Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

[forestnest]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

bumble caremaps are the process of watching embryos develop through an embryoscope (meaning you don't have to take them out to look at them, they're just constantly filmed). Care have tracked thousands of embryos and their success rates and built an algorithm to decide which embryos have the best chance - it's not necessarily the best developed at 5 days, it might the one that looked best on day 2 or went to blast first or whatever.
Embryo glue is pretty much just that - something that helps the embryo stick!
Calcium tablets are because heparin can cause bone problems in later life, so it's to counteract that.
My brownies have 4 eggs in them. Eggs = protein = good for eggs .
And yes, it annoys me how the common perception of IVF is that you toddle to the clinic and they take the eggs out, pop them in a test tube with the sperm then pop them back in again - simple. It's a bloody horrible process and depending on the protocol can drag out for a 7 week emotional and physical rollercoaster. I'm considering blogging through this cycle to document it. The counsellor said writing might help. She probably wasn't thinking of a blog though...

floweroct surely at your booking in appointment they'd book you an early scan? Have you tried asking your gp?

Just popping in to say a quick hello! I've not posted for ages, but I'm still reading and cheering you all on - it's not long ago that this thread was my lifeline.

barking I agree that, sadly, many people have no idea what IVF involves, and all the hoops that you have to jump through. So much mystery still around it. I think you are an incredibly brave and determined lady to stick this out!

flower I agree, getting to 9 weeks is great! Remember that every day your chances of a good outcome are increasing. Chase the midwives, if they don't get in touch, booking apts are usually around 8-10 weeks, to give them enough time to get the 12-week scan sorted. Def try to get another scan - both my midwife and the GP were very supportive when I asked if I could get one.

As for me, I am now 30 weeks. It still seems so surreal, and I struggle to believe that I might be meeting this baby in 2 months' time (if we go with the ELCS). I never thought I would get this far, but after the horrible first trimester, my anxiety started to go down bit by bit (in spite of a few setbacks), and I have finally started to enjoy the pregnancy. Not like a first-timer or someone who has never had a mc, but still. I sometimes feel sad that it has taken me so long to get to this point, especially as it is most likely my last ever pregnancy, but there is nothing that I could have done about that (well, OK, maybe I could have gotten more counselling...). Trying to make the most of it all now.

Anyway, wishing everyone a sticky bfp as soon as possible!

That's really lovely cloud I'm so glad there's some enjoyment in it for you. Perhaps it's even more meaningful given what you had to go through to get there?

Flower, one of my friends is now 10 weeks after 4 mcs; her unit have been practically giving her weekly scans as she's been terrified. Can they offer you any reassurance ones too if you try?

Meanwhile my doctor just shrugged me off yesterday, said women do miss periods, especially when they're anxious about TTC, and not to worry. She also said the test was probably wrong rather than an early mc, although looked at the photo and agreed it looked like a light positive. That there was nothing I could do to bring on a period, although I was welcome to look into acupuncture

The weird thing is that I get what she's saying, but we've been so relaxed these past few cycles - haven't measured anything, just gone with the flow, timed things every other day and taken it as easy as possible. If anything I'd say this last one was my least anxious ever - gah! Need it all to be over and onto the next cycle now.

barking a blog sounds like a great idea, you should go for it, even if it's just helpful to you to write it down. It would be great for people to read too if you felt able to share it.
Aaah, I've seen YouTube vids of eggs being fertilised and growing.
I imagine all that messing with your hormones is so difficult to cope with, and I don't think people even realise this aspect of IVF happens.

cloud woo hoo for 30wks!! I expect the last month over Xmas will fly by. It's good to read you're enjoying it now. It's sad though how mc destroys that naive enjoyment which you never get back.

flower I'm surprised too they've not offered a scan. I think most epus offer fortnightly scans after rmc so definitely worth trying.

kacie urgh your GP sounds useless. How can she say the test is faulty (when you can't get a 'false positive' anyway) and then agree it's a faint positive. I think it's fairly normal for mcs to screw up your cycle (known as wtf cycle) so I think it's just a case of waiting for af. Lots of women on here are great fans of acu for normalising their cycles so might be worth trying. Sorry that's not much help when I imagine what you want most is just for your body to return to normal. Hope it does soon for you x

Sorry you're still in limbo kacie. It's awful. You weren't on progesterone or anything were you? It can take a few days after that. GP is speaking shit. Really annoys me when they say things like that. Don't know whether you read it but about a week ago someone posted in the ttc section a link to a post on another forum where some kind of scientist (male) replied to someone about false positives / evap lines, basically saying they were a load of rubbish (but much more eloquently and scientifically! ), that a line is a line. It was the most brilliant post. And I think you know it was real. Just so wrong that your gp is trying to persuade you it's not. Completely unhelpful. I really hope it sorts itself out soon, but as a former cynic, I now agree that acu might help.

cloud, really glad you're starting to enjoy things now. It's nice to hear that does happen eventually!

I agree that is really good to hear about the ivf process barking. You have to put yourself through so much to get there. You are one very strong person.
Hearing more about the process also gives me much more appreciation for my friend that had two ivf babies. I knew a small amount of the struggle they had, but definitely understand it better now. Thank you x

Hello. Sorry for such a long absence. I wondered if I could update you. I have one ds aged 6 and I turned 40 in February. After my successive 3 miscarriages, all different 'sorts' and without treatment I fell pregnant a year ago. I was in hospital at 16 weeks with pneumonia and sepsis. It was a long and nervous pregnancy. On the 31st of July, just before midnight and after a wonderful labour I finally welcomed baby Betty into the world. I really did call her Betty (Elisabetta) :) I still pinch myself. I still can't believe she's here. l see her sleeping and remember how many times my heart broke whilst longing to get pregnant, hoping it would stay the course or dealing with a loss... not to mention seeing all the pregnant ladies and babies about. I was on edge for months, waiting for it to go wrong somehow. Even now I wonder if my 'luck' will run out. Aware of loss, it was in some ways, at some times, a muted celebration as once you know what it's like to go through pregnancy loss, you never forget and are always aware that others are going through the same. But so far we're happy, healthy, incredulous and incredibly grateful for our daughter. Wishing everyone love and luck and big hugs for where they are in their story right now. Betty and Baby Betty xxxx

Oh betty, it's so lovely to hear from you and hear your happy news. Love these success stories, it gives us all hope. Glad you're enjoying time with your little lady betty and thank you for updating us. Take care and best of luck for your happy lives ahead xx

Hello all.

After hearing Betty's news (hurrah!) and seeing Cloud's update I thought I would pop back on with a bit of an update. Lots of lovely ladies who I do know very well on here but lots of newbies as well

Well I'm now 26 weeks which I can't quite believe.

For those of you who don't know me, I'm 39 and started ttc'ing in April 14 for 1st time. Caught really quickly, but then sadly suffered 3 x mcs in a row.

May 14 at 5 wks
August 14 at 9 weeks
December 14 at 9 weeks (on New Year's Eve I might add!!)

After mc 2 I begged for help from Birmingham Women's and was told a flat no, not even with my age.

With MC 3 it was a mmc and in fact we'd actually seen a hb at 7 weeks to be then told at 9 wks we'd lost the baby. Had to have ERPC's for mc. 2 and 3

I then found this amazing thread and these fantastic ladies and found out about Coventry. Went and saw the amazing Professor Brosens and had my scratch and found I had a really thin lining.

So I started acupuncture to try and improve my lining and I'd now moved to Worcestershire and was under Mr Watts at Worcester hospital and a bit of an rmc guru.

I had all the tests, nada. Bugger all wrong with me. That was even worse. Losing 3 babies for no reason at all.

Mr Watts performed a hysteroscopy on me to make sure no adhesions and that everything was ok and he agreed to follow the Coventry protocol of progesterone and clexane.

So I had a 4 month forced break which was agony but actually by the time we could try again, I was "ready".

First attempt of trying after mc 3 and all my tests we got a BFP....

So I'm now 26 weeks with a baby girl on the way and like Cloud, I still can't believe it. I'm absolutely terrified. I've had a few issues with my cervix, heart and my liver but have had outstanding care and everything has been resolved.

My care was transferred over by Mr Watts to another consultant with full explanation of my history. I stayed on progesterone until 12 weeks, and clexane until 20 weeks and now aspirin until she arrives.

I'm having an elcs simply because I'm too bloody frightened after everything we've been through. I'm terrified of still birth, damage, you name it. I have no confidence in my body and my ability to give birth. So for me pregnancy is a means to an end.

