Recurrent Miscarriage Support Thread 21 - tests, treatment, trying again.

[Justonemoretime]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

Good luck today Sasha I've had 2 x ERPC and for me they were absolutely the best thing to do.

The misprostal did nothing for me as I've got scarring on my cervix. It just made me a bit warm!!

You'll open your eyes and it will be over! But take it easy the next few days. The GA can make you very tired.

I know the feeling about desperately trying again. My 3 were all within 10 months and I felt this desperate need to keep trying.

However due to tests, Coventry and now my hystereoscopy I was forced into waiting. We are trying next cycle and it will have been a 5 month wait - but actually all my ducks are in a row now and I feel ready to jump off the edge so to speak.

And I guess that's the difference. I feel ready rather than it being a panicked knee jerk reaction

But only you know and of course we will support you all the way

Thinking of you today xx

I'm working backwards...

march gosh I hope your colleague stays away today. That is horribly hard. I wonder why she is coming in so much?

Sasha so sorry to hear your news. I agree with all that has been said so far. Coventry is a lot cheaper than Dr Shehata, so would be a good place to start whilst you are waiting for RMC appointment. I hope the erpc goes as well as it can today, and you have p!enty of support in RL x

flen and biscuits, I can understand your frustration at your normal uNK cell results. I agree that the scratch/prog/heparin, can be useful anyway. I know its hard though. Just to say, even if you did have high uNK cells, it certainly isn't a black and white answer for losses. I think Coventry would agree, as the treatment with prednisolone sometimes works, sometimes not - I would like to know the exact figure actually. It didn't work for me. Also if I have to go back for another scratch, Prof Brosens did warn me to be philosophical this time if my NK cells are normal, as they go up and down. Are you both now going to TTC?

biscuits I know exactly what you mean, I go through phases of self imploding at the Not Knowing, and also came came to the H-Y antigen theory, which Prof B was not very convinced about at all, but I would be interested to hear what Prof Q says - keep us updated.

pop I would ring Coventry today

barking so sorry about your dh"'s friend, that's just dreadful

Sasha you cannot TTC if you go to Coventry, but as they fit you in quick its not long to wait. I have always been told if you get pg naturally, ivf is of no benefit, unless you genetically test the embryo's before they go in - PGD, and thats v.expensive. Plus chromosomes may not be the reason for the mc's. Hope makes sense - am rushing now. Hugs today x

bootles i know you said you MC again even though you were taking the Pred/hep/Prog but was the embryo tested on that occasion? It strikes me that generally we have some of the lost embryos tested but not all and surely some of these lost pregnancies were never going to work due to issues with the egg?

I know I'm a bit sensitive to this at the moment because of my results, but if I hadn't asked for the embryo to be tested I would have assumed it was a clotting problem and blamed my body.

Cross post Sasha. For Coventry I think they need to give your lining a chance to normalise post mc hence waiting 2 cycles. I waited 2 or 3 months for my rmc appointment I think, but it varies. Your gp could do some preliminary tests such as thyroid, and basic clotting tests, but they may advise waiting more than a coup!e of weeks as things like clotting are altered in pg anyway so they would want everything to get back to normal. Don't quote me on that one, and perhaps try contacting them anyway. I know this desperate feeling of going on on on, forwards forwards forwards, and I too panicked about the age gap with DS (more philosophical these days) but you will get these appointments in time. Think of the waiting as time to prepare your lining again, to give it the best chance. Frustrating I know x

Sasha sorry you're an old hand at erpc. It's rubbish. Hope everything goes as well as it can today. But please brain dump anything anytime. We all do. It's what we're here for. I don't know anything about the Lister. I did enquire with Dr shehatas office a while ago and there was probably about a 5 week wait for an appointment back then. If you contact them, they'll help you. I'm not sure why I contacted them. Probably to check prices in case I win the lottery plus its not a million miles from us location wise. Re tests, you need to be about 6 weeks post mc to have most of the bloods done I think... Feel free to correct me ladies.

flen and biscuits I'm normal as well... Well according to coventry and nk cells. Any future pregnancy at the mo will still benefit from the scratch as your linings should be working really well.

Big Friday wave to everyone else. We travelled north to my family overnight. Thinking of coming out about this bfp tonight. They don't know about the mcs. No way I can fake drinking copious amounts of vino with them tonight...

sasha very sorry for your loss, I hope the erpc goes smoothly and I wish you a quick, painless physical recovery (obviously emotional recovery is another thing). In terms of getting through those immediate days after the mc, I found watching box sets helped pass the time (downtown abbey after mc2), eating chocolate and buying in 'nice' ready meals to save us cooking helped.

flen and biscuits sorry your results don't feel to be useful, hopefully the positive stories on here help though.

barking sorry to hear about your dhs friend, that is so sad and really puts things into perspective.

lady and erica congratulations on your BFPs, hope this is the one for you both.

march hope that silly woman at work doesn't take her baby In again, there really is no need.

Waves to everyone else! Sorry those I've missed!

