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)

sophie congratulations on your bfp. And I'm sorry for your previous losses. There are quite a few of us currently pregnant and an ever growing list of thread babies. It's a difficult time being pregnant after mc so its natural to be feeling anxious. My best advice to you is to just take things one day at a time and remember every new pregnancy is different to the others and your chances of this one working still exceed the chances of another mc. There is a really supportive pregnancy after mc thread on the pregnancy board which you might also find useful. I hope this one is it for you.

peq the injections are a pain but you'll get through it when the time comes. Trip to Asia sounds exciting.

flen sorry things are a bit stressful. Good luck with the move.

Hi everyone

I was on this thread a while ago but couldn't keep up! Have name-changed since and can't remember the name I used on here last time, sorry.

Anyway, I'm popping back for some advice and to unload. Hope that's ok?

I miscarried a frozen embryo pregnancy last autumn (at 6 weeks) and our first ever natural pregnancy was lost in June (at 9 weeks). GP agreed to refer me to RMC. I have been on metformin (for PCOS) since the start of the year and also took Clomid in March and in July.

We had decided to try naturally for one more month in August (the month after the Clomid month, as I'd got pregnant the month following Clomid the last time) before looking to go to Coventry for the NK cells test, before then doing another frozen embryo cycle. I got a BFP on 4 September. Stunned! And scared! I was barely 4 weeks pregnant at that point. As per the GP's advice after my 2nd MC, I went straight to see him and he prescribed progesterone supplements (2 x pessaries daily) and 75mg aspirin daily, and to continue with the metformin, all on the advice of specialist at EPAU/RMC at local hospital. Bloods I've already had done since the 2nd MC (thyroid, serum folate, serum B12 & HbA1c glucose) were all normal and I decided to go ahead with other blood tests that were planned so were knew of any issues before doing another frozen embryo cycle: basically clotting disorders (antiphospholipid and lupus anti-coagulant, I think?). Blood was taken today and I'll get the results next week.

I've read up on aspirin and it seems to be that the general consensus is that it can help or do no harm re: miscarriage. I found just one study that suggested a link (though not necessarily causal) to miscarriage, yet I know some experts say you shouldn't take it unless you have an identified clotting problem.

Any thoughts on aspirin, how to not explode with worry and stress and anything else I've posted about. I'm trying to to think about the pregnancy at all, aside from not drinking alcohol, thinking about which foods to avoid and taking my meds. Just hope this one sticks though not sure at what point I would actually enjoy a pregnancy now.

Lovely to see some encouraging news from others on here too. x

Just read back through the thread a bit and want to say 'Hi' to forestnest and Monten. My son is a result of IVF at King's and my initial fertility investigations were at Lewisham. x

Welcome sophie and didwedo, and congratulations on your bfps. The first few weeks and months are particularly stressful and not at all enjoyable in my experience. I'm now 12+1 following 5 mcs and just starting to feel a little hopeful that it might work out. The aspirin question is extremely controversial. The latest research paper states that it can actually do more harm than good in the absence of a clotting disorder, causing issues with implantation, and some specialists (coventry implantation clinic, St Marys and various rmc around the country) now advise against it unless you have clotting or other relevant issues. But other specialists (dr shehata is the one that springs to mind) don't agree with that research and still prescribe, plus a lot of local docs don't seem to have read the research and follow the old advice of 'can't do any harm'. It's a really hard one that we've debated many times on this thread. Some docs say it's fine after 10wks when the placenta is mostly formed. I can't advise you what to do, but i would make sure you read the research before making up your mind (such a pain that we have to do our own research on all this! !)
As for getting through the first wee while, I'd agree with taking it a day at a time. I felt very detached and i think that helped (although i do worry about feeling that way). It also helped me to write down a list of all the things that were different about this pg, as i found the negative thoughts frequently took over and i forgot all the positives (things like a nice strong, increasing line, feeling sick, being on various meds, new egg, sperm and lining, etc). Regular scans also helped keep the anxiety at bay, but mostly this thread and the fb group kept me sane!

Thank you, Marchgirl I think I will remain as detached as possible to get through the next few weeks. It might also make the time go quicker, I am also starting a new job so I am hoping that will be a welcome distraction! Did you do anything different with this pregnancy than the previous? I am sorry to hear you have had 5 losses, I don??t know about you but I even when I say to people iv had 3 it feels like I am talking about someone else! I will try to write down the positives too! I often think although it??s a new egg and new sperm its still me and what if I am the problem! I know my basic tests have come back ok but I cant help but worry ?? I too have been advised to take asprin by Dr penman who worked alongside dr regan who leads the research into recurrent m/c and although I have advised him that all my tests have come back negative he has still advised to take it, so at this point I am comfortable to do so but like you say, others might want to look into it further. Unfortunately I think there are a lot of unanswered questions surrounding this! ?? Congrats on being over the 12 week mark, I cannot imagine that day when I see my baby on a screen it just doesn??t feel like it will happen!x

Thank you all for your congratulations. Still in shock.