But when I feel her kicking, I can't believe how far we have come and think to myself "shit, we might actually have a baby "

Rmc has totally changed my outlook though, i reached depths of pain and darkness it never knew possible but this thread kept me going.

So I just wanted to come on and give an update - I hope I haven't upset anyone, I know this is a safe place and I'm willing you all on.

All I want to say is "don't give up" they couldn't find anything wrong with me, but I still got there in the end. If you are thinking about Coventry , go!!!!!

Big hugs to you all. Rmc is a horrible place and it's still very fresh in my mind

What a lovely post brummie

Great news Betty! The best kind that keeps us going.

Thank you for your update Betty and welcome little Betty.

Good to hear from you too Brummie and glad all is going well!

I'm just hopping on too. brummie and betty and cloud, so amazing to hear from you and hear those stories with hope. So important.

flower keeping everything crossed for you. 9 weeks is great, although I know there's no way it's possible to feel that! Hang on in there.

barking writing my blog was one of the most helpful things I did post MC3, I really recommend it. The actual process of writing helped me express my thoughts and feelings, but it was also so helpful to get feedback from people reading it. I felt much more connected and understood, both within myself and with others, if that makes sense!

All is still ticking along here. I'm 22 weeks tomorrow and continually amazed that I got here. The anxiety began to lessen after the 20 week scan, and feeling movements is very reassuring. I honestly didn't think I would ever get here, and I have. So keep going everyone, just hang on in there. Hugs to all.

22 weeks Flen that's amazing!!!! Finding everyone's updates really positive

Hi ladies, may I join you? I had my second miscarriage three weeks ago and have an appointment at the recurrent miscarriage clinic in Liverpool later this week. I've been referred after two miscarriages as I can only get pregnant through ivf. We've been trying for 4.5 years and in that time I've had two full ivf cycled and two frozen embryo transfers. I got pregnant on my first ivf but at my 7 week scan I was told it wasn't growing properly. The epu scanned me again and it became a suspected molar so I had to have erpc. After a lot of chasing I finally got the results and was told it wasn't molar, but I still wonder what actually happened, as obviously it didn't look anywhere near normal on the scan.

I then had two frozen embryo cycles, both of which failed.

Fresh IVF cycle this summer resulted in bfp, I started bleeding at 7+2, on the morning of our early scan. I passed what I think was the sac before the scan, and the scan confirmed that my uterus was empty.

I have autoimmune hypothyroidism, and was on steroids during this ivf cycle which was supposed to help.

I've known people go to Coventry for the nk biopsy for implantation failure, do you think it would be worth me doing this as well as the recurrent miscarriage clinic? Does anyone have any other advice or suggestions? Thank you.

Should maybe have said, I'm 36 (for another week), husband is 41, and we have two frozen embryos from our recent cycle, and we're planning to do a frozen embryo cycle early next year.

Welcome flipper, sorry you find yourself here and to read if your tough journey.
Re Coventry, they recommend prednisolone for high nk cells (mine was 20mg to 12 wks incl tapering off) so if you'd already be taking this it might not be worth getting tested.
However, they tend to recommend progesterone and heparin regardless of the nk cells result for other benefits they offer. So it may be worth considering these meds too if you've not tried these this time. Also, a friend of mine went there (who is going through icsi) and they recommended treatments in relation to this which were different to what her clinic had done previously, so may be worth seeing the professors there for their opinion. Sorry not sure that's much help on deciding whether to go or not!
I don't know much about treating thyroid (hopefully someone who knows more will be along soon) but have heard about levothyroxine?

I hope you have some time currently to look after yourself and take it easy. xxx

So glad I had a peek on the thread this evening. Betty I pass the most recent baby baton to you and baby betty. So glad to hear you are both doing well. If you are up for it there is a lovely thread with pictures of the babies who have come out of ladies on this thread.
cloud I am absolutely thrilled for you. A Christmas baby! Noel/noella? Good excuse to stuff yourself with mince pies.
flen & brummie I hope you are feeling the second trimester glow and that the anxiety is dwindling.

I am a graduate of this thread (2mc, 1 med term, 1 chem preg) mum to four month old Cissy. I think we have been rewarded for the three years of shit we had to contend with. She is a content and engaged baby, life is happier and easier than I ever thought it could be. I am shocked to find myself now having to consider do we try for a sibling. I am 41 so have little time to play with. So you may see me back here.

