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)

Hi texta, no problem. I actually had my booking in app with mw at GP surgery at about 4.5wks. This was so she could refer me for a location scan asap (and I wasn't at our local hospital otherwise the app would have been onsite). I decided against going to the same epu as the mcs, but hoping to tfr back for the birth (if it goes to plan). My bloods were taken at 12wk at the hospital after the scan.
I'm sure Coventry would post the prescriptions, they always seem to be as helpful as possible. (I think someone else asked them about it)

Good luck - hope you find a good Dr over there and get everything you need.

HI Everyone,

Hoping you are all well, congrats Tetra on your bfp! I am 3 weeks today (or 4w2d if you work it out from my last af) there were only 2 days last month where we bbd so I know to the day when it would have happened!
I went private after my 3rd m/c and my doctor advised I take low dose asprin from my next bfp which I have done (strong positive from a week before af was due which surprised me) but I am having days where I am freaking out and days where I am calm, today is a freaking out day! I have felt quite sick in past pregnancies but I do not feel too bad this time so perhaps I am nervous due to lack of symptoms but I know how sick I get so equally I don??t know whether its worth making the most of it before the sickness kicks in! I had light cramping for a couple of days but nothing to write home about, just a feeling of dread at times. I get quite overwhelmed and don??t think I can go through all this again, then I give myself a kick up the bum! It feels like a lifetime since I found out! if I carry on like this it will be a very long few months!

Can I ask you all about Heparin & Progesterone.. I spoke to my doctor about progesterone and he didn??t seem to keen on the idea but what do they both do? And if it was something I wanted to try how would I go about it?

It seems to be a regime that many people have used and been successful.

x

The progesterone is to support the pg and the coventry clinic use it 7 days before bfp to make the lining more selective. There was a big research trial a couple of years ago called PROMISE looking at using prog, but the results never came out (were due nov 14). I heard the results were not as positive as they hoped. Now there is another trial, PRISM, which i think is testing the use of prog after bleeding in pg (could be wrong on that, but if you google it in sure you'd find it). You could look into that maybe?
The jury is still out as to whether prog is effective or not, but as it is naturally occurring in pg, a lot of rmc consultants prescribe it just in case (mine did). Normally 200mg twice daily or 400mg twice daily, as a pessary.
The heparin was previously only prescribed to people with clotting disorders, as a sort of blood thinner (although i think the actual mecanism is a bit more complicated), but research at Coventry and other places has shown that it also has a cytoprotective effect on the placenta (protects the placental cells) in the absence of clotting disorders, and therefore assists implantation, so in cases where losses may have been caused by implantation or placenta issues (i think losses around 6 to 12 weeks, when implantation is occurring and the placenta is forming, but don't quote me on that! ) may be helped by heparin. You may struggle to get a consultant to prescribe heparin, as it's still a relatively new theory (not yet blind trialled in this country) and not in the NICE guidelines, but it's always worth a bash. I emailed the consultant with some research papers and she agreed in the end to prescribe. It's a daily injection from a location scan around 6 weeks, stopping after 12 completed weeks

Ps. When you say you're 3 weeks I'm presuming you mean from conception?(making you 5 weeks pregnant)

Hi texta
Have sent you a message with the details of a clinic in Barcelona :) Anti immune stuff isn't as advanced here although there is one Dr who is specialised in it but I haven´t been so can´t confirm if he is any good! As they already found the blood clotting issue I have decided to leave those tests for now.

I was told by my doctor to call her as soon as BFP and use progesterone. Am now wondering if I should perhaps start using it now (7 days to go until AF) even though I don´t think I have any pg symptoms (touching boobs constantly to see if they are sore, as that has normally been the giveaway! LOL!)

XXsophieXX - I have been prescribed heparin for a blood clotting issue, I don't think I would use it if they hadn't found anything although perhaps you can try baby aspirin

I´ve read that a lot of people take heparin and aspirin at the same time, I have only been prescribed heparin. Are there any reasons why taking both could be counter productive? Thinking of taking baby aspirins as well when the time comes...

