Recurrent Miscarriage Support Thread 21 - tests, treatment, trying again.

[Justonemoretime]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

Welcome to the newbies & sorry for your losses. Hope you get the support you're looking for from here.

Glad to hear Coventry was productive March & Cheesy. Also glad to hear that the response trial was looked on favourably March.

Sasha I'm so sorry it looks like it is happening again. The wait between scans must be horrific.

Becca and Strubi Sorry for your losses.

I hope all of you will find plenty of help and support on here.

So, an update on my Coventry experience, here goes...

Arrived 45 mins early (but barriers on car park weren't working so got it free, woo hoo!) but still had to wait nearly another hour because i think a nurse cocked up booking us in so they saw someone who they thought had been waiting longer but actually arrived after us...grrrr
Apart from that though, it was great!
Met prof brosens (who I agree brummie is also ace), we went through my history. He said most people want to find an 'answer' for their miscarriages so it can be solved but that there would never be a definitive reason and solution for miscarriages, at the end of the day, if the embryo is dodgy and the lining isn't working properly, a miscarriage is likely to happen.
He went on to describe the hyper fertility theory and that the coventry protocol should hopefully normalise the lining so it doesn't accept faulty embryos, which he thinks could be the case for my 2nd mc where the sac never got beyond 4.5wks.
I laid down for the scan and my knees were shaking The scan showed i ovulated from my right side and my lining was about 7.6mm. He said it wasn't optimum but still considered normal.
He asked how I'd heard of the clinic so I bigged up you lot on this thread. He laughed and I think he secretly loves being a bit of a celeb on here, ha ha! He was also saying how he thinks its a disgrace the uk only test after 3 mcs.
Then the 'procedure'...Speculum in but he said my cervix was a bit 'floppy' so I needed to have this clamp thing put in! If I had been watching from afar I would have been pissing myself at having a 'floppy' cervix, ha ha, but think I was a bit and wasted from the gas and air . I know the gas doesn't work for everyone but what worked for me was taking a few very long deep breaths of it, then a couple of clear ones (then it hits, woo hoo) then more deep gas and air ones. Anyway, the clamp thing didn't really hurt, just uncomfortable.
Then it was a bit uncomfortable as the straw thing went in (which extracts the lining) but once it was in I couldn't feel it. And I only realised they were extracting because they started counting down from 10, I couldn't feel the cramping which they said would happen (I felt very wasted though, it was great) I also had 400mg ibuprofen an hour before and when this wore off on the way home I felt light cramps so had another which sorted it, so I think this also helped with the pain during the procedure. Then as soon as it was done they had everything 'out' in a split second and prof Brosens even said 'well done, you were amazing', ha ha! I'm sure it was just his dry sense of humour though. The nurse who provided gas and air was the loveliest. Also got to see my sample which was a bit odd.
I received a prescription for 400mg cyclogest, twice daily, which I got from the pharmacy. He said I'd receive an email with results in about 5 weeks and then a telephone app to discuss. The email is what I'll need to show my gp. I mentioned I would be on holiday at the same time as potential BFP (if it were to work first time ) and he said it would be fine to start the heparin a week later than what they recommend.

Sorry for the mammoth post! I hope its helpful to anyone thinking of going. Cloud that means you!

We're having some bubbles tonight to 'celebrate' our trip to Coventry and hopefully what will follow... xxx

Thanks for the update march l love hearing all the ideas/explanations - it feels so positive.

Glad you enjoyed it too cheesy

Hope your sickness is improving brummie

Oops x-posted with your big post cheesy. That's fab. Sounds so useful- especially the ibuprofen tip. Enjoy the champagne!

Welcome to the newbies, and sorry you find yourselves here.

Glad Coventry went well Cheesy and March. Cheesy, I also had to have the clamp - glad I'm not the only one with a floppy cervix!

Also thought Prof B was very funny. He said last time he'd seen Mumsnet someone had commented that he wasn't very enthusiastic so now he always says a very cheerful "HELLO!!!" Although surprised anyone would say that, he's VERY enthusiastic about the tissue samples according to the lovely nurse!

Oh but well annoyed that I missed the chance for gas and air... Prof B said "Well you've had two boys and fast births... so I'm hopeful that this will be easy!" And it was fine but I would definitely have been up for gas and air!!

