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Original poster

Recurrent Miscarriage Support thread 14 - tests, treatment, trying again

999 replies

Justonemoretime · 29/11/2014 17:38

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats :)

OP posts:
bakingtins · 18/12/2014 12:23

Wonderful news cat I'm so happy for you. Enjoy every minute!

girliesaints · 18/12/2014 13:01

Yipee Cat! Enjoy every moment x

Flen · 18/12/2014 13:19

Agh! An EPU full of babies! Agh!

bootles · 18/12/2014 13:26

Woo hoo cat !! Fantastic. Such a long wait for you, enjoy it all. X

girliesaints · 18/12/2014 13:28

And breath Flen, remember why you're there. Hope you're seen soon x

longestlurkerever · 18/12/2014 13:38

Cat - feel properly tearful for you. What a momentous occasion after 6 years! And to think how many times you've posted that you'd never get here... You and your story are inspirational.

Good luck to purple.

bakingtins · 18/12/2014 13:41

Ladies purple posted recently saying she doesn't have a scan until 8/1?? It's march that has a scan today as part of RMC investigations.

Catlover2014 · 18/12/2014 14:07

I hate that they design it this way Flen heartless really. Keep your head in a book and don't look up, that's my strategy!

Thanks ladies for being lovely!

XxX

bootles · 18/12/2014 14:22

Sorry flen cross posted. Why oh why can't they design these places better. Hope you get through the appointment quickly.

Marchgirl · 18/12/2014 14:34

Waves to everyone.
Yay cat! That's fab news. It'll be so nice for you to go into Christmas knowing all is going so well.

Sorry you have to sit in the waiting room with all the pregnant people flen. Sad. I wish they would all have a separate waiting room. On the plus side, you are there for a positive reason this time, and things will get better for you. Hope they don't bleed you dry.
Well my scan went fine. All totally normal (as expected). It was a bit weird having a scan with no baby to look at, but it was a different hospital and they were lovely so didn't bring back too many bad memories.

So glad I didn't miss my course for that, it's been really interesting and quite a nice easy run into the Christmas week.

Hope everyone's day is going ok

bythesea82 · 18/12/2014 14:50

cat really over the moon for you, congratulations.
march glad scan was ok and normal. Agree, very weird having scans when you know nothing there! I've had a few of them.
flen hope you have some blood left....

Flen · 18/12/2014 14:56

Hi all, right, I'm a bit of a mess post-bloods taking and would like some advice.

The whole process has been rather unclear with my EPU and RMC, and it's doing my head in. Today the EPU nurse, who is always the one there and the main point of contact, seemed to say that even if there are any issues that show up in the bloods, no treatment is begun until the pregnancy is established as viable. Now I am aware that consultants may say something different to her, but it scared the shit out of me! From what I have picked up via this thread, people are beginning treatments from as early as CD21. My miscarriages seem to happen between 6 and 7 weeks, so if I'm not starting treatment until 6 weeks (when they first scan), this seems MENTAL.

What I am wondering now is whether I wait until we see the consultant on 16th January and see what he says (the results of the bloods probably won't be back by then) or whether to look at private options because this is all doing my head in so much. I just want to sit down with someone and talk through how to proceed! I don't know whether to try again or wait til we see the consultant, or wait til the bloods come back and I am feeling very wobbly and tearful and confused.

I would really appreciate your thoughts.

Floweroct · 18/12/2014 16:26

Ah sorry flen, I'm afraid I don't know the answer but will be interested to hear what the others say. It really does feel like such a panic sometimes about the best thing to do doesn't it.

Glad to see there've been good scans recently, really makes me want to be going through it too, think we're just going to carry on ttc til I have my first appt - I can't be doing with waiting!! But know if I get bfp it'll be panic stations!!

Tanny sorry to hear your news.

1 day left and then 16 days off, really need this break!

cloudjumper · 18/12/2014 16:52

flen Sorry to hear that you are so upset - it never ends, does it?!
Do you think that you might be able to wait until your appointment with the consultant in January, to then really grill him/her about the treatment strategy that they would recommend? Even going in with a list of questions, if you have to?
As knowledgeable the nurses are, they are not the ones who make the treatment plans, and every case is different - so they might not do the heparin/progesterone before 6 weeks for one person, but it might be very different for another. Just ask on here, you will get so many different answers about when and how treatments during pregnancy were initiated.
If you don't feel that you can wait until January, is there a possibility to book a private appointment with the consultant you are meant to see? Some do that, it might be worth exploring.
Unfortunately, there is no golden rule about rmc treatments, it really depends on who is overseeing you.
Sorry if that is not very helpful!