Peqpit apparently the latest research on aspirin in pregnancy advises caution. I'd check with your Dr before taking it. I'd wait until your BFP before starting the progesterone. Good luck!

Hi everyone. Sorry I've been awol, I'm finding the lack of an app a nightmare as I can't go forwards and backwards on my phone on the mobile site, I have to scroll up and down for miles!! So I can read, but replying is an arse unless I'm on the laptop, which I'm not often. I've logged on just to catch up though!

It's our six year anniversary today so I've not got long as should probably divert my attention to dh when he gets home...

Welcome to all the newbies - wow, what a lot of you. Sorry you have reason to be here though .

floweroct I've been thinking of you a lot - how are you doing?

did/peqpit Just adding my bit to the aspirin debate - I was told by the rmc consultant that it could cause mc and not to take it (even though I have been diagnosed with blood clotting issues - factor v leiden thrombophilia). On the other hand, my IVF consultant, who also specialises in mc, said to try it...

hels some people just don't get it, and they just won't, there's no point wasting your breath. Family situations like that are difficult and if she's being like that I feel really sorry for her SiL . Personally, I don't think you've been petty at all!

monten when do your therapy sessions start? I'm going to see the counsellor at the fc tomorrow after a very dark few days triggered by my friend's announcement of being 12 weeks. I've got a few things coming up that I need to be able to cope with, I need some new strategies as the old ones aren't working!

happybeet I can't work it out - what are BMs?!

consider how long it takes to feel less awful varies. Just shared this link earlier and I think it says it better than I ever could. Right now it's awful, but the waves will get smaller and further apart. I found that I got to the point where I felt like I was in control again, rather than my hormones, but then it would hit me without warning out of the blue and I'd suddenly be drowning again.

texta can you call/email coventry and ask their advice?

bumble 12w at the hospital bloods sounds good. not sure i want to go through it for a third time and waste their time.

thanks xxsoph and congrats on your bfp! sorry you're having a freak out day and hope it passes soon and calmness comes along. previously i've only gotten sick around 6 weeks and then its been on and uncontrollable. hopefully time starts to speed up for you (and me). maybe this time will be OK...

peqpit you're a mega gem! i'm finding it harder than i thought it would be to research here, so your rec is a godsend! i

fyi on the aspirin and heparin, st mary's prescribe aspirin for blood clotting disorders and then upgrade it to heparin after bfp based on a when-preggers blood clotting test. coventry don't believe blood clotting has anything to do with miscarriages before 10 weeks, but believe heparin helps in other ways. this doesn't answer any questions, just creates more... also it is my simpletons interpretation that's not really helping...

happy anniversary barking! hope you have a lovely time tonight, filled with wood and sweeties i think are the hallmarks?!! so i emailed prof q and spoke to kerry but they didn't offer posting as an option but i didn't ask! need to be more assertive. for now i've booked to go see them and will ask in person what they recommend! starting to look forward to it...

Hello all. Would like some advice again.
Went to my gynae/fertility clinIc f/u which was a complete waste of time. Was referred there initially due to premenstrual spotting and not conceiving after 2 early mc's but since Ive had another mc b4 the f/u and all my routine tests came back -ve all they said is I need my GP to refer me to the RMC clinic - I had told my GP to but she naively thought the Hosp would do it. So back to square 1. Now my question is which RMC should I go for? I've had all my tests done at Chelsea & Westminster. Or should I go somewhere else? I live in south London. I'm also thinking about going to Coventry so would ideally like to go to an RMC that's not against it.
Thank you.

And congratulations to all of you who are currently pg.

Grrrr. How frustrating gakay. Sorry, i have no advice on clinics, but maybe someone else on the thread will

Do you want to join the fb group (or does anyone else want to join it? ), there are a few more people on there who might also be able to advise.

Hope you had a lovely anniversary yesterday barking. I dreamt about you last night!

gakay I feel your pain. I've experienced both rmc and a long time to conceive between MCs and I feel I've completely fallen between two stools and keep being ping ponged back and forth between rmc and acu clinics. I finally had a referral to the acu, got pregnant, had another miscarriage, and now referral to acu has run out (if you don't contact them in six weeks they cancel it) and have to start again. Anyway sorry to bang on, I don't have much advice - I'm at Kings and the care has been....fine. I think the ante natal care is very good.

