Recurrent Miscarriage Support Thread 15 - tests, treatment and 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 :)

Welcoming monten. Sorry for your losses and glad you've found yourself on our lovely feed, we're all here to listen and hand hold

I think some of the ladies have already covered but when you're feeling a little better it may be worth asking your GP for some blood tests. The NHS policy is to only test after 3 but they did do some investigations on me after 2 (although I have fertility issues too).

Hugs xxx

Mama one nasty thought - a benefit of seeing the EPU or at least a GP would be that this mc is recorded. If, god forbid, you do have a third, it would be awful if this one weren't to be counted for the purposes of getting a referral.

Also it is worth having a scan in a week or so to check it has properly completed.

Hugs.

Hi all, flying in and out as trying to pile though a million tons of work before holiday tomorrow, I shall be succinct.....
Hugs to those suffering current or recent mcs, a shit, horrible and lonely place to be.
Hugs for those with AF arriving or nearly arriving-honestly, each month a bit more disappointing than the last?!
Hugs to those pregnant and anxious/knackered - remember TIAP!
tanny and mama extra hugs for you - life is hard

Basically hugs is the theme of my message. I am loving and leaving you for a week to throw myself down some mountains - a good distraction from the first 2ww for a while! 'See' you all soon

Have been lurking over the last few days, am new to this thread and like everyone else I wish I wasn't writing this. After having 2 healthy sons, I had a spontaneous MC Sept 2013. Then had a MMC detected on an early scan in March 2014 which was followed with an ERPC. Decided to halt ttc until had moved house and stress would then be less. Fell pregnant circa 24-26th Dec, got the BFP, had an early scan booked for next week, but started bleeding 4.30 pm on Tuesday this week, and still light bleeding today, so am pretty sure by the time they scan me there will be nothing left. But am slightly confused by what is going on inside my body as not had any clots, and nothing except blood that I have noticed anyhow, nothing that could be identified as a bunch of cells, fetal pole etc. and the bleeding isn't even as heavy as a normal period never mind as heavy as the last spontaneous MC I had. The EPAU said there is nothing anyone can do this week, and to go to the early scan next week as per original plans, and they will either see a baby, or they won't, and in which case they will be able to check if it's a complete miscarriage or not. Just wondering, for anyone who has had a miscarriage at 5 weeks (3 weeks gestation) what was your bleeding like? Also does anyone know if they would pick up on the ultrasound scans any cysts? During a chat with a midwife, she seemed to think it's highly likely I have PCOS and this is news to me but she seemed to back this up with strong links between me and my health and history. Am now wondering is she right, and could I be full of cysts which are affecting new pregnancies? Or do cysts not do that? Anyone able to enlighten me as to any potential relevance to this re conceiving/ carrying to term. We have no problem falling pregnant, this was 5th pregnancy, all 5 happened first month of trying, but only 2 live children to show for it and am desperate to add to our family and I'm now 38 so really don't have time to get stuck in long queues for referrals etc. have long cycles, although they had started to become less irregular and had started to average 39-44 days, so that reduces how many attempts per year anyhow if I have miscarried this one like I believe. Just not sure as to what investigations I should be wanting them to do, as this will be our third, plus am going through Worcester hospital and have heard they are quite quick at trying to help people. Anyone got any experience of them? Sorry for all the me me me, am frantically typing this before getting my youngest up from his nap and am out of time, but will try to be less me me me in future posts! Ps I also have a useless DH (think someone said similar somewhere back on this thread), he shows no emotion at all re the mc's and it just feels like I am going through this on my own. He loves our children but he had no excitement for any of my BFP's and no signs of upset when se lost them. Maybe it's because we've never had any issue getting pregnant and it was so matter of fact, do the deed, get the BFP, have the baby, but my god I wish I could understand how he can be so blank over it all, I have been crying my eyes out and just no emotion from him at any stage, don't get me wrong he is a lovely bloke, works hard, loves us all, does pretty much anything I ask of him, and has made a big sacrifice recently for the good of me and the boys, but he just doesn't seem at all bothered, not sure if distant or aloof are the right words, but just can't communicate and it hurts, he has bought things I need, rubbed my back, got me hot water bottles, but just emotionally is not there. Does anyone get what I mean?

