Recurrent Miscarriage Support thread 14 - tests, treatment, trying again

[Justonemoretime]

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 :)

My understanding from what I've read in the last few days as I am waiting for genetic testing results, is that they will either come back saying that there was something chromosomally wrong with the embryo and the pregnancy was always going to fail, or the embryo was normal in which case something else on the maternal side caused the pregnancy to fail for e.g. hormone levels.

I'll never know whether #1 or #2 had genetic issues but I suspect not. I think mine is an implantation issue to do with not being able to start to build a placenta. Something to do with the failure of the trophoblast not implanting properly. I think this because the pattern was identical; loss at 7 wks after HB at 6. Even when I was getting the 'bad luck' bullshit, it felt like too much of a coincidence.

Never thought of mine as "bad luck", always thought there was a cause. I never had any of mine tested, but I suspect that even if there were some chromosome abnormalities, they wouldn't have been the cause of the MCs, as they were all too similar to be a series of random events.

Ok longest that makes more sense. I was warned by MW this time that if she couldn't find the HB that would not get me a scan, whereas later on it would automatically trigger one if HB was not found.

I never did either and I made a point of educating myself in as much as I could about my cycles and m/c's so I had a gut feeling that mine were to do with my hormone levels. I have to say that this time I'm not so sure that it was my hormone levels though I didn't have them tested during the pregnancy. I do feel this time that it might have been a chromosomal issue. My scan this time looked nothing like my scan last time, it looked more like a blob that hadn't developed properly so I am probably expecting that there may have been chromosomal issues. For what it's worth, I would take whatever steps you can privately to have it investigated after 2 m/c's if you can afford to as I don't believe that enough weight is given to the emotional toll on women.

Put it this way, I have spent at least £500 on counselling and cognitive hypnotherapy over the years. That would have paid for #1 genetic testing, I expect. Then I could possibly have saved #2, or at least had a reasonable chance of finding some kind of treatment plan rather than just letting the same thing happen again.

I also believe, certainly in Ireland, but sounds like it's the same in the UK, that not enough information is given to women about the private options that are available to them. Here it seems to be a case of 3 m/c's or a year of ttc with no results and bam, off down the IVF route. There is a huge wealth of information available on the Internet but it is all on forums like this with women who have no medical background informing other women of what the issues are likely to be and what different options are available. That in itself is wrong. We are becoming the experts. I am so lucky to have the child that I do, but in no uncertain terms, I wouldn't have her if it wasn't for the Internet.

So I thought I was coping well with the MCs and then every so often I have a day like today when a throw away comment from OH sets me off. The comment? About being glad that we didn't need to buggy with DH today in town as it was busy. Completely harmless but then made me think we should have had a pram with us if the first MC hadn't happened.

Darn It, was having a great weekend until that moment. Hope everyone else has had a better weekend x

Wow. I can really feel the emotion leaping off the screen.
What would I do without this wonderful group of women who feel what I feel?

(((Girlie))) so hard when you are blind sided by something like that.

Thanks Bakingtins, so blooming frustrating when it happens x

girlie so sorry, it's awful when things suddenly hit you like that .

scarlet I can't speak for the UK as a whole because it is a massive postcode lottery, with some women not entitled to IVF at all. But I'm now 3 years ttc and we're not at IVF yet, despite going to the gp after 1 year strictly speaking it was 11 months but the gp didnt need to know that You certainly don't get thrown into IVF after a year of TTC (or 3 mc from what I've heard), by the time they've done the tests you'll be at least 18 months in, and most places require two years ttc before you are eligible to be referred for IVF. I was put on 6 months of clomid, then IUI, and only if that fails to work a third time will we go for IVF. If we hadn't had two mc during that time we might have been at the IVF stage by now though. In my case after a lot of arguing they referred me for investigations after two mc on the basis that I can't get pg naturally so didn't want to waste my remaining chances if there was an undiagnosed reason for the mc.

