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 :)

Brummie I echo the others, especially just. There is a strength in you that means you will get through this, and it will shape who you are, but you will be stronger. You will get there, and you will love your children with all your being.

Being pg now feels like such an enormous blessing after all the pain. But I only have to look in the mirror to see the effects of my recent past. After my last MC, in Feb, I lost handfuls of hair. My face is now surrounded by a sea of fuzz, some of it white (another effect). My wrinkles are deeper. But I am stronger too.

I hope you can now physically recover, and find some time to grieve. We're all here when you need us. x

I also send hugs Brummie, it is such a bleak and isolating experience, and I'm glad the staff showed you compassion and care. Like some others have said, I didn't bleed immediately, but did maybe 24 hours later for a few days. I also had some cramps and passed some clots. Look after yourself and be kind and gentle. It takes time, and in my experience a lot of sweet and salty popcorn.

tanny I am glad you said that - I feel as though the losses of this year are etched on my face too. I'm very into photography, and when I was looking through the pictures from the last year, the change was noticeable. They stay with us.

brummie glad you are home. Nothing I can say to add to that already said, just sending hugs.

Flen sweet and salty popcorn is the best ever!

brummie Glad you are home and that it went smoothly, at least physically. The mental healing is, of course, a completely different matter. I can relate to the 'feeling broken', it's been like this after every miscarriage, and the more I've had, the longer it has lasted/is lasting. Look after yourself. I agree with the above post to keep pads close by, I also bled very little directly after my ERPC, but had a bit more coming a few days afterwards.

monten Do get married! No point putting your life on hold for ttc, it has to go on! And a wedding is a nice and positive thing to plan and think about. Love the idea of getting donations instead of presents. If I ever get involved in any fundraising again, my charity of choice will be the one who runs the post-mc counselling that I've been getting.

twilight Congratulations! Let 2015 be your baby-year! I liked the idea of your dog being involved in your ttc

I'm also more or less out - I make no effort hiding my mcs anymore, although I don't use the topic as a conversation starter. I posted on Fb on the babyloss awareness day and was overwhelmed by the kind responses I had from people, some of them sharing their own sad stories, even though I don't know them very well.
However, I was quite hurt over Christmas, when no one from my close family asked once how I am doing It's as if they have all either forgotten about it or just choose to ignore what has happened. I realise that I have become very good at pretending that all is fine and that I don't exactly invite enquiries, but it would have been nice if anyone had asked...

For me, the effects of my mc are not so much visible on my face, but on my hips, thighs, bum I have put on about 10kg in the last year, which I am very annoyed about. OK, some of that was pg-related, but I managed to loose 5kg again during the summer, which I then put back on when I went through a very dark phase in the autumn, when I stopped running and increased my eating... Grrr . So my goal is to loose that weight before we go skiing in March - I have to, otherwise I won't fit into my ski pants! So am going to go for a run now - not looking forward to it, it's freezing here!

Brummie, glad you're home. Its miserable, isn't it? Hugs to you.
I also agree with the deep need to acknowledge and absolute refusal to ignore my first three babies. They were real enough to me and having known them changed me in a fundamental way. I won't pretend they never happened. People find recurrent mc'ers sometimes difficult to relate to because not only do they not get it, but because we are strong in a slightly PTSD way that only real survivors are. It probably makes us a bit intimidating to some people, but we should be proud of our strength, even when we don't feel very strong. I feel like, when I fight for the next test, treatment or scan that it is a matter or life and death, its just that its a future life I'm fighting for. Any mother would keep marching forward and do the same.

Room for another one?

Hope you don't mind my importing my post from a different thread- hoping someone might get what I'm talking about. Here it is:

^^
Hi all

I am 33, have one 4 yr old DS and work 4 days a week in a public sector organisation. I had miscarriage no 5 over Christmas.

For the first 3 miscarriages, I took about a week of work each time and then carried on. (In fact the third one I flew to HongKong the following week for work). I totally felt 'well, they're not all destined to survive' and felt positive that it wouldn't be long before a sucessful pregnancy.

Miscarriage number 4 was different, it properly tipped me over the edge, it coincided with a temporary promotion and major building work on our house. Terrible timing all round, I ended up being off work with anxiety for 8 weeks. When I went back to work i moved out of the temporary promotion as soon as was decently possible, into a role at my lower grade, taking 3 weeks between the two to further recuperate. That was all last summer.

I spent the autumn trying to build up my strength, and was on the mend in terms of wellbeing. Felt like I was coping at home and work and things were going OK. (Albeit work was a bit full on and juggling work and family life is always tough)

Then over Christmas I had miscarriage number 5 and just like last time it has swept away my professional confidence. I simply cannot imagine myself functioning at work. I see the whole thing as beyond my resources. Very daunting. I want to reduce my hours or drop a grade. My sister is suggesting a phased return but I just don't see myself managing even that.