Glad Coventry went well today March and Cheesy. Lining thickness was the same as mine Cheesy 7.6mm, but I was prescribed 200mg of progesterone to take twice a day. I wonder why the difference. It's interesting how everyone's experience of the scratch varies. Yours sounds painless Cheesy!!

Welcome to those new here, so sorry you find yourself here though. I hope you find it as helpful as I have.

Sebs have you done another test today?

jady I mentioned I'd been having spotting before periods since mc1 so maybe he took this as a sign of progesterone deficiency. I think he also said my lining was thinner at the sides (he took measurement from the top). Coincidentally, over the past couple of weeks I have been coming to the conclusion that mc1 has fucked up my hormones (well progesterone) and I think it may have caused mc2. I'm hoping the pessaries sort this out now. X

I got prescribed 200mg twice a day as well. Wonder why some are 200 and 400?

Hmmm. I got no chat about lining thickness or meds (although he knew i was already on progesterone from cd21 but didn't ask what dose). He wasn't there for the scan/biopsy (maybe because they were 45 mins behind), so maybe that's why i didn't get the extra info about my thickness. I expected to go back to him after the biopsy to talk about the treatment plan so hasn't even discussed that with him. If I'd known, i would have asked more at the consult but presumed he would have covered everything if I want seeing him again. Feel like I've missed out on some info but hopefully he'll talk about that at the phone consult

Thanks for the Coventry updates. I'm excited to go there myself which is a bit weird lol.

No testing here. I'm sure AF will appear tomorrow or Wednesday.

So sorry for those who have joined us on the thread. This is indeed the group no one wants to be part of

March Prof B wasn't there for my biopsy either. A lovely doc called Lauren did mine.

I only went back in to see him due to discussion about how thin my lining was at 6mm and for him to advise to that I could benefit from another but my hystereoscopy round irritate the lining so I should be ok

March I wasn't told about lining initially, I just happened to ask the nurse/doctor (possibly Lauren) that did the scan when she mentioned something about it looking ok. I'm sure they prescribe the differing amounts for a reason, I'm just curious more than anything else.

March* and Cheesy* i am completely glued to the spot reading your posts. Reading about the lining that isn't selective really rings bells with me - i've got pregnant pretty much first try every time (doesn't make any difference ladies). I really would rather it was just good embryos that were selected and save me the pain of mc. Which part of the coventry protocal is supposed to combat this issue ladies?

Pleased the visits to Coventry went well. I'm on the lower dose of progesterone. And didn't get offered gas and air!! Got my phone consultation tomorrow night. I'm not very good at remembering what to ask so if anyone has any words of wisdom to offer they'd be gratefully received. As my biopsy results are ok I'm guessing it will mainly be about a treatment plan. Was told I should take heparin. No idea how I'm going to get that (or a scan) via my gp who's on holiday until next week. Trying not to worry about it but imagine I'll be dreaming test results and injections tonight.

cheesy did they say what the latest is you should start heparin? Love prof b loving his celeb status on Mn!

seb hope things are resolved for you one way or another this week. You seem pretty calm about things. That's a compliment btw!

Rubbish seeing so many new faces today, but this is a good place to be.

Hope everyone else is doing ok.

Thank you for all being so welcoming. It's such early days for us right now I can't help but wonder why it's happened again and.dream.of what could've been. Coventry isn't overly far from me So would be worth seeing what they say. I am overweight so when I'm psychically and mentally in a better place I need to shed 2 stone! Anything to maximise our chances I'm glad your visit went ok. X

Oh Becca I'm so sorry

I've just started weight watchers and am really impressed so far. First weigh in on Saturday and I can't wait lol

So the Team PA announced via Facebook that she was pregnant with a super cute video. She's not even 12 weeks and or had a scan yet! I love her "naive" pregnancy thinking, compare to me who keeps thinking it will end in doom! Darn you MC for making me bitter.

Freckle, they think it's the progesterone that helps prepare the lining but it has to be taken early. Lots of rmc consultants say from bfp but Coventry is from 7dpo. If the lining is not properly prepared it leads to implantation of unsuitable eggs leading to mc but also implantation/placenta development issues with good eggs, leading to mc. And it's not just about the amount of progesterone but also about the body's response to it. I'm not sure exactly how the steroids fit into the picture as they are immune suppressants but he says it's not as simple as just suppressing the immune system for everyone otherwise they'd already have solved it!
His view was very much that the fate of almost all foetuses is decided before bfp. That made me feel a bit better as however much you tell yourself you did everything right, you can't help but wonder if you did something to cause it. He says not.

