RESPONSE Trial for Recurrent Miscarriage - Thread 4

[Vicki272]

Thread for all ladies on the RESPONSE trial - all stages welcome, for a bit of well needed silliness and good old fashioned all round advice and support!

Sorry choccy I understand what you're saying but I think we're going to have to agree to disagree on this one. If taking aspirin was going to have an impact on my bloods, and therefore impact on the trial, then my trial doctor would not be telling me to take it & it would be a banned drug in the trial. The only banned drug of this type is injectable blood thinners and it says this in the trial paperwork which I re-read today.

I'm sure everything is fine Vicki because it's brown. The clot could just be the last of the 'collection' of blood and this could be the end of the bleed. But give your doctor a call if your concerned about it.

I hope so! Going to give L a call in the morning.

Got a funny little twinge quite deep in my groin too. It's not like any of the othe mcs I've had so hopefully that's a good sign. X

Thanks ladies. it really is bloody sore! ha ha!

We had a nightmare this year with our tax return Choccy (we rent out DHs old house). Filled it all in and paid the full amount. Only to get fined £100 for missing a minute box that said 'I declare that everything is correct'. We were fuming! I meam - why take the mobey without a reminder to tick it! Won our appeal though.

I really feel for you vicki, so stressful and all this brown draw is the
Sat thing you need. It was fine for me though and fingers crossed for you too!

Nasty bruise kazz... Looks like a good night!!

I'm confused as well little... I know Prof Q is dead against aspirin due to recent research but as you say different docs different opinions so fair enough BUT assuming your pregnancy goes well they won't know whether it was thanks to the aspirin or the trial drug so what use is that to the trial?

So fed up of predictive text, meant to say brown gunk is last thing you need vicki x

Hey everyone I've been lurking but not really wanting to say anything been abit down just wish I felt more ppregnant which is crazy as I had a good scan last Thursday but still the good feeling was gone a few hours after, I want to be happy and excited and I feel utter rubbish and didn't want to write a big woe is me post (even though I clearly just have sorry)

Anyway baby aspirin.....I was put onto for the pregnancies which resulted in miscarriage and I asked trial nurse about it this time (heartlands) and was told definitely NO as it was shown to cause more harm than good if there wasn't a certain something you where taking it for that I can't remember (my bmi is also over 30 don't know if that's why my gp put me on it the first few times) Anyway I'm sure if the dr has put you on it there is a reason and it must be ok for while on trial? It seems everyone has different opinions on these things including the Dr's/ nurses hard to keep up!
I may go back into hiding for another week or so definately a bury my head in the sand kind of person at the minute.

Good luck to everyone at your different stages x

Good to hear from you Gen and if head in the sand works stick with it.xxxx

Aaaargh, I'm having a right anxious morning.
I've got my furst antenatal class at 10pm. A milestone I never thought I'd reach but also one I'm dreading AS I'll have to face a room full of smug pregnant ladies and feel like an imposter. That's one thing that's really stuck with me this time is that I feel like I'm gate crashing a party that I've been kicked out if 3 times already.
I really don't want to be compared to and just know I'm going to feel queried about bump size and get a bit teary with all the factual stuff happening.
It's been weeks and weeks since my last midwife appointment (I think it was at 22 weeks) so ages ago and it seems such a contrast to the intensive care plan in the early weeks of the trial.
I do see my midwife tomorrow but o think I'm going to need more regular appointments and hopefully a scan it two more in the coming weeks.
I wish I could just go to sleep and wake up in November holding my baby.

Big hugs size. I think how you're feeling is something we can all relate to and totally normal for us if that's any consolation. Definitely speak to your midwife and see what extra support she can provide.

Enjoy your antenatal class. You are not an imposter!

Ah size, it's a great thing to go to antenatal classes. What a milestone.

Why do,you think their will be smug pregnant ladies, and why will you feel,like an imposter?
Your certainly not an imposter, and their may be many other women that have been through what you, and we have.
No one has to know the ins and outs of your history!

I know mine was a long time ago, but I don't think they did the whole 'my name is ....., and this is my 1st-5th child/pregnancy.
I just sat there and listened to a slightly eccentric women waffle on!

Please try not to fear it, it's just another part that you will get through and conker, onwards and upwards.
Christ, if your wishing it's November already, I'll be screwed we are due Dec, and no where near ready, hehehe xx

Ah bless you size! I don't think the pregnant women will all be smug, like indie said, why would they? They probably worry that everyone else will be know it all's or already have kids. Chin up, you will fit in, the same as the rest of the ladies there :)
November will soon be here, it's only like 6 weeks till October! I have that same feeling though, wake me up in january! Day by day we're all getting there, you aren't alone! X

MAS that's what I was trying to say but failed lol. It will seriously impact the trial results taking the baby aspirin. I think your trial Dr has been misinformed personally little.