Hi loopy. So sorry about your losses and that you think it might be happening again. Don't give up hope just yet. Many of the ladies on here have had early bleeding and continued on to healthy pregnancies, but it's impossible to know without the scan. Frustrating that they aren't scanning you this week but at 5 weeks I suppose they might not yet see the heartbeat even if everything was fine, which could be even more worrying, and perhaps unnecessarily. The waiting is so hard when you are thinking the worst. I really hope you are wrong (in the nicest possible way! )

this might not be very easy to think about at the moment, but if the worst does happen, you might want to consider catching the embryo so it can be tested. Speak to your epu about this and they might give you a sterile pot. It's absolutely awful to have to think about this but it may help you work out what's going on.

Do you know what made the mw think you have pcos? I know there are certain symptoms like irregular periods, weight issues and excess hair, but I'm not sure how she can diagnose it just from your mc history. I would definitely push for testing to see if this is the case. There are others that have much more knowledge of this condition than me, but it was my understanding that it affects fertility and ovulation, which you said isn't your problem.

So I Think You need to wait until your scan next week before you worry about the next stages, as I don't want to jump the gun when you don't know what the situation is, but if you need us then the ladies here can give you lots of information on tests and treatments.

Re your dh. Mine is exactly the same (it's probably my posts you were reading earlier). He's lovely to me and wants me to feel better, but just doesn't get it. It's so hard and very lonely. Hugs to you x

Tanny so so sorry about your cat. I remember well the sad ending for your other cat a while back too. You are really having a rough time, sending you big hugs, and strength, I do hope you are being looked after xx

barking I really don't know about the aspirin I'm afraid. Is your consultant advising it for you clotting disorder, or is he clexane taking care of that and the aspirin is an 'extra'? cat took it I think but dont know when she started. Will you be able to discuss with consultant next week at scan? Its such a minefield.

mama so sorry to hear you are bleeding. Agree with all that has been said already, and whilst I can absolutely understand that you'd rather not go to EPU, longest does make a really good point and it may just be worth getting checked out, and confirming what is going on.

loopy hang on a mo..

Thank you all for your kind words. This is my second miscarriage and I am 40 so don't hold out much hope for a future baby now. We want to try again but I don't know if I could take the heartbreak again.

I am going to see the doc at some point and will probably have a scan to see if I need a procedure.

Tanny - I am sorry for your loss.

march I have had weight issues all my life, it was the chat when she worked out my bmi about healthy diets when I just snapped a tad and said the only way I have ever been able to lose weight is to reduce my calorie intake to 500-700 per day and that I refuse to eat so little when ttc/pregnant/breastfeeding and gave her examples of my normal days meals and that my cycles are long and always have been, when I was younger AF's were often 8 weeks ish apart, lately they had almost settled into a 39-44 day cycle. Midwife also said they are now starting to believe from studying PCOS more that it doesn't always affect the ability to fall pregnant but that it can cause problems, but I hadn't pushed her to elaborate and this was all pre bleeding. Re catching an embryo, I honestly don't know if it has gone or not, as a lot of blood has gone down the toilet and when I have showered, not noticed anything but that's not to say it hasn't gone by now. Just can't believe anything would be left as have bled since Tuesday now :(

tanny sorry re your cat! I've lost mine in the past in road accidents and it's utterly crap how some people drive.

Yes, bootles, the aspirin combined with the heparin (dalteparin) is for the blood clotting. The (2nd) consultant has already said to take it, I just couldn't remember if I was supposed to have started already!! But now I'm thinking about it clearly I remember being concerned that I wasn't doing anything 'extra' before bfp, so that fits with starting if I get a bfp. I'll be on progesterone as soon as I've had the IUI and I'll be in the clinic for scans and blood tests before then so plenty of opportunities to ask more questions .