Ooh, great news on the positive scans

sebs they tested but got no results. I was nearly as devestated at that as I was at the actual loss. I had one T22 loss, one chromosomally normal mc, and a chromosomally normal tfmr - she would have died at some point, but no-one knows why there were the problems there were. Two losses with chromosomes unknown. So I sort of throw my hands up at the whole thing in despair!

bootles I think this is the problem, so many variables, hence why they suggest keep trying incase we hit on a great egg with great lining etc etc and a successful pregnancy results!! hollow laugh

I really think age is playing a part for most of us. Looking at the stats sheets the majority if us are late thirties and I think things just fuck up at that age. There will always be some who sail through pregnancies in their forties but I do think they are not the norm unfortunately.

sasha, hand holding for today. As others have said, they normally want you to be 6 weeks clear for the regular rmc testing and 2 cycles for Coventry (as lining is thinner straight after mc so not enough for the biopsy).

No baby in work today. so far. I think they are keeping in touch days, but i don't think you're supposed to bring the baby in with you! She is coming back to work when the baby is 3 months so i guess she's preparing for that.

barking, so sorry to hear about your dh friend. How awful.

Positive ov test this am so Coventry booked for next Friday! Yay!!!!

Well done Pop

Good luck today [Sasha]

Great news pop. Look forward to hearing all about it. Hope it's a positive experience x

Good news pop

thinking of you today sasha

Thinking of you today, sasha, hope the physical side of things does as smoothly as possible for you. Lots of box sets/TV. I also always find that being active in some way helps, for example baking, gardening. After my second mc, I painted all our garden furniture in a day... It helps.

Like others, I found that taking a 'proper' break from ttc can really help you get your head back together again. The whole ttc/mc thing completely takes over your life - can anyone remember the last time they had a day where did not think about it one way or another? It really consumes you, and not it a good way.
I think it's important to take a step back from it all and try to focus on other things, things that you actually enjoy. It's so easy to forget that there is a life outside ttc, mc etc. I for one am thoroughly sick of it, and am seriously thinking that this pregnancy is going to be my last try.
Take your time, try not to panic about what next. First thing is to get back on your feet xx

Great news, pop!

Sympathies to all who had normal test results back, nothing is more frustrating! The one time you actually want them to find something wrong with you, so that they can come up with a magic cure. Fingers crossed that you'll be like just, get the heparin and progesterone and have a successful pregnancy next time.

diddly Are you going to tell your family about the bfp? I'm going to wait, I think. My mum is visiting at the end of May, and by that time, I will have passed the 8 week milestone, so hopefully will have something positive to report...

Great news Pop

Sorry you are an old hand at the ERPC's Sasha - mc, the gift that keeps on giving.

Still no results for me from Coventry. Grrr which is a bit frustrating knowing Flen and Biscuits have got theirs.

Sebs I agree the age think must play a part. I am 40 next year and DP is 48 next year and the age thing really bothers me as I've said previously and I do worry it's going to get no better.

Am still coughing like a baying donkey so that needs to get better for Wednesdays op.

brummie Have you tried Manuka honey? It's not cheap, but great for boosting the immune system, might help with your cold. How annoying that Coventry are dragging their feet, can you chase them?

sebs that could have a bearing, our age, but my first MC was when I was 29, so presumably in better fertility shape then! It is just such a mystery..,

bootles we did TTC this month, currently 7 DPO with progesterone up my bum so we will see!

sasha - so sorry you are going through this again.

I looked into testing in London. Dr S seems to major on immune issues. My Bupa policy would have covered the cost of the consultation but not any of the testing. The wait time for an initial consultation back in jan was 8 weeks.

In the end I went with Dr Thum from the Lister. According to my acupuncturist who has close ties to the london ivf clinics, Dr Thum is the person to see at the Lister regarding mc. But, he isn't Bupa registered, so they won't pay the consultation cost. I had a really really positive experience with him - he is very logical (which is totally my thing) and step by step in his analysis of the testing he would suggest. I was also a bit concerned that he would try to push us into ivf with pre genetic testing (as this would raise more money for the clinic). But he didn't do that at all. Actually he said trying again would probably give us a better chance of success than ivf, but that if I mc again and was able to get the fetus tested then we could discuss this again if it turned out to be chromosomal again.

He does nk testing via a blood test rather than a uterine sample. From what I read, there is no consistency on which method is considered best, with proponents of each, raising critisim of the other. Dr Thum's argument for blood testing is that the uterine testing is only a snap shot at a point in time and the result could be different in different cycles. Those who favor uterine testing, I understand say nk cells in the blood are no indication of the situation in the uterus... Anyway, with the blood test, I think they do the following (hope I am remembering this correctly) - they look at the level of nk cells and the aggression when they mix them with placental type material (not sure where this material comes from and I didn't ask!). They then do three tests - one to see if the immune response is reduced by steroids, one on the effect of IVIG and one on intrallipids. Based on that they suggest the most appropriate treatment for you (for me steroids). Dr Thum explains everything really clearly though in the initial appointment with lots of time I ask questions.

Hope that helps a little x

Cloud I chased Kerri on Tuesday and she explicitly said I had to wait between 4-6 weeks (and it's 4 weeks today) so I feel like I shouldn't chase her again

Hi sasha - yep private is expensive. I think I paid something like £200 for initial consultation with Dr T, then maybe £450 for nk cells and £150 for follow up, but don't quote me on that . Coventry is definitely cheaper, but for me I was going crazy at the feeling of inactivity of waiting even longer to try again, so it was more to help my mental health than because I thought I would get better advice.