Lots of hugs and positive thoughts to those struggling. It's the wickedest of all wicked things. The only thing I have ever gone through that the passing of time makes no easier and in some ways it makes it worse.

Amazing scan news march - couldn't be happier for you xx

Just quickly popping into say one top quality blastocyst now on board and two more in the freezer. Lining is a bit thin so put me on a couple of new mess so I am now on the concoction of:
Cyclogest pessaries twice a day
Progynova tablets twice a day
Clexane injections in evening
Gestone injections (in my bum :() in the evening
Just had acupuncture so really don't think there's anymore I can be doing!!

Welcome back peqpit and congratulations on your bfps sophie and didwedo.

Hmmm advice for getting through the early stages of pg after mc...? It's feckin awful! Don't get me wrong I'm am soooo grateful to be in this position but the wks before the 12wk scan were so tough and I was so anxious. I had 4 scans prior to 12wks, the first 2 were really tough, then the next 2 I went in feeling okish. I'm not sure I could have managed getting to 12eks without them though, I would've been a wreck as it would have allowed the anxiety to build up too much.
I also did a list of things that were different to the mcs which helped remind me it was different.
I'm now 15+5 and was on the Coventry protocol for raised uNK cells same as march (so I highly recommend going there ).
Re the aspirin debate, prof quenby advised me to avoid it til I was 10wks (despite having fvl).
I agree it's very confusing and doesn't help when experts have differing opinions.
Good luck, and fingers crossed this time is your time. Hoping you get your BFP cry soon peqpit X

Thanks BumbleBee0! I hope so too :)

Floweroct2 I have also been seeing an acpuncturist and osteopath. The acupuncturist is specialised in infertility and recurrent miscarriage so I thought it would be worth a shot. It's very strange but I like it! Hopefully it is doing something!

Glad it went well flower. Hoping you'll be getting a BFP next wk (if that's the right timing) and your frozen ones might be dc2 or 3 down the line if you choose to. X

Thanks everyone. YEs, bumble, the differing advice on aspirin a so stressful! What's FVL btw? Also, how did you get your scans done pre-12 weeks? Were they done privately? Were they done because of any symptoms or because of your history. I asked my GP last Friday if they would scan me early this time and she said no.... :( MIght have to look at getting a private one done.

Good news Flower. I had IVF for my son and he was a 5 day blast transfer. Keeping everything crossed for you. Would recommend the Zita West IVF CDs for the 2WW. x

Hi ladies. Have just been lurking over the last few days.
It's really encouraging to see there have been so many thread babies and many of you are pg - congratulations!

Brief stats
34 DP 38 TTC #1
3x very early MC at 4-6 weeks in Oct 14, Nov 14 and Sep 15
Have hx of psoriasis and psoriatic arthritis
But negative for APS, thyroid and other regular tests.

Having read more about Coventry and relevant papers on uNK I think I fit into the profile of women with raised uNK cells so am really keen on going there.
But I feel a bit ambivalent about having to wait and not TTC for 3 cycles. I just want to get on with TTC - 3 months seem like such a long time. But also don't want to end up having another mc and wasting even more time. Would like some advice from those of you who have been to Coventry. What's your experience of it like? What would you recommend?

Fvl is factor v Leiden, a blood clotting disorder (although I am only heterozygous which apparently affects 1 in 20 people and it doesn't increase chances of a clot as much as being homozygous). I needed a location scan before starting the clexane (as per Coventry protocol) which my local epu did. I'm also under consultant led care due to taking meds so I think this combined with my 2 mcs and because I was clearly very anxious at the scan, the epu nurse organised a reassurance scan every 2 wks (although I caved in and had a private one too). I think giving reassurance scans vary by location which is a bit pants, but I would expect nearly all to offer them after 2mcs.
Sorry that's a bit waffley but hope it helps! X

Hi gakay, sorry for your losses. I think it's only 2 months post mc (and 2 cycles) that's required rather than 3. I struggled with waiting to ttc when I went to Coventry but I'm so glad I waited and went. (I had raised uNK cells so I've been on their protocol with this pg). I would definitely recommend going to Coventry.
It was great to speak to prof B there who was very positive, enthusiastic and passionate about researching rmc and helping us ladies. Many ladies on here who have found their own consultants 'lacking' in enthusiasm found it quite refreshing. If you have elevated uNK cells you will be recommended to take low dose steroids from BFP to 12wks. Coventry send you a letter with your results and treatment plan which you then show your GP/constant who will (hopefully) prescribe them for your next pregnancy.