Sorry you've got reason to be here loopy. It might still all be ok though. I don't think men are hit the same as it's not happening to their body, so they're a step away. It's like the same way your sibling or parent might react to the news - it's sad, but it's not affecting their body and being a constant physical reminder.

(As much as it would be nice to kid myself that it's all ok despite the bleeding, or that I had twins and that it's all ok and this is just one going and there will still be one there when we have the scan, I just think they will be looking at an empty space on the scan next week)

But to add to the emotional wreck that I am, I had the letter arrive today telling me the details for the 12 week scan too, so if the early one next week confirms my fears I now have a midwife appointment to cancel plus another scan to cancel, as it's in a different hospital to the early one I don't think they will link up

Welcome loopy. I am so sorry for what you have been through and are going through. In answer to your question I have had an mc at a very early stage (circa 4 weeks) and there were no clots - just blood. But yes, bleeding can happen and still be ok so I will hold out hope for you.

As for PCOS, I have this too and was only diagnosed after the Mcs. You can only see the cysts on a scan at certain times in your cycle so it isn't always picked up. The cysts don't stop you getting pregnant but are a symptom of hormone imbalances which can themselves prevent ovulation or cause difficulties with implantation - which in turn can cause both difficulties conceiving or miscarriage, as I explained to Monten earlier today. Pcos is also associated with insulin and clotting problems whichever themselves cause miscarriage though I have neither of these symptoms.

The bad news is that there is no quick fix for the hormones. You can take progesterone supplements but these may not offer a complete solution, esp if only taken after bfp as often prescribed. I tried agnus castus which may have worked for me, though I will never know for sure. Metformin is also sometimes prescribed although my consultant wouldn't give it to me because my insulin levels were ok. Losing weight can also help though my cycles seem to stay long whatever weight I am.

The good news is that there is only a correlation and not a direct link between pcos and miscarriage so it's certainly not a cause that will totally prevent you from having a healthy pregnancy if you're ovulating. You know this from your own dcs. I have a dd too and realising it was something I always had and didn't stop me having dd gave me the courage to try again, knowing I was doing all I could. I am now 21 weeks pregnant and things are looking good. Fingers crossed for you too.

On to dhs. My dh admits that pregnancies don't really sink in for him till later so he is inevitably less upset at their loss. He did get a bit upset after mc3 but more about the barrier it seemed to be between us and having dc2, not because of a lost baby. I do understand his point of view.but it doesn't help me feel less alone. That's why this thread has been so great.

Sorry for epic post. Your story hit a number of chords for me.

Quick hello to the newbies & sorry for your losses :( it's really pants but you've joined a wonderful group of ladies that will help with you every step of the way.

So sorry Tanny. Hope you're tucked up and getting warm hugs and gentle kicks from bump to get you through this time x

loopy I was working my way through the thread but had to do something - I didn't want you to think I wasn't responding.

I think the others have said it all really. IF this is a 3rd mc, then it's time to pursue a referral to a specialist, if that is the path you are thinking of going down. If the bleeding does start up again, you could try thinking about retrieving any products, but as you say it doesn't sound like that will be very easy. I have never had a 5 week loss so can't advise there I'm afraid (later ones). Men are different with this stuff. They just are. To generalise massively (I'm sure not all men are like this, but it's my experience) they don't understand, they don't feel like we do about it, and they don't know what to do about it. Try to keep talking to each other about it. I am so sorry for your losses, and that you are bleeding now. It could still be ok, but understand that you aren't feeling very positive right now. Try to look after you x

barking sorry, I'm not with it, your question was when to take the aspirin, not whether to take it. Sounds like from bfp is the conclusion? I've never been prescribed it so unhelpfully can't comment. So when do you actually have the iui? How are you feeling about it?

Thanks so much ladies, so much good advice as ever. I will look into Prof Regan's book. I'm waiting on my blood test results from the rmc clinic - that's a good shout to try that route for more advice too.

Thanks for all your advice longest. The thing that bothers me is my cycles are definitely different to before. They used to be 35 days like clock work. Now they're averaging 28. In a way it's good, as it comes find quicker, but the fact it's different is in itself worrying. Aargh - hate all this.