So AF didn't arrive overnight so I'm going to test again later when I can get to the shops. I am not expecting any line change from the last tests but I need to know one way or the other as I have my RMC appnt on Thursday.

March that's very interesting re. the fate of the pregnancy being known before BFP. I always thought my sons implantation was successful as I had an implantation bleed and yet didn't in my subsequent three failed pregnancies. Not sure if there is anything in that but there was a marked difference and it was the pre AF very dark spotting that made me test. Thank god I was allowed one innocent successful pregnancy before the gates of hell descended.

Welcome newbies, so sorry that you find yourselves here. Hopefully you'll find some comfort and info to help you make a plan to move forward.

So pleased to read of the positive experiences from Coventry. I'm looking forward to the day I get to send prof B a lovely photo of miniJust (30 weeks tomorrow - yikes!). Fwiw, I think the progesterone balance can be a fine one; I was originally prescribed the 200 twice a day from 7dpo, but they changes it to 200 from bfp after 3 months of not falling pg because they felt i was not very hyper fertile and they'd made me slightly too selective. Then I was moved up to the 400 after getting some spotting between 6-7 weeks with this pg. I think I just needed a bit of fine tuning!

Me too, I love reading about everyone's Coventry experience! I remember one sensation was that of relief that Prof B could see a pattern to my MCs that I knew was there but felt like was being denied by my local hospital.

Sorry to see newbies here, and Sasha really sorry you're back with us.

Lol, I love the thought of a floppy cervix - it makes me think a little bit of a sun hat with a big brim! I feel left out that I haven't met Prof B - Manchester follow his protocol anyway and I got my BfP just before I was due to see him. Maybe I could stand outside and ask for an autograph, the guys a genius. Fingers crossed Seb!

Sebsmummy1 good look for your weight in I've been looking briefly into weight watchers ot slimming world. It's interesting about the spotting and progesterone thing. I never spotted at all between periods untill miscarrige 1 then it seemed every cycle was dodgy spottinf including the ones conceived mc2 and then 3 I never made any association before but my progesterone has never been checked That I'm aware of the spotting stopped when I feIl pregnant with my second beautiful son... I haven't had spotting with this miscarrige and had a implantation bleed like I did with my oldest son mc2 and mc4. Maybe there is a reason after all. My hcg readings are still really High for saying the miscarrige started almost a week ago now. (5,500 area) so I think i had a really good implanter this time I don't think.some.of my other losses were as my hcg was low from the off. Interesting what you was told re it's decided before implantation what will lolly make it and what won't. Good luck with re test x

Thought I'd also add this which I only remembered this morning, which might be helpful...(sorry for another mammoth post)
Prof B said that out of lots of studies carried out on rmc couples, of the half that were given placebo (so actually did nothing), about 65% had a baby on attempt no 4, then of those which didn't, about 55% had a baby on attempt no5, and so on, so the vast majority of these couples had a baby without any treatment whatsoever, they just had to persevere as the lining and embryo are unique each time (which has already been relayed by someone on here). He also said I would have a baby if we kept trying. So it was great to hear and had to hold back tears a professional tell me this.

diddly I thought heparin was from BFP (which would be weekend before we go on hol) but he said it would be fine for me to start taking it the week after when we got back. I would ask tomorrow though as it might be specific to me that it doesn't matter if it's late.

Regarding the prog 400mg, I also conceived 1st/2nd time so not sure if this makes a diff to why I'm on higher dose. Maybe he just thought my lining was in a worse state....

Becca the pregnancy I just lost felt like a really strong one. Good line at 8dpo, hit all the milestones with the conception indicator, great scan at 9 weeks, baby didn't get to 12, measured 11+2 I think. My gut is the first mc was hormones as if just quite breast feeding and I started bleeding and spotting from BFP, second MC was non viable from the getgo as I got my BFP after my period ended - my HCG peaked at around 200 but my god that miscarriage dragged on for so long!! This one was either chromosomal or clotting issues in my mind but I'm not sure I'll get that confirmed.

Each loss can be different or there can be a pattern as Tanny says. I imagine it's an interesting thing to study although sadly it's a heart breaking subject.