Recurrent Miscarriage Support - tests, treatment, trying again - thread 11

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

Finnsmum Hello and so sorry to hear another sad tale. You have been through a lot in a few short months. I know it's not easy to take a break from ttc - it's not even really a break is it, as you're still thinking about it constantly, but I agree with the others that if a cause is found you will want to be on the right drugs before trying again - otherwise you could set yourself back further and put yourself through more pain.

I am really quite scared about trying again with no treatment. I keep thinking of that definition of insanity - doing the same thing over and over and expecting a different result. But then I think well, you can throw a dice several times and get different results, so maybe it's just a dumb cliche. I am terrified of another miscarriage but I am also terrified of being stuck waiting, unable to even try. Is a horrible place to be in either way really -the only real break I can imagine is actually having a baby, which would be a break from ttc, mc, thinking about it, being jealous, the whole package. Unfortunately to get that break I need to risk more heartache, and I am not really ready for that. Hopefully by the time ov comes round (4 weeks from now with my annoying cycle) I'll be feeling braver.

Does anyone have any views on progesterone? Mr Rai wouldn't prescribe it for me until the trial results are published, as he said that it may have adverse effects, they just don't know. But I can't help but think he must have an idea it is helpful or he wouldn't have commissioned the trial and a few months ago he'd have been asking me to participate in it, without any ethical concerns. I am desperate to find something I can do that's different to just hoping it works out OK this time!

Enlightened - St Mary's do a few extra tests is all, so I thought that, being in London anyway, it was worth trying to get referred straight there and cut out the middle man but I think I only managed to persuade my GP to refer me there because I was paying for the initial consultation and tests privately (I had a limited form of insurance that paid for some tests but I am in the NHS system now) as she wanted to route me via the Whittington to start with to save costs. I am glad I have had all the tests at once as if the Whittington ones had come back negative and then I faced a wait for more tests at St Mary's I would be in limbo for longer but in actual fact the waiting lists haven't been as long as I feared (one month from referral to get my NHS appointment at St Mary's) so if your appointment for C&W comes through and you are happy I'd say just stick with them.

lurker from what I read on the MA site, the PROMISE trial was only for progesterone from 6 weeks. maybe not there, but somewhere else...

www.miscarriageassociation.org.uk/information/causes-tests-and-treatment/research/

ATM I am on it from CD21 so not sure if this is working or not... it's the first time I am trying... it seems each doctor has a different theory... cd21, BFP, 6 weeks...

fuck knows! it's so difficult!

Tiny - Thanks. On what basis were you prescribed it, do you know?

i think it's part of the Coventry protocol... I should really have been taking notes when I was talking to prof Brosens...

Can anyone remember? tanny? baking?

Yes,part of the Coventry protocol to supplement progesterone from cd21. You test day 28 and if pregnant continue until 12 weeks, if bfn stop it until the next cycle. it's supposed to support decidualisation of the endometrium (preparation of the womb lining to support implantation) they think this may hinder some women conceiving so you try for 3 cycles and stop if you haven't conceived in that time. The only other adverse effect I've heard about is taking it may 'prop up' an ailing pregnancy and delay a MC. It has been proved to improve outcomes for IVF and is a standard part of the protocol in that situation. Still awaiting the results of the PROMISE trial, but in the meantime I'd take it if offered. I took it from BFP for MC4 and from CD21 in my successful pregnancy.

longest I could have written your comments about ttc without treatment being scarey - this is exactly where I am at the moment. For us, it really seems just a case of having to try as long until a 'good one' sticks around... I sometimes ask myself 'What the hell am I doing?!', and I think that a lot of my friends and family think the same.
But I have realised one thing - I am not done with ttc. Just coming to that conclusion has been quite an eye-opener and also a relief - I can't say why, I know it's crazy, and I'm fully aware that there is a high possibility for more heartbreak and sadness - but I am not done yet, simple as that.
My counselling has already made an impact - admitting this to myself has really helped me to calm down a bit and get some perspective. I do not have any scientific facts or figures as to why, that's just what it is, and I don't really need to explain this to anyone (not even myself).