just There's no logic to how funds are spent, and I think more people who could afford it would go private if they were given clear options. In my case I couldn't understand why the nhs would be happy to provide me with further fertility treatment before ruling out anything that could cause another mc. If I had another successful round of iui then a 3rd mc, they'd be paying for the care they provided for the mc, probably more counselling, 3 mc would mean referral to the rmc so they'd be funding all the tests anyway, and then the massive costs of the IVF. All that cost could potentially be saved if they could identify and treat a potential problem before the next round of iui (which is why I felt quite smug as well as relieved when they did find a problem).

longest do you think it's ages for all women between 12 and 20 weeks, or just those who have experience of things going wrong? I have friends who sailed through pregnancy from bfp through to birth, with never seemingly a thought that anything could go wrong, and excitedly looking forward to each scan rather than any worry crossing their mind. I find myself bitterly of them.

baking so much of what they say feels like fobbing off. I've never experienced the medical profession basically saying 'we don't know', 'maybe', 'perhaps, but maybe not', 'it's empirical' etc etc all the time. It can get maddening!

It's taken me ages to write that so I'm probably x posting with lots of people and looking like I'm ignoring them. This thread moves so quickly!!

Group hug!

Me2. A cause on the maternal side doesn't necessarily mean it will happen every time though. Hormones vary from cycle to cycle and even clotting, thyroid etc only make mc more likely, not inevitable. But if there is a cause you're better off identifying it as most are treatable. But in 50% of cases no cause is found but your chances of a successful pregnancy next time even then is around 70% with decent antenatal care (just being looked after improves your odds!)

Totally agree scarlet. No one should be pimping private treatments on to vulnerable women in hospital but surely there's a better way to find out what is available?

I had my dd without any treatment whatsoever other than early scans at the RMC...

So the following mc hit me hard as I thought my body had learnt what to do...

This time Coventry protocol helped...

I also had a shit day yesterday. My parents called at 9am to say my gran died in the night. I was expecting it, she was 96, but it is still hard... Then in the evening dd who was just snotty got a temperature and has a bad cold... Sigh

However it happens, and however much you prepare, it's still a shock. And it's OK to know she was ready to go and still to be immensely sad and miss her...

Big love, and am sure your DDs will both remind you of her sometimes.

xxx

Morning ladies, took a weekend off from the threads as I was going a little nutty :) Will read back through later today.

In the meantime, 8w scan in an hour (should be 7.6 today) so wish me luck. Absolutely sh*tting myself, this is where it's all gone wrong before.

Good luck charlie
Fingers crossed for you!

Thanks Tanny... I was actually commenting with DH yesterday it is a pity she had such crap names so we can't use them for newbie!

Crossing fingers for you Charlie, totally understandable scanxiety, we're all rooting for you! x

Tiny my grandma's name is picked if we have a girl. Luckily its a name I really like, although the kids aren't so keen...

So sorry tiny

Good luck charlie

So sorry about your gran tiny. Death is really odd to be dealing with when you have a new life inside you. I thoroughly recommend bunking off work.
charlie massive good lucK to you today. I understand the urge to run away from the boards for a while. Just I think you are up this well as well?

I second the call for better info to be made available on the choices for women like us. I had no clear pattern to my losses, but I got pregnant first/second attempt all four times, all in my late 30. Also had pregnancy with t21 and other substantial issues. I suspect I am hyper fertile and embryos that should not have implanted did. I looked into the research, all in vitro studies, so although the theory makes sense, not a lot to back it up, and nothing can be done anyways (unless Coventry helps with this then I stand corrected) except keep trying for a healthy one.
I had never heard of nhs self funded until I found these pages, and my consultant never offered anything above bog standard. Given my age not great.

Good luck charlie rooting for you.

Tiny sorry about your Gran. It doesn't matter how prepared you are, it's still sad when someone you love dies.

x posting from preg after mc thread:
All good! Baby measuring 8.1, 2 days ahead with nice strong hb and everything else looking good! Relief!

Fantastic charlie so thrilled with all the good scans on the thread recently.

Yay Charlie! happy for you!

Brilliant news!