Marchgirl · 18/12/2014 17:39

Oh flen. Sorry your appointment has been so upsetting Sad.
The heparin (if you need it) will be prescribed from the foetus being seen in utero. This is normally at 6 weeks I think but some have gone at 5 if I remember correctly.
Progesterone will be from bfp (Coventry protocol is from cd21/7dpo). I'm almost certain they wouldn't prescribe it only from 6 wks onwards, as it's purpose is to support the early pregnancy until the placenta is formed at around 8 to 10 wks. By 6 weeks the placenta would be almost ready, so it would be stupid to just do it from then. I would imagine they will almost certainly prescribe progesterone for you. It's seems to be standard procedure (damn this promise trial for not publishing yet!)
I'm not sure about aspirin, but I think that's after bfp too rather than before, so if you're seeing the consultant before then,it should be ok.
I know it's naughty to do it, but could you see your gp to ask for the progesterone early in case you get an early bfp?,Then you could take it from cd21 anyway

TinyTear · 18/12/2014 17:43

I can see if I have some progesterone left if you want
But you can try and see if your GP would give it from day 21...

bakingtins · 18/12/2014 18:17

flen I think the nurse is talking rubbish. The treatments need to be in there early as the critical things are happening in those very early weeks. Coventry recommend that heparin is not given until after a scan, but it's a v early scan (they recommend 5 weeks) just to confirm the sac is in the womb, not ectopic. That's a week before anyone would expect to be saying a pregnancy is viable.
Routine bloods should be back quickly, it's only things like genetic tests that take a long time. Given that you have a consultant appointment only a month away, I'd try to enjoy Christmas, not TTC, and write down what you want to find out from that appointment, assuming you'll have the majority of results back to discuss. If you possibly can, take DH or a friend along so you have someone else to take in the information, and/or record it ( can you do this on your phone?) Aim to come out of it with a clear plan for next time.
I can't see any advantage in going private when you are in the middle of the NHS investigations, a local consultant is not going to do anything different (it's usually the same people you are seeing anyway) Save your money to go to Coventry if you are not satisfied with the outcome in January.

Marchgirl · 18/12/2014 18:58

Well put baking.
I wonder if the nurse thought she was trying to put your mind at rest (though failing) by saying that you shouldn't worry about getting pg before next appointment as nothing would be done before then. She obv had the opposite effect.
I seem to remember you saying you would be testing at about the same time as the appointment. If that's the case then any meds can be prescribed at the appt and taken immediately if you get bfp.

Original poster
Justonemoretime · 18/12/2014 19:13

Flen, sorry you've found it so upsetting today. I agree with what others have said, and I felt exactly the same about the plan St Mary's offered me, which I thought would have been too little, too late. Progesterone needs to be (at least) from BFP, maybe before, as Coventry advise. Heparin from 'in uterine' scan. I had it from 5 something, Tanny had it from 4 and a half, I think! I'd save your money for Coventry if you don't get an answer that makes you feel like you're on the right plan for you. They were certainly the only clinic I went to where I felt like they could 'do something' about my RMC. It's a personal choice, but being happy with your care plan is a great way to at least feel like you're doing everything possible that you can to get a good outcome next time.

OP posts:
Flen · 18/12/2014 19:32

Thank you everyone, that is very helpful, both in terms of clarifying treatment plans and clarifying my thoughts about the whole thing.

We are going to call the consultant's secretary tomorrow and ask a couple of questions via her, specifically about whether and when to try again (the infuriating thing is that I am due to ovulate on the day of the consultant appointment!!!)

Assuming the bloods are back by that date, we can do what you suggest March, and ask for prescription in case we do get BFP at the end of Jan, as well as talk to my GP about progesterone (thank you tiny, for the offer). baking I am very glad you said she was talking rubbish! I thought she was, but got all confused...

It was a really pants appointment. Babies in the waiting room, 1.5 hour wait and then the EPU nurse was literally walking in and out of her room while we were trying to talk to her. Am now drinking medicinal hot chocolate.

Flen · 18/12/2014 19:34

Cross-posting just! But yes, exactly as you say. I want to feel happy with what is being offered, and am having that weird feeling you described so well in one of your pieces about having researched stuff and having knowledge!

TinyTear · 18/12/2014 20:23

Flen, flen that is a good sign, with my dd I was due to ovulate on the day I saw Mr Rai at St Mary's... He told us all bloods were normal, we went home, had a quickie at lunch time as I had to go to work and now have a snotty nealy 3yo on me...

Catlover2014 · 18/12/2014 20:50

Sounds like a hard day flen hugs to you. I would echo what the others have said. I guess it depends what (if any) issues they find. I have had mini aspirin from BFP and cyclogest progesterone from day 21 and it seems to have done the trick. I am weaning off my progesterone now so may have some spare if you want it, PM me if so.

XxX

longestlurkerever · 18/12/2014 21:16

Sorry it was rubbish flen. Glad everyone has good advice for you. Good luck! tiny's story made me smile!

Glad you had your scan March and all was normal. I thought purple had some sort of appointment coming up though could be wrong.

Dh just got his appointment for his colonoscopy through. It's on Saturday! Bit short notice - he was allegedly meant to start the preparation diet this morning. Luckily he has been avoiding most of the things on the banned list anyway. Sat disrupts our plans a bit but less than Mon-wed would have done so think he is going to keep the appointment if they say it's ok that he has 90% followed the diet. Wish us luck for a scan of a different kind. Am feeling anxious again. Xx

Original poster
Justonemoretime · 18/12/2014 22:01

Longest, I had a colonoscopy years ago and its not your best day out, but its ok. The meds to clear him out will work alarmingly and suddenly etc so stay within dashing distance of the loo. Jelly and soup made with an oxo cube should help take the edge off the hunger. The procedure itself doesn't hurt. Good luck to him for it.

OP posts: