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?

I used the word conservatively wrongly - I meant he possibly errs on the side of caution a little - This is just my take on my experience with him...

Curve ball indeed! Triple I really feel for you. I wish consultants would think about the impact of the things they say sometimes.

Can you go and talk to him about it? Or talk to someone?

I wish I had some words of wisdom for you, but I know nothing about IVF...

Whoa, triple, curve ball indeed! Talk about bringing out the really big guns... Did he actually say what theose factors where that determine a successful pregnancy after repeated chromosomal abnormalities? I'd be interested to hear... Are you going to discuss this with him in more detail? How even more confusing!

just Lurk all you like, sometimes it is good to go into hibernation for a bit and clear your head. We're here if you need us.

I woke up with no voice and am feeling very sorry for myself. Looks as if I'll be spending the weekend with a nice fat cold. Hmph.

Good luck with the ERPC today Bristolian

Bristolian good luck, will be thinking of you.

Sorry for very quick message last time - was interrupted by dd. Wanted to say hello, welcome and sorry to Bristolian. I hope everything goes OK today.

Triple - hugs. Mr Rai told me that statistic too, and that I was probably in that camp as my other results came back clear but he didn't say the rest of it. In fact he advised against IVF and more implied it was bad luck - which I found difficult to accept, so I am interested to hear what he said to you. Can you remind me how old you are and whether you are ttc dc1? I am nearly 34 and have one dd. I haven't had any karotyping or product testing. I don't think I would be eligible for nhs IVF anyway as I have a child already, but I think policies vary from trust to trust.

Sorry you're unwell cloud. Look after yourself.

BFN for me this morning at 10DPO. Could be just too early but the symptoms I thought I had have vanished too so I think I am out this cycle. Mixed blessing - means I can go away without fretting too much and have my saline scan when AF arrives but I am a bit concerned that I did have symptoms that have now gone - and that could be another sign of implantation issues - ie an undetectable mc.

How do I go about getting my hormone levels checked? Via my GP or St Mary's? Am a bit confused that no one has suggested it as it seems like a fairly standard test. Unfortunately I'll be away for much of this next cycle anyway.

Ffs. SIL just announced she's pg. And we're all going off for a family weekend together. Thought I was coming out of this, but I feel like I've been punched in the guts.

I am sorry Just. Will she be sensitive, do you think?

I saw your fb post and wondered... Big hugs xxx

Thanks for the well wishes guys - it's all over and I'm back home having toast and tea already! They are sending the rest of the 'products' for genetic testing after histology for the poss molar and helping me get referred for treatment of the dermoid. The doctors couldn't have been more helpful - good old NHS.

Sorry you're upset by your SILs pregnancy just. I know it's no consolation but I feel exactly the same whenever I hear anyone's pregnancy news

Also sorry to hear about your BFN longest but it is early days... No idea about hormone testing here I'm afraid.

Thanks :) I'll be OK. Just very annoyed with myself over how hard it hit me. I really thought I was getting beyond that. It turns out they've won't be there this weekend, which makes life easier. I hope its because she feels ill (in the nicest possible way) rather than because they know how much of a nutter I am!
Glad you're OK Bristolian, take it easy over the weekend.
That 40% business is a bit scary!? If you are able to get more details, it would be great if you could share? Thanks. I've had 3 mmcs in a row, the last of which was Turner Syndrome, and I don't know what the others were. All had hbs before later bad news scans.
Oh well, onwards and upwards!

My GP did hormone tests (well, GP authorised them, then had to phone for appt with practice nurse to take them) they do FSH/LH on cycle day 1 or 2, then progesterone day 21 (assuming 28 days cycle) or 7 days post ov.

I'm not sure about this 3 chromosome problems in a row thing. How can they know that when chromosomes are very rarely tested until you get to MC3, and then only if you know enough to ask for it. The attitude seems to be chromosome problems unless proved otherwise. I know after I'd had 3 MC I was still getting the "chromosome problems how unlucky" line, it was only after MC4 was tested as normal that I started looking into the immune stuff. How long would they have kept spinning that line for if I hadn't?

just you may have answered this before, and feel free not to, but were your babies' HBs normal? Mine was very low then stopped which to me points to a heart defect but what would i know?! First mc stopped growing at 5.4 weeks so no hb at all which makes me think different causes?

Bristol - glad it went well. You can now move on. Are you have the genetic testing done?

Longest - sorry on bfn, but it is early days, so don't lose hope. You may have ovulated late. If it is a bfn then open a glass of wine ! I am 36 btw with one DC. So little bit older than you. Have you had 2 mcs or 3mcs? What is a saline scan btw? Similar to aqua scan? I had one and fell pg next cycle.

Baking - I agree they always use the chromosome line and that is random - so I am not too convinced on the IVF with PGS just yet but evaluating options.

Just - how horrible ! I hope she is sensitive to your mcs. Does she know about them? I would be hit hard by that too. A cousin just announced her pg and she is due 2 days away from my latest mc. It has hit hard as all the family are now talking about her baby !

Tiny - how annoying about the cancellations. I guess since it is free one cannot even complain. Once you make it past 12 weeks, you can begin to relax and enjoy and hopefully don't need to go for the sessions.

Bootles - thank you for the tips, yes I will certainly be going for genetic counselling. After my blood karyotyping I will be able to see a genetic counseller. But I haven't receive an appointment for the blood test. I was told that they have made an appointment for me, but there is not date/time in the letter. I guess I will receive a separate letter for this?

