise and clearly an incredibly strong brave woman. You have my admiration and my sincerest sympathy for your losses and everything you've gone through. I hope there are happier days ahead for all of us.

AnneLovesGilbert · 15/09/2017 23:17

I'll be thinking of you lisa and hope it's as okay as it can be Flowers

Still time to develop food poisoning in the morning if you can't face it and no one would blame you xxx

No af, was due today. Bfn on IC. In bed with a terrible headache and a sore throat instead of prepping for a BBQ tomorrow. Only just over a horrible cold so feeling a bit sorry for myself!

Had a wobble earlier. A year ago at this friend's birthday do I was pregnant and my biggest worry was that I'd throw up and/or people would guess before we wanted to tell them. What I'd give for that now. Instead of showing up with a squishy 3 month old baby in my arms I'm not pregnant and sodding af is failing to show. It'll probably turn up while we're there. Just my luck after this fucking year.

Look after yourself tomorrow okay. Here if you need a rant.

flynn80 · 15/09/2017 18:46

Lisa its not weak and pathetic - quite the opposite actually, wer all going through a hell of a time, I wouldnt wish this on my worst enemy, each month my life is on hold, I barely drink, I rarely go out, I cant plan anything because I dont know what will happen and when it does we have dealt with the outcomes. Its no wonder you're feeling so delicate at the moment. It would be abnormal if you felt nothing at all and powered through.

You've taken a step to get help which is to be admired. Fingers crossed the counsellors come through for you, and as for the shower tomorrow, god I feel for you so much. Ive had 3 to go to this past summer, each one left me filled with anxiety, but I went and threw myself into it, threw off the "when are you going to have another one" comments and survived. and if i'm honest they were worse when they were in my head, the actual event was fine. Not saying I wasn't glad to get home in my pjs though, have a good cry with a takeaway too - Maybe that will help you get through it plan something nice for yourself after its all over.

LisaSimpsonsbff · 15/09/2017 08:36

So sorry to hear about the insomnia, flynn. I'm not doing so well, either - work is bad at the moment, so I'm feeling very stressed about that and I just feel generally so fragile at the moment - a bit weak and pathetic. I rang my work counselling to chase them, as they said they'd offer me a regular appointment (I've already had a one-off one) after eight weeks, and it's been more than that now, and they said they should be able to get someone to talk to me next week.

Freaking out a bit about my SIL's baby showerish thing tomorrow. Have decided to bite my lip and go and get on with it, but not looking forward to it...

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flynn80 · 15/09/2017 03:49

Hi fia & something, sorry you've both found yourself here also. something - i'd give your gp a call to chase things up again, I remember getting my referral from my gp last december and when my appt came through for feb I was gutted it would take so long. you really want that as soon as possible.

anne yes to the clots as big as my hand! so glad they've settled down for you, im going to mention them this week at my next appt, fingers crossed they havent lost my bloods again! Your consultant seems so much more proactive than mine, my last appt was in June a week after i'd miscarried, as nice as she was she seemed too interested in trying to get me to sign up to a rm trial using progesterone suppositories.

Amongst other things I've now developed Insomnia, just what I need with a full day of work tomorrow! I have booked my acupuncture for next week, sounds sad but really looking forward to next week now, accupuncture & the clinic to get few more answers.

LisaSimpsonsbff · 14/09/2017 22:11

Fingers so very crossed for you, Anne - you so deserve for this one to be your time.

It would be progesterone until 12 weeks. No idea if NHS RMC will prescribe something too - waiting to hear from them, which is frustrating as I know they have all the results and I want them to give them to me!

I also wrote a big list of questions before my appointment with RMC, and made sure I had all the dates of my MCs to hand, etc. Would definitely recommend that - they asked me a lot of questions quite quickly, so I can imagine it would all have been a bit confusing if I hadn't prepared a bit.

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AnneLovesGilbert · 14/09/2017 19:13

You've both been through the ringer @somethingfromnothing and @Fia256. Hope your appointments come through quickly.

Worth chasing up if you've waited longer for it than you'd expected to something? Do you have someone you can contact?

I found writing a massive list before our first appointment really helped. I was worried about being rushed and forgetting what to ask. Dates of cycles, past surgeries, dates of mcs, questions about tests etc. My consultant has the best PA in the world and she's been really great as well. As my last mc was after I was under the clinic it was she who gave me my shit HCG result and told me I was losing another baby, she was so kind, listened to me bawl and told me she really understood as she'd her own losses. A bit of compassion makes such a difference.

I'm happy to waffle on at boring length about what the clinic was like if it's of any use to anyone heading that way.

AnneLovesGilbert · 14/09/2017 19:07

Af due tomorrow.... Don't really feel like it's coming, which I've definitely had one of the times I was pregnant. Got a BFN yesterday, but I've never had a BFP before 13 or 14 DPO and my luteal phase is 13 days. Temp still high and cervix is super high and soft. Will see what tomorrow brings.

My super sensitive nose which I've had every cycle since last mc made a brief appearance last week but has mostly been missing, though I have had a cold! Massive sore boobs but otherwise feel pretty normal. I'm incredibly hormonal most of the time with one thing or another so it's a bit weird to feel so normal. Either Af is being super sneaky or something's going on....

How are you all?

What you say makes complete sense Lisa, we've spent soooo long chatting through our options for future pregnancies (always assuming!) not wanting to fill me with chemical crap when I have no diagnosis, but absolutely not willing to waste time going it again and refusing the help and expert advice on offer.

What have you been told they'll give you when you're pregnant again? Will you keep on the progesterone e.g. take it from 7dpo and carry on post bfp? If so, how long for?

I've been told progesterone from first sign of spotting post bfp - though like you I've never had any in the past - till 12 weeks, aspirin until bfp swapping to clean jabs every day till full term. He said on the clexane I should then have a lower than normal risk pregnant and can go midwife led if everything else is okay, should have a natural birth, can breastfeed etc. After a pregnancy of needles and who knows what other drugs etc I'll be keen to maintain the chance of as much normality as possible. Obviously everyone just travels hopefully in pregnancy but I hate the idea of loads of intervention and medicalisation if it's not necessary.

Having said all that, I'd like a bloody baby after all these bloody pregnancies and the crap of the last year, so I'll do what I have to and take what I get! Waahhhh, where the hell is my baby!

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