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?

Thank you baking - I don't suppose you know if this could be a factor even after you've had a healthy pregnancy (about five years ago). My DP isn't dd father though so that might also be a factor. It definitely sounds like something worth looking at - do the nhs support it or is it just the clinic in Coventry? I'm so glad I was pointed towards this thread!

Baking explained it so much better than I could! At the moment, the Coventry service and research is funded through individual payments, although it is part of the NHS. It costs £360, but that includes consultation, biopsy, lab costs, and follow up appointments. I had three scans there as well as all my prescribing, so it felt well worth it! Not to seem too much of an advert, but meeting Prof Brosens was such a relie . I needed to be heard and to have someone understand what I'd been through, someone who didn't just shrug and say "we could give x a go".

Worth googling them and reading a bit more about them and their work...

About after a healthy pg, yes, I have two DSs, youngest is 2.5, and Baking and Tiny both have DCs too.

It is definitely worth getting chromosome testing for you and DP just to rule out any issues there. Your GP or consultant can arrange this. My consultant wanted us to get this before going to Coventry, to make the most of the free tests available before paying.

I got the impression that you pay for the procedure but everything else is NHS, so you don't have to pay privately for the prescriptions etc., but just pay the normal NHS fee.

Under the heading of 'the things kids say', my 3 yr old niece said to me the other day 'Have your children died?' and followed it up with 'Are your cats your children now?'... Out of the mouths of babes...! Bless her. Makes me wonder what/how much she's overheard...!

It seems that coventry is more popular than the london clinics who look at implantation/NK (and baking from what you say they seem to have a more aggressive treatment plan). Why did you guys opt for coventry not london? So Tanny there were no extra fees on top of the £360? Not that I mind spending the money, only that funds are limited and to have an idea will help me plan.

Tanny it sounds like you had a consultant guiding you which is great. We still haven't had our own chromosomes tested, and St.Mary's haven't suggested it - which seems odd. Maybe because we have DS as proof that we can, but still. I saw a genetics counsellor after my tfmr who concluded it was unlikely that we had a genetic issue between us. In the end we decided not to have further tests because even if something were found, we would keep trying anyway as we know we can produce a healthy child. However now it may change the plan to know (ie coventry or not).
boozles thanks for asking the question that resulted in such a concise answer from baking - that was useful for me too!
just bless your neice - must have been emotional to hear her say it. What did you say in response?!

Luckily my mum was there and said 'She's very busy being a lovely Aunty to you.', so I didn't need to say anything. That answer seemed to do the trick. I don't talk about it in front of her, but she's clearly picked something up from someone about it. I wasn't upset, just reflective about the whole thing..

Bootles i went to Coventry because they are the ones who do uterine NK cells (London just do a blood test as fas as i know) and they are cheaper

I also only paid the £360 and fortunately as I had a good GP and EPU local to me haven't needed to get back to Coventry for scans.

My DD is 2.7yo and was born with no treatment, but after 3 mcs, so when I then had mc 4 and 5 it really hit me as I was hoping that my body had learnt what to do in that pregnancy...

Aww just that just brought a tear to my eye

That's brilliant - I'll definitely book in for a couple of months time. Why does everything take so long to settle down enough to get tested! St Mary's Manchester are doing testing on both me and DP to check our comparability but it'll be at least another 4 months and then another two to get the results through. They did say we don't have to wait that long to try again but they would recommend it, with my clock ticking away we just don't know what to do for the best.
Gah! I'd go over this a million times if I knew I'd get a happy, healthy baby at the end of it, it's just so hard not having a clue what the future holds. Hope everyone has a happy Thursday :) xx

Bootles I also went to Coventry because they're cheaper and because of the uterine test, but also because their research is so well respected. My consultant did a two year research project there, so he was very supportive of me going there.

We have a DS together, and kids from previous relationships, but my DH still has a wonky chromosome that came up on the testing. We have a genetic counselling appointment on Tuesday to find out the significance of it.

I agree though, it didn't stop us trying, but might explain one or two of our loses. Until we had our first MC, neither of us had experienced any problems conceiving.

Just is right, everything is NHS apart from the initial consultation, test and follow up phone consultation, it just felt special to get scanned by Prof B!

Just out of the mouths of babes indeed! I like it, everyone still pussyfoots around me, and kids just don't get that.

Boozle it's hard to be on an enforced wait, but I think it did me a load of good, both physically and emotionally. I'm 42, really feel the clock ticking. In my head, I kept thinking "if I'm not pg by my 42nd birthday it's never going to happen". I got pg a month after my birthday!

I would add I chose the London clinic route and only outcome was my pockets are a lot lighter! Their aggressive treatment didn't work. I didn't want to wait two AFs to see Coventry!!

This time I will go and see them, mainly because my mcs were very similar to Tanny before and so I think the scratch itself may be of help to support implantation.

Hi ladies

I'm sorry, I've read the thread but there's lots going on, so general hello to the newbies & regulars, waves to everyone

I am really in struggletown at the moment. I had my first counselling session yesterday, it was good to talk to someone but was more of a "why I was there, where from here, what tools I'm supposed to learn" chat. It was the first time I've heard what I'm going through at the moment described as "grief" which was a huge relief. I guess I think of grief as something related to someone I knew, it's so hard when MC means you lose an idea more than a person if that makes sense? I mean a baby I ever got to hold or speak to. I have a scan picture from my first MC but nothing from my 2nd so all I have is the slow heartbeat over and over in my head. I wish I had a picture I could look at, maybe next time I'm at the EPU I'll see if they kept one on file?

More acupuncture today, new doctor who recommended I wait 3 months before trying again, which had me in floods of tears. I think sometimes that we should wait but I just CAN'T if you know what I mean? We waited 2 months after MC1 and then it took another 3 months to conceive (not long in the scheme of things I know) but I just don't want to wait this time. I can't cope with the idea.

Sorry about the brain dump, my mind is all over the place and I can't stop crying. It's a busy time at work but even that isn't taking my mind off it.

I chose Coventry because it was a fixed cost and from what I read it's not clear whether raised NK levels in the blood mean anything wrt pregnancy. The treatments prescribed in London are not available on the NHS, require regular trips there and are £££ as well as being more controversial than steroids. Steroids are not nice, but they are used a lot and used in pregnant women to control all sorts of diseases, so they are a known quantity. I only had one trip to Coventry then a phone consultation about the results, my GP prescribed the meds on the basis of a letter from Prof Q. I already had two boys and we'd just decided that was as far as we were prepared to go, it was our last ditch attempt.
Prof Q did say it was common for NK issues to happen after a previous successful pregnancy. I had a normal pregnancy with my son in 2006, MC in 2009, very dodgy pregnancy in 2010 with DS2, lots of bleeding, small placenta, he was low birthweight, then 3 miscarriages. Apparently problems are more common in mothers of boys as well - maybe a male baby is more likely to 'trigger' a problem??
There are a lot more patients of the London clinics on the thread called "pregnant or TTC on pred" on the conception boards, if you want the other side of the story for balance!

charlie sorry you are having a tough day. I think in some ways it can be easier to work through the grieving process for someone you've known, you can talk about memories and look at photos etc. We don't always have the tools to grieve for lost potential - hopefully the counselling will help you with that.

Thanks all for the advice. I think I will do what you suggest and ho back to my gp. Fingers crossed they will be in a sympathetic mood.

Charlie Everything you have said makes perfect sense to me. You make all those plans in your head about what life is going to be like in the future and when it is taken away it's devastating. I felt exactly the same after mc1, I felt like I was not really entitled to be so upset because I had not lost a physical person that everyone else could see. After a while I realised I was justified in feeling that way and you are right, you do need to grieve.

Did you think your counseling helped? I had my first session a few weeks ago and was not a great fan. I have another session tomorrow so will stick with it for a few more weeks.

Hi purple thanks for your comment. I've had counselling in the past (for unconnected things) and it's been useful. I hope this works out, anything is better than how I'm feeling right now - borderline hysterical most of the time.

I went to Coventry because all my St Mary's tests were normal and, after having the septum removed, I didn't get pg for 3 months. Since it was taking it's sweet time (I used to fall at the drop of a hat), I thought it would be worth just ruling NK cells out, and I thought the scratch might help. Also, Baking had had such a positive experience there.

Thanks so much Baking, Tanny Tiny and Just - all your comments are really helpful. I will read up on prof's Quenby and Brosens, and have a look on the pred thread/London clinic too. I'm in London, but see what you mean Baking about prednisolone being a well used drug in pregnancy already. I think I will contact the Coventry clinic tomorrow and try to book in. I just can't carry on like this, and now knowing my 4th was chromosomally normal, the whole picture is different (I think). Interesting what you say about boys baking - I have DS, then the latter 3 losses were girl boy boy (as per chromosomes). Thanks again ladies. Just let's hope the protocol there helps you next time.

Back to the things little ones say..my DS kept repeatedly saying 'your tummy really big (its not really..slim by luck of genetics more than effort) there's a baby in there' last time I was pregnant. Admittedly he has said it on and off since tfmr pregnancy, when the bloody Dr kept saying baby - he totally picked up on it. I now tell them to use language he won't understand. But last time he just kept saying it - he definitely hadn't heard or seen anything that would have prompted him. Weird.

Charlie I think the grief of mc is the grief for what you don't have, what you haven't discovered about that embryo. Its a very real grief and deserves recognition and validity. I'm sorry you are having such a rough day.

Sorry not to namecheck all .. I know there's a lot going on here at the moment, but hugs to all who need them.

Sorry to hear that you are struggling, charlie, hopefully, the counselling will help. It's such a slog, working your way back up from the bottom of the pit, isn't it!
I am finding it very useful - my counsellor is very good (I think). It is so obvious that she has dealt with many women like me, and I come out of every session (so far) feeling that she has helped me in some way or other. Not that it's always pleasant, mind you! Sometimes it gets quite uncomfortable, when I have to face my demons... But she makes me do it, supporting me all the time.
I wish the service was available to more women.
Why did your doctor recommend to wait before ttc again?

And I believe that the grief of an mc is a very real grief! You lose something/someone very dear and special, who carries many hopes and dreams, and with whom you have a very special connection. How can there be no grief, when you lose it?!
I admit that it is a very different type of loss that people would normally associate with grieving, but nonetheless, you go through a grieving process. Which, sadly, many don't acknowledge or appreciate.

charlie, cloud says it how i mean it..it's the loss of that one, who you have already made a connection with, I'm not sure I explained the way I feel about it properly. More than just the grief for what never was.

You're also grieving for the life you thought you would have, that you haven't ended up having.

I found myself grieving for my future, especially with my MMC. I felt such a profound sense of guilt that I couldn't do the one thing I should, and protect my baby and keep it safe. It stays with me, but makes me stronger, if that makes sense.

Totally agree, Tanny. Such a profound erosion of trust in your own body to do the one thing it was intended to do. I've had 3 MMCs. Horrible.

tanny I keep thinking of that internet meme "you only had ONE JOB" and how my one job with the baby is keeping it alive, which I keep failing to do. What you say is so right, while you know in your head that it was likely nothing to do with YOU, there is such guilt. Mine would probably have been a MMC if I hadn't gone for a private scan, I'm not sure I could have coped, you ladies are so strong xx

Tanny and Just I felt/feel the same - very let down by my body. The other day DS was playing with children in the park and I felt immense guilt that I haven't given him a sibling. We can't control everything and I find that very hard to accept.

Charlie - you would have coped, I'm sure. I think the guilt is normal, but I also think we need to keep reminding ourselves that it is not our fault.