Has anyone else experienced this.?

Cloud I'm really with you on the fitness thing. This pregnant/not pregnant thing is so disruptive to good habits. You will get into those ski pants. You will.

We are 'out' to friends and family. Not so much at work.

Best wishes Brummie . x

Hello counting so sorry to read your story. Brummie and Bootles on this thread had bad news over Christmas too and to me it just seems to add insult to injury fit to happen at a time of year when everyone is celebrating.

Have you had any tests, a diagnosis or a treatment plan?

As for work, you don't need to make any decisions right now. You are grieving and need to give yourself time to recover. Take off as long as you need.

On the other hand I do know others on this thread have been spurred through the mcs to make career changes and say it's the only positive thing to come out of the sorry situation, but I would be more inclined to try and make it a positive shift to something you enjoy more or that would give you a better balance, rather than simply diversifying when for understandable reasons it all feels too much at the moment.

Downsizing, not diversifying. Sorry for confusing post.

Welcome to the feed counting.

So sorry to read of your losses and the hard journey you've been through. Christmas is one of the hardest times to lose a baby and my heart goes out to you

There are lots of lovely ladies on here who will share their stories and knowledge with you.

You are most certainly not alone in losing some confidence along the way and it sounds as though you have a demanding job which must make it harder at times.

Your sister's idea of a phased return sounds like a good suggestion to me but I can see why you feel concerned that it won't be enough. Perhaps being signed off and reflecting for a month would help you? You don't want to make any snap decisions that you may later regret.

My journey means I've gone from a very outgoing person to someone who struggles with confidence both in the workplace and socially. I went out last night for a meal with friends and had to squeeze DH's hand very tight for most of it. The old me would be appalled!

I have reduced my hours at work which I have found to help. The only downside is occasionally having the extra time on my hands to dwell so I try to bake or walk when there's a bit slot in my diary.

XxX

*Big not bit

Hi counting, sorry to hear about your latest sad news. I would say it's way too early to think about work. You clearly need space and time so get signed off and take it. Only when you feel your head is clearer should you start thinking about what you can/can't do or more importantly what you do/don't want to do.
And I echo the fitness frustration. I seem to get into an injury free streak, get really fit, then have to stop, and by the time I'm able to start again I'm back at square one and can't keep up with the friends I was previously training with . I wouldn't care one bit about not training if I was pg if I knew there was a baby at the end of it, but when my last mc took more than 5 weeks of bleeding and feeling weak and not able to do anything it's that extra little kick in the teeth on top of everything else.

Welcome AndCounting, and sorry for your losses. You have been though such a lot and it's not surprising that you feel at your wits end. It is, of course, very personal whether you are open with work or not, but perhaps it would be worth letting HR know as you ought to be protected against any negative impact on your work or salary for pregnancy related issues. They shouldn't be able to demote you or cut your pay, I wouldn't have thought? It would be worth getting some advice on that before you voluntarily take a pay cut or demotion - you might need the money to help with treatments and therapy in the future, if you find the NHS lacking. You need proper support to recover, and I should think that your pay and conditions ought to be protected while you get the help you need.

Have you been offered any testing? If not, you are entitled, so demand it. Statistically, 3+ mcs is more than bad luck and warrants proper medical investigations. Where abouts do you live? Try to get referred to a specialist RMC clinic like St Mary's, London, or even self refer to the Implantation clinic in Coventry (that costs £360, so try to go through the NHS first - you are entitled).

Some of us have had counselling or cognitive hypnotherapy to help with what basically boils down to medical PTSD or similar - you're going though normal stress/shock reactions, and help is out there (on the NHS if you're lucky).

Take care of yourself, and good luck.

Thanks, longest and catlover.

Longest i went to the reccurent MC clinic at our local hospital. They did bloods, scan etc but nothing to see here. I've decided over xmas to seek a referral to imperial college team. Thanks for your point about pursuing something I enjoy- that really resonates and now might be the time for me. I'll give some though to that. Thank you.

Catlover well done you for going to the meal, and pleased you have supportive hand to squeeze. Thanks for the flowers and yes, I'll take time to reflect rather thank jumping in.

Feel better soon Bootles and Brummie

Thank you, Barking. My loss of confidence includes confidence in my own judgement about whether to stay signed off and so thanks for pointing that out. And yes, you are right about fitness adding insult to injury! Hey-ho. My mum and I are signed up to a bike race in June and I know for a fact she was counting on my being pregnant to get her out of it so I'm taking her down too! (Tee hee!)

Justone thank you for your post. It's really really helpful and I do very much appreciate it. The info on MC is overwhelming and it's kind and helpfulnof you to summarise some useful things.

Thanks again

I love this thread already.

That sounds a good plan counting. I would also think about the coventry clinic just mentioned. It's self funded nhs but at 360 pounds for testing and follow up consultation if is much cheaper than the private clinics and several on this thread put healthy pregnancies down to their treatment protocol, whether or not they have been diagnosed with high nk cells.