Kazz that's ludicrous with that fine!! I do mine online and you can't submit it without ticking it. What wankers! Glad you sorted it though. How's your bruise?

Vicki did you call? So sorry about all the worry.

Size I'm so sorry you're still feeling like this. You ARE pregnant and you will hold that baby in your arms in a couple of months. Totally understand your fear, sending hugs xx

Gen sorry you're feeling a bit down too. Enjoy not feeling pregnant, you might be one of the lucky ones!!

choccy still trying to get hold of L... she's in scans i think.

Today has not been a good day...

More spotting then a large amount of brown cm this morning after a small clot last night.

I can't help but think the worst and i am really stressing myself out about it. Made myself sick with panic this morning (don't think it is morning sickness yet).

I don't feel pregnant either... just constantly stressed and panicked.

I have never had this before in any of the others. I just don't know what it could be, it has been going on since Friday now. Do you think it could be from the drugs?

I burst into tears at work this morning, one of my friends asked me if i was alright and i just unraveled - i text the boss this morning and said i wasn't coming in then changed my mind as thought that sitting alone and dwelling on it might be worse.

I nearly didn't make it through the morning, big teary mess!!!

Sorry for droning on and on about it ladies... i am in such a state! i never thought that it would be this hard this time around, seems so much worse than any of the others.

xx

Vicki did you ask for hcg boooo day to be done yesterday with trial bloods. At this stage it's the only thing they can do to give you peace of mind so I think it's something you should push for. Unfortunately it means 2 tests 2 days apart so if you had the test yesterday you'll get some reassurance tomorrow.

I really hope all will be fine. I really do know how you feel and I'm really hoping that you get sobe reassurance soon. The stress isn't going home to help anything xxx

Thanks for your lovely messages.
I went and I survived.
There was an awful but when we had to introduce ourselves and say our due date and if it's first baby etc. And I was last and I tried to speak and introduced myself all high pitchy as fighting back tears and says first baby but fourth pregnancy, and I burst into tears.
But a couple of the girls car up to me at the end of the class and were lovely. So hopefully I'll be able to make a few friends.
I've been really unlucky with current friends and their pregnancies and that's where my smug fixation comes from. Very few have been at all understanding about the shot shower I've been through and have been massively clumsy many times with clangers. For example I one friebd say to me at the weekend 'I wasn't sure if you'd still be pregnant'. Yeh thanks, I know I'm Mrs Miscarriage but trying my best you know. And another with CONSTANT bump photos on Facebook whining that they had to cancel a trip to Vietnam due to this wholly unplanned pregnancy (Erm, they've been married 2 years and I'm oretty sure they know how to use contraception, we are not teenagers). Anyway, I've been avoiding pregnant women for so long as as soon as I thought id for in, I'd then lose the baby, so it's a big shift for me to manage.
I don't k ow why I feel like an imposter. I suppose it's because of the many false starts at pregnancy that I fjbt think I'm very good at it. So feel awkward with women that seem to breeze through it so easily.
But as I saud, I survuved today and seeing midwife tomorrow to be much more honest about how I'm feeling.
Jeez, enough about me. What a pity party I threw for myself!
Vicki so sorry you must be shit scared. I hope you get reassurance soon. I definitely temever cramping a lot especially after the injections in the early weeks.
Also I am massively confused about the baby aspirin recommendation as my understanding is that zero other medication is allowed on the trial as it will skew results. I'd have thought I'd disqualify you to be honest as it's introducing another factor. As now there's 4 possibilities: 1. The drug. 2. The placebo. 3. The drug & baby aspirin. 4. The placebo & baby aspirin.
And actually it's alarmed me a lot as it invalidates the data being collected from the trial participants that are following the strict rules.
It's not a case of agree to disagree, it's a fundamental rule of a medical trial.
I'll flag it with my team as I think it's
definitely not right.
Not a personal attack there, it's your trial team that I'm having a pop at!

Yay Size, you made it out in one piece. Everything you said about smugness and imposter makes complete sense now! I hope you don't think I was questioning or belittling it, I just wanted to understand what you meant. And I do know . Xx
I think we are all so different and that's where we all think differently. My attitude to others is, yep you may have had it easy, I haven't, hay ho, I can only do what I can, let's keep going. But I'm a stubborn old boot, and sod what anyone else thinks!!!!
I thinks it's great we can all share our thoughts here.

That would be great if you could get chatting to others in the group.

I'm not a first timer, so I will say if your health visitor team etc send you an invite for a baby group after baby arrives, GO ALONG.
Ours lasted five weeks, an information type session, where you learn more about feeding, poo, sick and all the other bits!!! Plus giggle when someone bumped baby in the car seat, we all looked like such amateurs!!!

Our group swapped phone numbers, and I still have a couple friends SEVEN years down the line, and our kids are great friends, camping, days out, and the most important Mummy pub night every Tuesday!

