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)

Yes, Coventry prescribe heparin and advise against aspirin. They use it for its cytoprotective effect on the placenta, protecting the placental cells and helping the implantation process. Not absolutely everyone gets it. It seems that if all the losses have been v early (before the placenta starts to form) or later (after the placenta was fully formed, has taken over and was working ok), then they don't always prescribe the heparin, as it's not necessarily indicated. When they do prescribe it, it is from location scan (around 5-6 weeks), as they prefer to check the pg is in the right place first (ectopics and blood thinners are not a good combo).

I can't say whether it's just the pred, or the combo of pred and heparin that's been the winning thing for me (so far), but there are a number of peeps on the board/fb page who tested normal for uNK, so they are just on heparin and prog (no steroids), and have also been successful. With my high uNK I don't think heparin alone would have done enough, but equally don't know if the steroids on their own would have worked. I know others (including mr shehata) do steroids in combo with other things, but not heparin, and that clearly works for a lot of people too.
Of course now I'm through that bit, I'm not really bothered which it was for me. If I get through this successfully this time I won't be doing it again! But some research on both steroids and heparin independently would help future unlucky people who are going through this.

Gm March yes absolutely, we desperately need some good robust trials. Like u said, Mr Shehata advised me steroids (and Intralipids which I am not keen for..) and aspirin but refused heparin even though i'm MTHFR A1298C homozygous mutation. I also have autoimmune conditions and i have heard the same thing abt heparin cytoprotective antiinflammatory effect etc but he doesnt want me to be on it..it's a big worry for me..as almost everyone else in the world, my locals and GP are advising to go for it, atleast 20 mg dose, after heart beat is established..ah for now one day at a time..waiting for the scan next week but will defo have a panic whether to start heparin or not...x

Really pleased for ur progress so far and yes once u reach there who cares what worked for u..esp when u know u r not going to do the same again! xx

I feel like I have deserted the thread again..just can't keep up. So sorry to see more new faces - have said hello to some of you today on the fb group.

Waving to all x

Hi all I haven't been on for a while. I have just tested positive today I was a week late I'm so scared this is my 4th time. I went to rmc they said everything is ok. I'm good to try when ever I'm ready and I have fallen pregnant 1st cycle. When should I go back to them to tell them I'm pregnant?

I'm sorry to jump into this thread and I don't want to interrupt on-going chats... but I just want to share my story. I'm 31, DH is 33. We have been TTC for nearly 2 years. In that time we have had 2 empty sacs, and most recently (last week) we lost a third pregnancy, although this time we had seen a heartbeat at 6 weeks along, which filled us with hope. Turns out, it didn't develop past that point.

I haven't felt very good the last day or two, having had a 'strong spell' straight after my surgery. We have booked to go for private testing, because we just want to know what is going wrong. I have so many questions in my head which I want to throw out there - not for answers, but just because I wonder if I'm going mad.

1.) What if this means I will never maintain a pregnancy?
2.) How many times can I go through this before I give up?
3.) If a problem is found, how will I cope if it's not treatable?
4.) If a problem is found, which I need to take medication for, how will I cope with the medication?
5.) If a problem is found that I need regular treatment for, how will I cope fitting this into my already mad working life?
6.) I believe I'm a 'nice person', always helping others, never killed anyone etc...! so why is this happening to me?
7.) Am I a 'crap wife' because my body keeps letting me down, does my husband secretly resent me?
8.) Why does everyone around me seem to fall pregnant like falling off a log and sail through the whole thing?
9.) Will I ever have a positive pregnancy experience? Or, if I'm successful one day, will I basically just live in the bathroom with my heart pounding and my head spinning waiting for it all to come to a horrible terrifying end?

I guess, I just want to know if these questions occurred to you too. I'm so sorry for what everyone is going through/has gone through. x

Congratulations bubbly are you on any kind of treatment plan after the all clear from rmc unit? Did they say to contact them? Really hope this is it for you xx

waiting welcome. I think I can honestly say all of us have had all those questions in our heads at some point in amongst all the heartbreak we've been through. You are not alone in how you're feeling. And you're not going mad as such, but experiencing the shittyness that is rmc. Do you have a date for the private testing?

Hi again.

Thanks for that, it's good to know others have wondered the same thing. Testing is in early January. I was hoping to use the time to heal and regain my mental strength as I can't face another pregnancy right now. But at the same time, the tests terrify me. I have somehow become irrationally convinced that I will never get there. I'm not sure where my brain even gets so much negativity. Xx

Thanks mrsdiddlydoo.The rmc put me on 5mg folic acid. I been taking zinc. I contacted the rmc today so I'm waiting for them to get back to me. I'm sooo scared.