Welcome loopy. I'm really sorry, I have no real advice as I haven't ever had a spontaneous miscarriage so I don't know much about bleeding. I do know that plenty women experience bleeding in perfectly healthy pregancies. But I understand how hard it is to keep positive once you've had a mc. As for Dh - it's such a difficult time. Mine is sympathetic but just does not experience it in the same way. Also with ttc - I'm devastated af has arrived and he seems totally unbothered. It's tough - just try and go easy on each other. Sorry you're gping through this. The waiting is awful. When is your scan?

monten sorry you are feeling desperate. This thread is so hard to keep up with, I always miss things out I'm afraid. I know the desperate feeling well. Its a horrible horrible feeling. You will get a bfp again, and now you are into a new cycle. Doesn't make it any easier I know.

Don't worry bootles it moves fast doesn't it! I hope you're doing okay. Are you waiting on the karyotype results?

Monten big big hugs. I know that feeling and I remember how distressed I was whenever AF turned up.

And you were wonderful and you said to me "please don't be upset, remember it's a fresh start, a chance to try again"
All I can do is offer huge hugs and tell you it's a fresh start.

Thinking of you - I know it's shit and I know I will feel exactly the same when I get my AF.

I need to re-read Prof Regans book. I bought it after mc 2 and I didn't find it that helpful. But actually after 3 it might be more relevant...

bootles IUI started this week, had a scan on Tuesday and started injecting Tuesday night. Back in for a scan on Thursday to see if I have the right number (1, max 2) and size of follicles.

monten sorry AF got you. I don't actually get upset at it arriving as much as I used to in the first two years of ttc as I've pretty much given up on the possibility of getting pg naturally, but when I was 4 days late this cycle I really got my hopes up . It won't arrive for me this cycle unless I get a bfn after the iui and stop the progesterone. This cycle I will be devastated if I don't get a bfp as it's one more chance gone and only two left between having a baby and never giving birth to my own child. Quite scary really. I'll know by summer if the dream is over.

Wow, that was very me, me, me and depressing. This is what you get for not being able to sleep and thinking about success rates of IUI too much... (13%, not great..) and then the chances of holding on to it if we even get as far as a bfp.

Anyway, thinking positive thoughts now!! .
So many happy stories on here among the heartache, it is truely inspiring! .

Barking, good luck for your treatment. I didn't know you had a diagnosed clotting issue. Heparin and aspirin sounds like a good plan. Fx you get a bfp. x

Finally have some time to read back over the thread this week as its been moving very fast.

Flen- interested to see what your consultant said about stress as there's a trial at my local hospital about monitoring stress levels in ladies after RMC so may be something in it.

Moulton- I asked my consultant about changes to periods after MC and he advised it can take upto 6 months for your body to sort itself out after once MC and longer for multiple. Gave me hope my body might not be broken but still repairing itself.

Someone mentioned the promise trial. Was interested to see they are still actively recruiting for the trial at my local hospital. Made me wonder if it's been extended.

Sorry haven't pick out everybody and waving to everyone else x

This weekend is my dd's 4 birthday which of course is a happy (and manic) occasion and I know I am very lucky to have her compared to some ladies on here but nether less I am feeling sad that I may never have these milestones again.

Girlie the stress thing interests me as well, our last ditch attempt at ttc involved me quitting teaching for an office job while we give it everything this year. I really, really miss the classroom after 14 years in teaching and never wanting to do anything else. However, going through the fertility treatment and the miscarriages whilst trying to rush between the hospital and the classroom and keep a happy face in front of the children was hell, as was trying to get all my marking and planning done at home when in the evenings I just wanted to collapse on the sofa, or go out and ride my bike/swim/do anything to take my mind off it. I'm far more relaxed this year as a result so it was definitely the right decision, but I'd love to think I could go back in a few years when I have a child who I can spend the school holidays with (rather than next year because we've hit the end of the road and given up!).

just the rmc diagnosed me with factor V leiden thrombophilia. It 'may or may not' have had anything to do with my mc's, but they will 'treat empirically'.