Vicki, have they given you a next step?? Bloods or something. This can't be good to prolong the stressing.
Thinking of you, and keeping everything crossed. Xx

Hate to say it, but I agree with Size and choccy regarding the aspirin, as it's quite a game changer in that it can help pregnancies etc.

I had to tell them I took a natural nose spray for hayfever, and they noted it down, how long, how many times etc. All though this wouldn't impact the trial in anyway. Also the few paracetamols I had when really poorly.

Fabulous you made it through size, and don't ever feel embarrassed about string upset about everything. If people aren't sympathetic fuck em!
But those that are, keep hold of them. It's not a pity party, we're here to 'hold hands' and get each other through!
And that comment from your 'friend' has totally shocked right tbh!! What a nasty and evil thing to say!!

I'm glad it's not just me saying about the aspirin. Fwiw, my iron was low when on the trial drug and I wasn't allowed to even take iron supplements!! Just told to eat more iron rich food. When it was still low after I'd come off the jabs, I was STILL told not to use supplements. It's gone back to more normal now but it just goes to show the seriousness of not jeopardising the trial results with anything.

Hope your mw appt goes ok tomorrow size, forgot to say.
I've got mine Thursday, then whooping cough jab Friday (lucky me! ) then growth scan and consultant appt Monday, so a busy week here!

Thanks indie, that's great to hear a positive story about meeting good bunch of friends from these classes.
Hopefully I'll relax in a bit and begin to enjy them.
As I said I've had a rough ride with my own friends, so very weary of making new ones. But it's a new stage of life now and I need to keep looking forward.
little I hope I've not come across as rude and ranty, it's not directed at you, but purely from a scientific standpoint it's ringing strong alarm bells as its really endangers the integrity if all the data they are collecting from all the women participating. It's a pretty serious issue.

I've emailed RESPONSE size, just waiting to hear back x

Be interesting what they say choccy. It's a pretty pointless trial if it is allowed, we may as well all be doing progesterone too... just in case.

Glad you enjoyed your class size. I really enjoyed them with ds but that was a long time ago, made some great friends but we've moved away since. It's nice as you're all on maternity together struggling with the same things. I understand why you were so nervous, hope your midwife is understanding tomorrow.

Will those who have already got kids do the antenatal classes this time round? I'm undecided.

Louise wasn't your scan yesterday? Hope all went well and you are feeling a bit better.

hi everyone...i just want to say bye and thank you for all the support over the very short period i've been on here, and i know you've all mentioned that it's not a personal attack and you're just thinking of the trial, but its really upset me.

When i first put on that I was told to take aspirin I did not expect such a scary response. It scared the shit out of me that that I was doing wrong for my pregnancy and that you were so wholly against it and although you may not have meant it like that, I felt like I was been shouted at. Last night I sat and cried about it and again in my appointment because i feel you are saying I am ruining the trial. I personally trust my doctor implicitly and while I don't know or understand the science behind all of this I trust him that they would not tell me to take something that would impact, or skew, the results. I do know that as part of us been accepted into this trial we had to have tests to show we did not suffer from 'sticky blood' and thus this was not causing our miscarriages. Maybe because we are not suffering from this then it can have no impact on the trial results and maybe I have been told to take it not to reduce the risks of miscarriage but to instead help development of a healthy baby. Iron supplements are also a requirement for our bodies to help and encourage healthy development and I can't see how they would affect the results of the trial.

I just don't want to get into these discussions about what is right and wrong when we don't know the science or medical reasoning behind it, and I definitely don't want it making me stressed and anxious. Just logging back on here today made me feel crap.

Congratulations to all that are pregnant and progressing positively, i'm so happy for you all. vicki I hope everything is fine and it all works out for you. kazz i wish you the world of good luck with your next pregnancy, enjoy your holiday!

x

Sorry to hear that little. I don't know much about aspirin medically so therefore never had an opinion. I don't think people meant to to upset you though, more so that they were concerned for you.
Like you said, your trial team have put you on aspirin and that's what you have to go with. X

little I'm so sorry that you've interpreted the comments that way. I tried to make it as clear as possible that none were directed at you. Obviously we all want to do what is best for your babies, and you're right to be following the advice you were given. I know you're not doing anything to jeopardise the trial!
What a few of us have latched onto is that it seems that you've been given conflicting advice from some of us. Which is why we have got our knickers in a twist.
It's not in any way at all intended to single you out or put any kind of blame your way. You've done nothing wrong, you've followed medical advice. As I said, the concern is that we should all be getting the same information as we are all on the same trial and to get accurate results there shouldn't be different rules for different hospitals running it.
We are all in this together and I hate the thought of you feeling unwelcome. Honestly that is really not the case at all.
Please do stick around and I'm sure we'll get a definitive answer to this baby aspirin conundrum soon. Choccy is on the case.
Honestly, I can't hammer home enough just how much this discussion isn't about you it's about the information you've been given.