Thankyou to everyone for your kind words- barking thank you for that link, its given me a more postive way to think about the way I feel
TMI warning
Back to hospital today as after the bleeding slowed right down I passed 2 big clots and then a huge gush this morning- following a rather uncomfortable internal exam the doctor removed some clots stuck in my cervix and I feel a lot better if very wobbly and a bit sore again! Also managed a nap today which as I've been sleeping about 3 hours a night for the last week was heaven and hoping I can sleep a bit better tonight.

Good luck to everyone with bfps. Gakay hope you get sorted soon- we were lucky to get a referral to rmc through Epu- although the general hospital admin hasn't been great- I've had scan letters, antenatal appointments and a phone call from my midwife asking why I missed an appointment all in the last 2 weeks!

consider glad the bleeding has eased and you managed a nap.
That is really bad organisation of the NHS for you to be receiving all those reminders, and to not even inform your mw!
I got a call a couple of months back about visiting the breastfeeding link worker re. my baby due in September!

consider thinking of you and hoping you get some more rest and relaxing times

gakay I think guys and Thomas's in London bridge is meant to be good for rmc and have comparatively short wait times. You might want to try for Dr she hats in Epsom Surrey as he does some immune testing on the nhs is is v well respected. I've heard he's wuite brisk and you can just see his staff but it isn't meant to be too long a wait. This is probably a weird suggestion but if you can get your gp to refer you for a hysteroscophy now, you won't have to wait for a referal from your Rmc

*shehata (sorry autocorrect)

Gosh a whole day without a post! Is everyone just on the Facebook group? consider hope you're doing ok? gakay it's so difficult when you're stuck between fertility Drs and mc Drs, I'm under three different teams in different hospitals!

So, barking thanks for thinking about me. I appear to have a bfp, tested a couple of days ago but didn't really believe it but it's still positive today on 10dp5dt so starting to trust it now. Trying to keep a positive mindset for now!

Yay!!! So happy to hear your news flower, that's fantastic! Keeping fingers, toes and everything in between crossed for you xx

Hello, I've been away for a few months since mc in June. 4th loss, 3rd at around 8w8d.

Marchgirl so happy to hear you had a good 12 week scan! Do you mind me asking if think it's down to being on the Coventry protocol? I was all set to go there but it's so far away from me i gave up on it.

Thinking about giving it until Christmas here trying naturally. I'm 42.

congratulations on BFP flower!

Wonderful news flower, congratulations! Really willing this to be it for you! xxx

Thanks annie. Nice to see you back here. Hope you're doing ok. I'm completely convinced i wouldn't be here without coventry. Of course I'm sure anyone who happened to have success when taking a particular treatment would probably think that, but i truly believe it after the high uNK diagnosis. Completely understand that is a long way for you to go. I was lucky enough to be able to stay with my sister in Derbyshire before/after, but it was still a right old trek. However, for me it was worth every second/every penny.
Are you feeling ready to try again? Really wishing you luck for this next one xx

flower so happy to hear you've got a bfp! Brilliant news. Hope this is the one! Xx

Welcome to all the newbies. Sorry you have to be here but it's the best place under the circumstances!

Crap! Just posted on wrong thread....I'll copy and paste it....

Wow! This thread is a ghost town!

Just wanted to pop by and let you guys know, we had our first scan at 6 weeks, and we have a HEARTBEAT!!!

Never saw a hb with the my previous two pregnancies that mc'd, nervous but happy x

How is everyone? I hope I'm on the right thread?

Ok I don't think I will ever catch up properly, but from a quick look, great news flower, texta, and paws, everything massively crossed for you all.

Hello to all the new faces, sorry that you have found yourselves with the need to join this thread.

So I had my 20 wk scan last week and all was well - I was so scared the whole way through but the sonographer was lovely.. Still v anxious but trying hard not to be.