The grief still hits me. Two weeks ago we visited the wonderful cathedral in St Albans and i came across the stand for votive candles. I lit votive candles in many churches to remember all my lost babies and as a prayer that one day I would be a mum. And there I was, wheeling my daughter up and down the aisles. I sobbed for a good ten minutes, a mash up of leaking grief and building joy. Miscarriage changes you, multiple miscarriages changes you more. Like others this thread was a lifeline for me. If it was a charity I would have a monthly direct debit to it.
There are so many newbies. I hope you get the help and support I got from the women on this thread but even more I hope you get a happy outcome, whatever that may be.

Hi all, long time no see. I just popped on to see if anyone was talking about the radio 2 show yesterday talking about multiple miscarriages. High nk cells were mentioned a few times with one woman paying £2500 for thediagnosis, ouch.

Haven't looked very far back through posts, but delighted to see a few old faces now pregnant & progressing well, congrats all! I am 30 weeks today after being diagnosed with high nk cell density and starting the first trimester on prednisilone, heparin and progesterone. Def a coventry pompom waver here. I fell into the hyper fertile camp though, so no experience of IVF sorry flipper, always worth giving them a call though.

I do still have talking therapy for my losses and it has been an emotional roller coaster, but to anyone new here this thread is a real lifeline and full of such wonderfully intelligent women ready to share their knowledge & research. I hope you find it as useful as I did. xx

flipper kacie Sorry to hear of your losses- so many new ladies to the thread. You've come to the right place though- this thread has been a lifeline over the last 7 months. So many lovely knowledgeable ladies.

Soooo lovely and optimistic to hear all the success stories (and to hear from people who were just getting their bfps when I started on the thread). Really happy to see everyone progressing so well.

barking really interesting to hear all about the IVF. I hope so much this is the cycle for you. Xx

Just popped on after months away following mc 4 in July. Thank you so much for sharing your positive stories!! brummie my story is similar to yours. In July my plan was to go to Coventry but I've put it off because it's far away, difficult to get to, I'm 42 now..

I was hoping that if I do get PG again I can convince my GP or Ob/gyn consultant to give me clexane and progesterone.... Is this likely to happen or should I go to Coventry just incase?

Lovely to hear you're doing well cloud and betty

Hello lovely-seeming people, can I tentatively peek my head round the door?? I am a bit of a Lurky McLurkerson (and useless at keeping up with threads!) but will hang around quietly at the back if that's ok?!
My stats are: me 25, DH 31
August 2009 - MMC at 13-ish weeks (had seen a heartbeat at 8 weeks, baby died around 9-10) - ERPC
August 2012 - lovely DD, no problems whatsoever, complete breeze
August 2015 - MMC - blighted ovum, nearly 11 weeks (sac measured 5-ish weeks) - started to miscarry at home and then haemorrhaged badly and ended up with an emergency ERPC
October 2015 - chemical pregnancy - just a couple of days ago. Had 4 days of darkening tests (very clear, obvious lines), last test was on Saturday morning at bang on 4 weeks, by early hours of Sunday I was bleeding and have just had my normal period since then.
This chemical has really done me over to be honest. Feels like being kicked when I'm down. Plus my failure rate is now 75% which is pretty shite by anyone's standards. I spose I can at least get pregnant but I need to actually have a baby at the end of it!
Anyway sorry for moan/essay, hello to everyone!

Welcome flipper, and sorry to hear of your losses and ivf failures. Glad you are getting referred for some testing. Can't flick back but i think you said you're going to Liverpool. I gather prof quenby either used to work there or has strong links back there, so they should hopefully be supportive of a coventry style treatment plan. I am also a high uNK patient, so for me, it was well worth the visit to Coventry as I'm now 19+3 on their treatment plan. I think I'd be tempted to get everything tested that you can before using your frozen embies, but you could at least have a chat with them first to help you decide. They are very supportive but i have no experience of how they handle ivf patients. I imagine barking will be on at some point and will be able to give much better advice about the ivf side of things, as she is a fellow ivf person (and also high uNK, though not through coventry). If you are doing coventry I would suggest doing it the month before your next transfer, as the benefit of the scratch can help implantation. Good luck x