I would also expect a reassurance scan around 8 weeks after 2 or 3 mcs (think it depends on the area), so it seems a bit mean to not offer you one at all. My epu nurse actually said to me after 2 that i knew how to get scanned if i needed it (with a wink), but i don't know if i would have felt comfortable with that. With this pg I ended up with scans at 6, 7, 9 and 10 weeks because i am classed as high risk after all the mcs and because of a haematoma seen on the first 3 scans (another random cause of mc!). I'm on progesterone, clexane (heparin), and steroids for high uNK (uterine natural killer cells) diagnosed at Coventry.

I would absolutely recommend coventry. I'm convinced i wouldn't be here without their treatment. You need to have two afs after mc then you call when you ov and will be seen 7-10 days later. Although the waiting is a total bugger, I'm glad i waited. I actually wish I'd gone after mc 3, but just had hope that I'd be fine next time. When i mc'd for the 4th time, that's what decided me on going. I always wonder whether i might have avoided that 4th one (although it's impossible to know, as i went on to have another early mc after coventry, just before this pg). Just their attitude and positivity is worth going for, and you only have to visit once, everything else is done by phone and email.

flower, great news on your little blasty. You are officially PUPO! Sounds like you've done everything you can. Really willing your little one on xx

bumble and march thank you for your advice. Think I'll try to wait patiently and distract myself with other things.

bumble I thought I have to wait 2 cycles post mc then at the 3rd cycle call on day of ov but still not TTC so wasting 3 cycles? Or can I call on day of ov at 2nd cycle?

Sorry gakay, yes it's 2 cycles but then one for the biopsy so 3 in total.

Hi. Iv had some light cramping today.. being only a few weeks in im freaking out im going to lose another one. Im due on in a couple of days

I had a lot of cramping on and off for the first 8 weeks or so sophie, and also had cramping with breakthrough spotting around the time my af was due. It's quite common and doesn't have to be a bad sign, but i know it's bloody scary. Big hugs. Just take it a day at a time xx

Hello,

I've actually lurked on this thread for a while but after a positive hospital visit today thought I'd finally join in.

Brief stats: started ttc in 2010.
Have a bicornulate uterus with a full septum
One very lucky dd (2.5)
Six early mc between 6 and 9.5 weeks
One 14 wk mmc (heart stopped just after 12 wk scan)
One 17 wk loss
Currently 7 weeks pregnant and everything crossed!

I've actually been referred to a new consultant this time around and have just had a fantastic couple of hours at the hospital. She's a lovely woman with a great team that were so nice to me. First consultant I've felt actually cared. She gave me a hug after reading my medical history and said its one of the longest she's had to put on a form!

She's gone through lots of things she can do for me that no one has ever mentioned before! Extra scans, stitches, injections etc.

I've also joined a study called 'prism' which is testing pregnancy outcomes of people with multiple mc's when they take progesterone for 16 weeks. I've got a fifty fifty chance of being given placebo instead but at least it feels like I'm doing something.

Looking forward to catching up on everyone's news!

XXSOPHIEXX I know it's useless saying don't worry but sometime your body just likes to mess with you!

I went in for my scan today expecting to have nothing in there. I'd had terrible backache, cramps (sorry for tmi but clots) and heavy bleeding that suddenly stopped.

I nearly fell off the bed when she said there was a string heartbeat!

Through all pregnancies I've had spotting and cramps around the time of my period though, it seems quite common. I usually end up sticking stand up on, it really distracts me from analysing every twinge! ( At least for an hour anyway )

Welcome happy, I'm so sorry to hear of your losses, it's heartbreaking. You have had a really tough time to put it lightly.
Congratulations on your pregnancy and great news on seeing the hb.

Your new consultant sounds ace. And how lovely of her to give you a hug, I bet that meant a lot. Sounds like she really cares and wants to help you get your baby which is great.

Presumably you've had all the standard NHS testing? Are you on any medication or is it restricted due to taking part in the prism trial?

sophie I hope the cramping settled soon and puts your mind at ease. I know you know already but lots of people have cramping and its fine.

Hi BumbleBee0

I'm afraid I had no tests apart from a 3d scan a few years ago where my old consultant (after the first three miscarriages) just basically said 'Well it's your uterus, it will probably be very difficult to have a baby.'

He wasn't the most useful man I'd finally had enough of him when he didn't even bother to read my notes faxed over to him from the hospital out of town where I'd had the 17wk mc. I transferred to a different hospital and consultant after I complained.

My new consultant was quite angry I'd slipped through the net so to speak. She said there were all sorts of tests and things they could try. I can't remember exactly what they were, my head was spinning a bit at finding out I was still pregnant! She just said there were medications they could try after the tests. She didn't mention any conflicts with prism.

I got hugs off the nurses too, it was quite a culture shock compared to my old hospital!

Oops forgot something from the stats, me:28 dp:39

Your previous consultant and the care you received sounds terrible happy, thank god you transferred, sounds like you're in good hands now.
Will your new consultant be carrying out any tests?
I've also had hugs from nurses during my mcs, they were lovely.