Will you have testing on the foetus this time? You are entitled to it and it can help with a diagnosis to know if there were chromosomal abnormalities.

Take heart that you are young and have time to keep trying for as long as you can bear to. There are positive stories on this thread after five mcs. Most have taken a break and looked for something new to try before continuing though.

Do you mind saying if you had your ds before the mcs started and whether there has been any sort of pattern in terms of gestation or chrosomal analysis?

Welcome counting and sorry for your losses. The ladies on here are fab and an encyclopaedia of knowledge on MCs or just a good group of ladies to vent at.

Cloud, I'm the same with the weight loss/ gain. Over the last year I have lost 1 1/2 stone through loosing/gaining cycle for each pregnancy however I'm still only 4 pounds loss from when I originally started a year ago ?? Enough moaning and I'm back into the latest effect to make sure I've lost a few more pounds before we ttc again.

Brummie, hope you're recuperating and being looked after at home. Remember to be kind to yourself. It's natural to feel lost at this stage x

longest my DS came first. Then the first 4 miscarriages were at 6,6,8,6 weeks respectively. This last one was at 10 weeks, but scan immediately prior to miscarriage revealed pregnancy sack measuring 6 wks. I am indeed interested in the Coventry Clinic. Is there any reason not to pirsue a 2 promnhed approach eg referral to St Marys AND pay to go to Coventry in the meantime. I assume one or both has huge waiting list? Missed the boat for collecting the products unfortunately.

Thanks, girlie

I feel huge. I went swimming today and my swimming costume was way too small, though I managed without a maternity one at all with dd, and I thought I was overweight at the beginning of that pregnancy and swore to myself I would try to be fitter next time. Am worried I may be too heavy for the birth centre this time as I have a high bmi. I am holding on to the fact that I lost a lot of weight after dd was born and won't be comfort eating this time as I am hanging up my ttc boots if this one works out. I wish I had lost some weight before getting pregnant again though. It happened quicker than ever before so took me a bit by surprise and I have been so hungry this pregnancy.

Longest, you are pregnant, that's great. How many weeks?

brummie big hugs. Glad it's done so you can start to grieve and take time to think without worrying about beds, not surprised you feel spent, be kind to yourself, thinking of you.

flen I am also under Mr Ajala, saw him just before Xmas, guessing you must be fairly near by! If you ever fancy a RL coffee to compare notes, PM me. I saw Mr Ajala when I had my cyst removed so requested to stay under him. I like him but he can get distracted so I would say be prepared to ask questions if he doesn't go into enough detail-that's what I found anyhow. Hope the appointment is helpful.

twighlight congrats and hoping that line keeps getting stronger.....

We pretty much 'out' about mc's, just found it kind if naturally got to a point where we wanted to tell friends but we haven't said anything on the dreaded Facebook, I'm not ready for that yet! I think I would like to raise some money for one of the charities, not sure what/how but maybe later this year. As you all know-hard to plan anything

AndCounting, the only thing I would say about going to both St Mary's and Coventry is that the consultants all went to university together and now there is a lot of (unhelpful) rivalry, so you won't get them to agree on a treatment plan. I found St Mary's very good for sorting out an anatomical issue and ruling out a lot of clotting issues, but when it came to confidence in a treatment plan for my next pg, my gut instinct was to go with the Coventry plan, which I did, and I'm now 15 weeks. You may find my blog post here of interest. It's a shame that not all hospitals sing from the same hymn sheet; not all offer the same tests, and most disagree with each other about the most recent treatments. By all means, see both, but you might want to keep it to yourself if you see them concurrently, at least until you have got a few results back and have an idea in your own mind about what treatment plan you feel will benefit you, having got a better idea of things you can rule in or out.

The Coventry clinic has no waiting list as such but you have to have had two periods since your last mc and be in the second half of your cycle and definitely not pregnant so it requires a break from ttc. For that reason I would seriously consider pursuing both simultaneously, or at least straight after each other, but you will need to be prepared to be thick skinned as st Mary's will poo poo the Coventry approach if you let on you're seeing them. Very frustrating!

St Mary's has a waiting list but it wasn't as long as I was expecting. My first nhs appointment was 8 weeks after my gp referral. By that time I had had an initial private consultation and some tests as it turned out I had some limited insurance. Are you a civil servant by any chance? I am in the public sector too and the insurance was through benenden, which is the civil service healthcare thing.

5 early losses after a healthy dc suggests to my inexpert self an implantation issue, either caused by hormones (that's what I suspect my cause to be and I put this time's better success down to agnus castus increasing progesterone but I will never know) or high nk cells, which is an immune Coventry would test for. Chromosomal abnormalities also cause early losses but is unlikely to account for all 5 unless you have a genetic issue yourself which is rare.