Welcome four, but sorry you find yourself here. No need to apologise for anything on this thread. We're here to listen and help where we can. Sounds like you've had a very difficult journey. I also have a dd born in aug 2012, then 5 subsequent mc before this current pg on the Coventry protocol for high uNK. Have you had any testing? You should definitely qualify for being referred to your local rmc if you haven't already and I think it would be worth getting tested there for the basics. Many of us have been to the Coventry implantation clinic on top of that (if you've been lurking you might have heard about it before). We have a link to a spreadsheet with some testing options on page 1 of each thread on the same post as the stats. If you have any specific questions then feel free to ask anything

Omg. What a morning to come on! Lovely to hear from some old faces (belle, jady, annie)

belle, so pleased to hear you are loving motherhood so much and that cissy is so wonderful.

jady, great to hear from you again! 30 weeks is brilliant. You sound really well and hopefully the anxiety has calmed a little. Delighted for you being where you are x

annie, nice to see you back again. I swithered about going to Coventry after mc3, but decided not to go. I think for two reasons, firstly because I wanted a back up plan if it went wrong again, and also because I really wanted to have faith that the next one would work and it felt like being negative (as well as the faff of getting down there of course!). After mc4 I regretted not going earlier, as i then had to wait a few months to go. Perhaps I'm biased, as I'm obv saying this is all with hindsight, as my high uNK diagnosis made me feel like i could have avoided mc4 (probably not, as it was very early). I'm not sure how i would have felt if it had been normal, although lots of people still swear by their treatment even with normal uNK. I had managed to persuade my consultant to prescribe the clexane even before coventry, after emailing her with some research papers I'd read on the cytoprotective effect, but she refused the steroids (gp eventually prescribed them), despite the treatment plan from Coventry. I think it's unlikely that anyone would give you steroids without a diagnosis, but you should be able to get progesterone on a just in case basis and may be able to persuade them about clexane as I did (depends on your consultant and your persistence!) Have you been actively ttc since the last mc? The other benefit about coventry is the scratch, which is supposed to renew/thicken the lining, and apparently can improve chances of a pg sticking for 3 months.

We are also now on FB. If anyone wants to join our FB group then just pm me your name and a description of your profile picture and i can add you as a friend then add you to the group.

Phew. Mammoth post

No testing marchgirl - was under the impression you had to have 3 consecutive mc before they do anything? Congrats on your successful pregnancy and sorry to hear you've had a bumpy ride to get there!
Will definitely check out the link/options, thank you! Have only skimmed first couple of pages and last couple of page of this thread so a bit behind!

Hi four. Yes, strictly speaking there is a three in a row rule (a bit of a silly rule if you ask me), but several people have managed to persuade them to test after only two, or after three that weren't consecutive, so I'd be pushing for it if you have the strength to do it, particularly if you have other factors like difficulty getting pg. You could mention the stress/anxiety you might be feeling at the thought of another pg as a reason to get some testing done.
Coventry will see you after only 1 mc if that's a route you are considering. It's £360 all in, but they only test for the uNK cells, so you'd need to do the standard nhs testing alongside it.
If all that isn't for you, you could see if your gp might carry out a few basic tests for you. Many have had success with this, to rule out a few things, and some have even had the usual clotting testing done through their gp. They may also agree to prescribe progesterone for your next pg.
It's pretty awful trying again without feeling like you're doing anything different, so even ruling out a few things might help your state of mind, but there are also several success stories on the thread without any further treatment, so don't give up hope x

So lovely to see all the positive updates!

Welcome to the newbies and sorry you find yourself here.

barking I am all fingers crossed for the next few weeks for you. Please keep us posted as to how it's going.

Am, I had second scan today and everything is progressing as it should. Obviously, that means nothing as previous experiences have proved and since the scan this afternoon, I don't feel as nauseous as I did so have decided it's probably all over already. The scans are done by my EPU as 'early reassurance' scans but I'm only going so they can pick up if I've had another mmc. Is this horribly practical? Am just trying to stay as completely detached and neutral as possible as I think this is the only way to get through this.

Hugs to you all. Xxx

Welcome four and sorry for your losses

Lovely to hear updates from you all.

Big hug pop, I found the early scans horrid and the first 12 wks or so, so hard. It goes without saying that it must be a different level of hard for you though, after what you went through. How many wks are you now? Your way of getting through it sounds perfect, whatever helps is the right way.
Many of us on here have had waning nausea and it was all ok but I'm sure you already know that this is possible. I'll be thinkingabout you over the coming wks and months. xxx