Recurrent Miscarriage Support Thread 18 - tests, treatment, trying again.

[bakingtins]

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.

It's been a while since I posted, I've been reading and then written a few huge posts that my phone has then eaten!

tanny good luck hoping you have your baby in your arms soon

march one thing you said a while ago really stuck with me about you feeling guilty about your bfp. Please never feel guilty as someone who has been ttc #1 for nearly four years I would never want anyone to feel that esp the ladies on here who have been through so much.

Glad the resignations have gone well for those that have had meetings recently.

baking glad work have been understanding and hoping faith continues to improve

I've had all my standard tests back now and they are all normal - I know this is good but it would have been nice to have an answer! I found out that my hospital didn't send the tissue off for chromosome testing, it was tested for infections and something but not chromosomes - they didn't really explain why they apologised when I got upset but I'm still not sure if they messed up or if they just don't normally do it - I was angry but there's nothing that can be done now so trying not to get stressed. I'm waiting to ov so I can go to coventry! In flashing smileys now so hopefully will get a positive in the next few days.

diddly hope you get on ok today

littlebear I'm from South Wales I'm not aware of any specialist rmc. I've seen jonathon pembridge at spire to get my blood tests done first - he was nice and informative but I don't think he specialises as such. I'm under the royal gwent, they have said that they would follow any protocol from coventry so at least I have their support! Was it uhw that were rubbish with you?

Oh also meant to say barking great news about ivf! Do you know when you start? Will you be on long protocol? We've got ivf appt next week and then hopefully will start on my next cycle!

Sorry to hear about your gran, counting. She sounds an amazing lady.

Is it your mri today cloud? Hope it goes ok.

Still thinking about you Tanny. I hope the midwife has a proper plan.

freckle I join in the grrs at how you were treated.

sebs I totally identify with the panic. Hang in there, you are doing a great job of caring for ds.

Have channelled all my worries into the gestational diabetes. My mood seems to depend entirely on my readings. Had a high one yesterday which was hopefully due to a blip because of having coffee at the wrong time (thanks Tiny for the support on the gd thread) and was in a depressed state all afternoon. Not helped ny sight of blood when I went to the loo - turned out to be back passage thank goodness but it's hard to manage digestive system on restricted diet. Better this morning so hopefully back on track but have taken the day off in lieu of some late nights so I can get ready for my weekend away in a more relaxed fashion. Massive scanxiety for growth scan on 16th though. Is to check she is not too big or too small due to blood sugars. Actually more worried about the latter as she was on 30th percentile at 20 week scan and my bump is measuring a bit under. Agh, when will this panic end?

Crossed posts flower. I feel for you with the no results- I had the same. Good luck with the ivf appointment. At least with that route you know your drs will be throwing everything at it .

Good to hear from you floweroct. Are you doing Coventry this month or next? Sorry you didn't get a result on the genetic testing. That is so frustrating, particularly if it's just a f**k up. I didn't get a result back for the testing on mc3 and found it really upsetting. Getting normal results for standard tests is also v frustrating. I know we should be happy that we are 'normal' but totally with you on that feeling that you just want there to be a reason (a treatable one). Hope Coventry can help you and good luck for the ivf.

Thanks march yes coventry this month hopefully! Probably 16th or 20th march if I ov soon, my cycles vary so hopefully ill have a relatively short one this month!
Thanks longest I don't know anything about gd but hope you can relax soon, fingers crossed for the scan

I am dreading the OV before Coventry as I'm sure I'll end up DTD as I won't want to miss an opportunity. I am still bleeding and just want to move on now as I'm wildly frustrated at the nothingness. No results, no testing, no possibility of conceiving, no baby. Just me in a dark dark hole waiting and bleeding. Just what I had planned for March '15

My brain constantly switches from hope to no hope, anyone do the same? I really felt like I got in under the wire with the last pregnancy I lost, so now I seem to go from 'you never know, anything could happen' to 'give it up and do something else, stop thinking about it, la la la'. I wish I had an off button it's exhausting.

Hey seb - yes I am completely the same. One minute I am all determined, this will not beat me, I will get pg again and this next pregnancy will work and then the day I just think, fuck it all, its never going to happen so why ruin another year of my life on this. I think I've just got to the stage of desperately wanting the whole ttc merry go round to stop, either with a baby or by giving up. Mentally I don't feel I can take much more and want to give up, but whenever I really truly think of doing that, I just think what's the harm in keeping trying. God - is confusing. x

Can i ask a coventry question (i was thinking of doing cov simultanious with nhs tests to save time - since i'm so fecking ancient and all). Do you need to book further in advance, or do i have this right - have 2 periods, ovulate for third month after mc and call kerri, who books you in only 7-10 days in advance? So that's 3 eggs down (possibly good eggs). Its hard to decide whether to hold off trying, when all tests could be negative and be four months even older. Or whether doing the tests all now and having the coventry protocol done would throw all good chances at it at once - it's a risk. Big decissions...i may need to go shopping to think about this. In the meentime i've got gp apt booked for today to ask about referral and i have comments highlighted that i want to use, starting with bakingtins. X

Hi freckle - it's a tough decision isn't it. If you didn't want to wait for coventry but did want the nk testing done, then you could go for the blood test instead. I have heard critisim of both blood and uterine testing - of blood testing because it is testing the cells in general, not specifically related to pg and of uterine testing because it is only a snap shot of the cells in that month which then get swept away with af and no guarentee the same conditions will exist next month. Personally I decided not to wait and went for the blood test - they check level of nk cells and 'aggression'! Then they simulate placental material and check how the cells react to that (mine had a very high response). Then finally they add steroids etc to see if that affects the response. For me, it brought it down to normal levels. But it is expensive - the test was £500 I think. i know a few people have commented that lots of people who have the blood test seem to test positive (as opposed to uterine test), but I guess in my mind I just want to throw everything at next pg, so in my head I don't mind if blood test is less specific than the uterine test, as I will be giving something new - steroids - a go, which could do the trick. Then on the other protocol that coventry suggest - progesterone and heparin, you could see if your rmc would support this protocol - mine have agreed to (although they wobbled a bit when last mc came back as chromosomal). Anyway, just adding another idea if you didn't want to wait. x

That's really interesting sun, didn't realise the blood testing went into that detail. Sounds more thorough than i had been led to believe. And like you say, if it leads to them prescribing steroids which is what Coventry prescribe anyway then that's the result you need.

Have vaguely wondered whether they would ever do a trial for steroids as a generalised treatment for rmc. I know there are possible side effects, but Seems to work for a lot of people.

Hello... at work so must be quick and don't have time to read all 40 pages...
I'm 37, DH 48 (eek!)
DS 7, DS4, then 4 x M/C.
I emailed Prof Quenby's secretary on Tuesday but no response - does anyone know how quick they are at getting back/organising private appointment? Will phone later but clock is ticking as I'm on day 4 now...
Also noticed a fair few of us having m/c after sons. Has anyone heard that after having a boy something can happen that makes you produce antibodies that reject a future male fetus? I know last m/c was boys. Unlikely that all four were though.
Thank you!

Secretary at Coventry that is!

busymum kerri got back to me the next day I think. But you only make appt when you ov so there's no need to worry yet if you're only cd4

Oh sorry I may have misunderstood if you're cd4 or 4dpo if the latter I'd say give her a call

Thanks Flower, will need to buy those (OPK?) test things then as never really monitored OV before.

No, you were right. CD4. Thank you.

Welcome busy, and sorry you find yourself here.
Yes, as floweroct says, test with opk and phone kerri when you ov. You also need to have had 2 cycles since last mc. The are about 8 of us heading there in the next few months so let us know how you get on.

We have had a few discussions about pregnancy triggering an immune response causing future rmc, as it seems to fit the situation that many of us find ourselves in, but never heard it mentioned as an issue related to boys specifically. I have a dd and then 4 mc, and i know a few others on here have dd rather than ds, so i think if it is a real thing (just hypothesised at the mo) then it's probably equal in terms of gender.

Is anyone near a computer who can start the next thread?

Hi Marchgirl, thanks for the welcome and your response. I think I read it in Wikipedia(!) will try and find and post. And I need to come up with a better username! !
Will keep you updated re: Coventry. Hope it goes well for you.

Good god, I am really struggling today! Just thought what an odd thing that was to say!! By "goes well" I meant you can get an appointment and get seen and maybe get answers etc. I think I need caffeine...

Welcome busy, we've heard the after boys thing too. I think baking heard it from Prof Q. Would be interested in any research you find though.

Definitely no baby Tan on this thread. I'll fill you all in on the other side...

Sunandrainbow thankyou for that brilliantly helpfull information, my brain is expanding daily with all you clever women! I am going to take what you have said to my (hopefully new if gp referres me this aft) consultant as i think hw is open to ideas and a bit more inovative than who i have already seen.
Hello Busymumm!. I have one ds, 19 mnths, 3 mc since him in 8 months. Sorry you find yourself here, slow train through shitsville and all (think march said that?!) Its a bit like working in a shit school for me, situation is horrendous but the staff are amazing...x

www.mumsnet.com/Talk/miscarriage/2324581-Recurrent-Miscarriage-Support-Thread-19-tests-treatment-trying-again

I hope this works, not started a new thread before....