Cloud - hope your throat gets better. Its nice and sunny this afternoon here, that has got to help.

In terms of Raj Rai recommendations - basically i wrote to him and he said "I could consider IVF +PGS". He said that factors which influence prognosis after 3 of more mcs with chromosomal issues include maternal age and 'others'. Who knows what others is. He said if i wanted to know more about IVF+PGS then I can book an appointment with him - which I am not doing as I saw him privately and I can't pay to see him. I will be referred to St. Mary's via my GP now anyway, so I will wait for that. I am personally not convinced about IVF + PGS and hoping that it was a random accident. Next step for me is really to wait for karyotping and genetic counselling. So don't think I can ttc for some time. Also the IVF would have to be self-funded as we have a child already, so again I can't think of it frivolously. I will let you know if I find out more information. The problem is - as for most of us that we don't know about first few mcs and only have had mc 3 onwards tested. So difficult to take a conclusive view.

Given all this - I wonder if there is any point in seeing the Coventry team? I have bigger issues perhaps.

A friend of mine keeps suggesting chinese herbs and now those don't seem like a bad idea compared to IVF !

Thanks baking. I should still be here on cd 1 and may be back by 7 dpo. Will need to check calendar.

I have technically had 3, triple, but one was a chemical. All very eaely gestation but two missed (one by more than the other).

Saline scan is to pump uterus full of saltwater and check shape of uterus. Apparently it showed v slightly arcuate on last scan so is to check that out, though doubt it is the cause tbh. Is that the same as an aqua scan?

I agree could be random. Even if age related doesn't necessarily mean ivf is needed. Is a numbers game.

Longest - Indeed it is a numbers game at the end.
I think saline scan is the same as aqua. Good luck!!

Charlie, yes, hbs were normal, as far as I know.

Charlie 3 of my 4 MCs had HBs (one not scanned until miscarrying) which is unusual, normally if you get a decent HB then you're about 97% likely to get to term. Most embryos with chromosomal problems will die before they get to that stage, though they may be missed MC and so appear to happen later in gestation. There are some trisomies that only become apparent later on in gestation ( Downs, Edwards, Pataus, Turners )
"Faltering growth" was the way my Mcs seemed to go, they'd develop a HBs a bit behind schedule and it would get weaker and the'd be growing but further and further behind dates at each scan before final demise at about 9 weeks. Prof Q was. pretty confident that was an NK cell issue, but I know others who have had multiple v early losses associated with it, and I've heard it can cause second trimester losses too.

I feel your frustration, all of you! I so wish everyone got a clear answer, not all this stumbling in the dark!

Thanks baking and just for sharing. I'm still really haunted by my second loss. MC1 was so simple, I started bleeding at about 7.5 weeks, and at that point I knew. Baby was small, I MC'd 2 days later. The second one is really emotionally painful still. At 8w the scan showed a very very slow HB, so it never had a chance. But my hormones later that week were still going up (but not doubling) and it wasn't until 1 week after the first scan when the 2nd scan showed it had died. I'm obsessed with knowing what day it died, although I never will and it won't help in any way, obviously. I'm finding out the results of the chromosome testing in 10 days so at least that will be some indication. I just wish I knew if there was anything I could do to make the next one more likely to survive. The NK thing scares me, because before I'd find out I'd have to have another pregnancy, MC again then wait ages to get tested. But I don't want to go the private route because I've convinced myself that perhaps I just have bad luck and the next one will be fine.

On the positive side I just typed all that without crying, so I'm obviously beginning to heal emotionally...

my third had 174 BPM at 9 weeks. I think that's normal? it seemed good at the time. Take care of yourself, Charlie. xx

mine was 62bpm at 8w (although measuring 6.5). Poor baby. Amazing to hear though, I still can't believe dh and I managed to create that.

So sad reading your stories of heartbeats. That must be hard to let go of. The only scan where I have seen a heart beat was with dd and I tell myself it's a good sign that all my miscarriages were so early but I have no basis for thinking that really as have no idea what it means, stats wise.

Charlie. You sound a bit like me. I think I held things together pretty well after my chemical and mmc but the latest one knocked me for six. It's the sudden entry into a new world of fear, medical terms, being on the wrong end of the stats and general alienation from everyone else in RL who may have experienced miscarriage but not recurrent miscarriages, I think. If it is any consolation, I am feeling better now it has been 2 and a bit months since my mc. I read your posts and recognise the grief but it doesn't grab me in the heart in quite the same way it did a month ago. I am healing, I think. Who knows how I will feel if I have another mc though? It is very scary. You have to keep positive to pluck up the courage to try again but it does leave you emotionally vulnerable.

Does anyone know if pcos or ovarian cysts would have been picked up if both mcs the doctors have moved the scan thing over to check out my ovaries? I'm trying to rule things out in my head (just call me Dr Charlie, almost as bad as Dr Google)

Thanks lurker
It is ao nice to feel I'm not alone. I don't know anyone my age who has had multiples in RL just my aunt and when she was having them they knew hardly anything! Although she had 3 healthy children which is reassuring.

Hey Charlie I don't know about pcos but they checked me for cysts after all my MC - you have one called the corpus lupus (I think!) that supports the pregnancy early on and that can be quite painful depending on the size of it but it's usually absorbed after the pregnancy and I know they looked quite carefully at that as it's a kind of cyst. They checked both of my overies, when they looked for a hb and following the ERPC's. It seemed pretty standard - they also wrote the findings on the sonographers report so you should be able to a check it there. Hope this helps!