Waiting all those questions are normal. The only thing i can say is remain positive. I had 3MC still ttc#1. It's hard you will have up days and will have down days. More often they never find anything wrong, but remember that's a good things

Thanks all. Bubbly congrats - I know that nervous feeling so well. Fingers crossed for you. Can I ask if they recommended you do anything differently this time - such as taking aspirin? Xx

Congrats Bubbles fingers crossed for you :)

Welcome Waiting. I only joined last week after a third miscarriage so I'm a newby too. Sorry for your losses, really glad you are going for private testing. You will get lots of support and advice on here so keep in touch :)

waiting just try to take one day at a time and maybe plan a few nice things to do with your dp over the coming weeks. Your latest loss was only last week. It must be still so raw my lovely especially after seeing a heartbeat. If a day is too long, half a day, an hour... Have you much RL support? I recommend lots of chocolate and cake and anything that makes you feel better. Box sets. TV.

This thread is a bit quieter than it once was because we have a busy fb group. You'd be more than welcome to join. Let me know if you do and I'll try to figure out how you add someone. Xx

Being nervous is natural bubbles but the odds are in your favour!

Hi Lou. Thanks for the msg. I'm so sorry you recently had your third loss. Are you going to have tests too? All my losses have been 'similar' in terms of when my symptoms began, always around 10 weeks, (regardless of what's happened with the pregnancy) always starting with a horrible migraine then the next day the headache is gone and I begin spotting old blood. I just have this feeling when I start to spot like my body is trying to fight something foreign - like my body just realises it's been poisoned or something! With my third, I felt terrible at 6 weeks and had a horrible headache and spotting, but the scan showed a heartbeat. But it looks like even then my body was trying to get rid of it. I just hope I can get some treatment to help me maintain it next time. It would be good to hear your stories. I feel quite alone with nobody close to me who has been through the same thing. I feel like an alien to be avoided! X

Oh thank you Mrs D, you must have been writing that while I was writing my last post. I would be OK to join a FB group but it would need to be hidden/private etc. Maybe you can msg me on here, not sure how it works yet!

Sorry to jump in and post. Had an early scan today after spotting. Empty sac with what looked like the start of a viable pregnancy.

It's all over again. 4 years of ttc. Shit loads of drugs. Loads of money. 3 mc's. What the fuck have I or any of us done to deserve this shit?

I'm so so sorry. There are no words. Please don't lose hope. Xx

Waiting- mine were all different- first one happened naturally at 9 weeks, it was very difficult physically but happened fast. The next one was discovered at 10 weeks after mild cramp in my back and a tiny amount of spotting, it had stopped at 7 weeks. The most recent one was discovered at 7 weeks (back cramp no bleeding) and had stopped at 5 weeks. I pushed for NHS blood tests after my second one in May and they all came back clear. They told me just bad luck etc etc. I saw a private consultant for the most recent one and he advised kyrotyping to check to see if myself or partner have chromosome issue which would affect a baby. It's unlikely (2%) but I think we will check. He suggested progesterone and Aspirin for next time too. I may take his advice or might do what lots of the girls on here have done and make an appointment for the hospital in Coventry for tests to see if I have high killer cells. I thinking basically means that the immune system is working too well and sees the baby as a bad thing. Lots of the girls on here have had this diagnosed and have been prescribed steroids for it from early in pregnancy.
I'm probably one of the least clued up on here but feel free to ask me anything. I felt very alone before joining this because I didn't have any friends who had gone through it, same as you said. You will probably feel more positive in time reading about some of the success stories here too.

Ps the fb is private so nobody else can see that you are on it so you should def join.

How do you join the Facebook page. What do I search for

Hello all. Not been on in a few days.
bubbly congratulations. Delighted to hear your news and wishing you all the best for this one.

waiting, those are all questions that we've all felt after rmc. You're right in the thick of it at the moment, so it's really hard to see the future and have and hope, but as you get your testing, you will find hope returns, slowly sneaking in again.

For anyone that wants to join the fb group, if you pm me your fb name and a description of your pic then I'll add you as a friend then when you accept I can add you to the group (you can unfriend afterwards if you want). It's a secret group so nobody can see that you've joined our what you post (just make sure you're posting to the group when you compose something new)

Ps, you can't just search for the group because of it being secret rather than private, so it's invite only.

Thank you march you're awesome. I'm crap at technology.

Ladies the fb group is completely secret. Noone can see anything. Totally recommend you pm march and come find us. Xx

barking I've just seen your update. I might have read it wrong but are you saying the scan looked good but you're spotting? Spotting doesn't always mean it's over, although for most of us it is terrifying.

snoopy the scan showed nothing good. An empty sac with possibly the beginnings of a pregnancy. I should have been 6+3. Heavier bleeding and cramps kept me awake most of the night, red and clotted. No hope here.
I've stopped the progesterone as I don't want anything slowing this down, both previous mc's took 7 weeks of bleeding before my hcg went down to nothing. They told me to carry on until the hcg results today but I really don't see the point. Two heavy bleeds this morning.

Oh barking I'm so sorry, I really believed this would be your one. I hope you're getting lots of support in real life and I'll be thinking of you x

barkingtreefrog I'm sorry to hear. you haven't done anything to deserve this. its just bad luck for all of us