Progesterone - I have not done a lot of reading about it, but I'm starting to believe that this is the 'go-to' medication for recurring mcs, even though quite a few doctors do not seem too convinced that it will make a big difference. I had my progesterone checked, and my levels were good, and they still prescribed it. Maybe almost like a placebo, to give people something to hang on to? The consultant we saw after our last mc seemed to think that it wouldn't do any harm, but did not sound too convinced that it has an actual positive effect. I reckon it's part a 'just in case' thing... You get it, just in case your body struggles producing enough progesterone on its own.

Thanks all. The PROMISE trial is due to publish in October and on my previous record I will still be TTC by then so maybe will just have to wait and see.

Cloud I am glad you are feeling some new clarity at least. I am definitely not done ttc either, I know that. I don't think I've even got a deadline in my head - I feel like I need to keep going till I get a sticky bean as nothing else is going to give me any sort of resolution a I theoretically have plenty of fertile years left. But ttc is one thing - going through endless mcs is quite another. I am not sure how many more of those I should realistically put myself through, but I think I am just going to have to adopt a different frame of mind - a BFP is only another step on the ttc road and I will try not to get too hopeful until I've at least passed the fhb barrier. Easier said than done though- especially if ttc takes a while each time!

Thanks Lurker, I'm skim reading at the moment due to keeping one eye on the dog and the chicken sat on the side waiting to go into the oven, so apologies if I'm repeating what the other ladies have said but I had to bed my GP for progesterone, he hadn't heard of it being issued when TTC after multiple miscarriages before and he had to ring the consultant gynae before he'd give it to me. I believe you are to start taking it hurt after OV until 14 days after your cycle and then if BFP keep taking it and if BFN stop. I didn't really get chance to use it this time around but I know it's used widely in America, they test progesterone levels as standard over there I think. There's no conclusive proof it does anything but it's a definitely a case of 'might help, can't hurt'. There's a lot of success stories out there from women who have used it so who knows?

It's going to be hard to step off the TTC wagon, especially because I know my cycle well and will be so tempted to DTD mid cycle, but you're all right. I can't do this again. I don't know what I'm going to do if everything comes back as normal, how do you find the courage and strength to keep trying? X

Thanks Finn. I will ask about progesterone again when I go back to St Mary's for my NHS appointment then - though bedding my GP will be my next step .

One step at a time - you might find a cause. I suppose my "courage" is going to come from a form of denial that it is going to happen again. But obviously that means further to fall if it does and that does scare me a bit. This time has been bad enough.

It's so hard isn't it. I suppose I got on the ttc rollercoaster, and however hard it might be I'm going to stay on until I get my baby or I am told I can't have more children. I do take comfort in the fact that so many women who suffer multiple losses go on to have a healthy pregnancy.

I just can't seem to get much further than the 5 week mark. My first miscarriage this year was by far the hardest. I'd had some bleeding and was referred to my local EPU. A scan showed a heartbeat but within an hour of returning home I was bleeding heavily and a scan four days later confirmed if lost everything. It almost seemed too cruel.

Definitely push for progesterone if you can, it can't do any harm xx

Although it's worth noting that progesterone can give you false pregnancy symptoms such as sore boobs, nausea etc. My doctor warned me not to get my hopes up too much if I noticed any of this in the 2ww xx

Oh, emotions emotions! Was watching Relocation Relocation this arvo and was in floods of tears twice - first when they successfully bought a house then (unsurprisingly) when the couple profiled had a miscarriage partway through the purchasing process. Honestly, I know I'm more attuned to baby/pregnany/MC related stuff but it does seem to be EVERYWHERE.
I think I'm going to go back to work part time next week, I'm just not ready yet, clearly. Quite a lot of pain today, worst since the ERPC on Monday. Rang the hospital and they seemed to think it's normal - I walked about 30mins in the park and spent the day pottering round the kitchen making a huge batch of lasagne so think I just overdid it.

enlightened I'm another Londoner (or at least I live in London) hello!

finnsmum hello - sorry you're here, sounds like the advice from the more knowledgeable ladies is to wait - so so hard to do though. I've had 2 MCs since Feb and I'm trying to be positive that I'm getting pregnant so quickly each time. I know others aren't so lucky (even though the pregnancies are obviously not sticking for one reason or another). I'm going to TTC again as soon as I've had my next AF but I have to have another MC before I get the full NHS treatment.

So sorry to hear that Charlie. It is a mixed blessing being able to get pregnant easily isn't it? We don't seem to struggle in that department, we just can't keep them .

Truly hoping your next pregnancy results in a beautiful baby for you. Remember only 1% of women have 3 or more mc in a row so the odds are in favour x

Oi you lot! No moaning about getting pregnant easily please, it took me five years to get my first BFP .

Glad you've joined the thread Finns and hope you're feeling ok all things considered. I can see you're already getting wise advice. longest hope you're feeling a little brighter today too.

Sorry the thread has moved so quick I can't keep up with you all (on my phone) but I'm waving hello.

X

Bumped into lovely (but pregnant) friend at lunchtime as she works in my building and found myself physically shaking after telling her about how yesterday's appointment went. Guess I am not feeling quite as well as I thought though that awful heavy feeling of grief in my heart has not returned yet, thank goodness. Dd has perked up and cold is lifting too. Phew.

Hyperfertility can be a bad thing for us. Especially as all my other tests were normal...
Just means we have an unfussy womb that let's any old thing implant even when normally it shouldn't...

This is me paraphrasing Prof B

Sorry catlover - I actually wasn't going to write it, but I figured it takes all sorts. Sometimes I remind myself that it's a bit of a continuum...

Girls who have a DC and have had one or more MCs are jealous of those who've had no MC
Girls who have had one or more MCs but no DC, who get upduffed reasonably easily are jealous of those with DC [me!]
Girls who have had one or more MCs but no DC, who have trouble getting BFPs at all are jealous of those who get pregnant easily
Girls who can't seem to get pregnant at all are jealous of those who can (even with the MCs)
Girls who can't convince their DP to TTC are jealous of those trying
Girls who don't have a DP are jealous of those with a DP...

[I mean envious more than jealous. Not super negative, just the "why me?" thing we all think from time to time...]

So I figure I'm pretty high up so am doing pretty well for myself

Did that make sense? It's just how I try to remind myself to be thankful for what I've got... pretty good life overall, fantastic DH who I adore, etc etc
Sometimes keeping positive can be difficult and it's easy to beat yourself up when you're in a dark place, but sometimes it works!

Hyperfertility obviously causes a lot of pain as it causes rmc, and none of us would wish that on anyone. But I think what cat is saying is fair. A difficulty conceiving coupled with rmc is very gruelling as you have to find the strength to keep hoping for something that in reality you know is only the first step on a road that may lead nowhere. And I don't even have proper trouble ttc - am just impatient. Takes me 5-6 months.

tinytear thanks for "unfussy womb" just laughed out loud at the idea!

Then again Charlie, you're right. I have a lot to be thankful for too. And this is a safe space to moan about our troubles whatever they may be. Let's not get into competitive misery! Xx

I am so grateful to everyone here for being so welcoming even though I'm a repeat offender, rather than a medically-defined sufferer of recurrent MC. It's been so so difficult to cope with and I haven't found any other threads, either on MN or other sites, as lovely and welcoming. I have almost no one to talk to in real life, esp as my DH is away on a very important work trip several timezones away so I don't feel like I can call him every time I have a wobble. It's so reassuring to be able to talk & listen to you ladies. xx

I completely see your point cat lover and lurker, I shouldn't moan about conceiving easily when some lovely ladies have to deal with recurrent mc as well as difficulty conceiving.

I have read about hyper fertility before, it's certainly an interesting concept. My MIL pointed out that I probably just can't carry girls. Another interesting theory I guess, although I didn't find it at all helpful when she first mentioned it!

Sorry silly jealous post from me! I know any mc is very hard, after infertility or not. Let's just hope we all get luckier soon and there are no more mcs among us now.

Really admire those of you who will keep trying. It will be 6 years of trying for us in May 2015. That will coincide with my 35th birthday. That's when I think we might give up and adopt.

XxX

I'm off to read this whole thread now so I can familiarise myself with everyone's journey so far. Thank you for welcoming me to this thread x