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

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Hi HappyBeet86

Sounds like you have been through the wars. Some Drs are just so inconsiderate. When I went to have a scan during my first MC, just I was about to go in I received a phone call to say that my grandmother had died. It was awful, I went in crying and the doctor was so uncaring.. I changed straight away, luckily the new one is much nicer :) Glad to hear your new consultant is so different

Congrats on the pregnancy! I think a little bit of cramping is normal, I was told it is because the uterus is growing.

Are they not able to remove the septum? (sorry if that is a stupid question)

Hi, I've been reading through the thread and its been great to read about other people's experience (although horrible anyone has to have them)
My basic info:
1 v early mc @ about 5 weeks - + test and then a period a day later.
1ds - bleeding throughout, pre eclampsia & early assisted birth may have caused some damage but never followed up.
3 confirmed mc since- 1 @ 6 weeks, 1@7 and now a mmc @ 12 (baby stopped at 8ish weeks) and had medical management on Tuesday.
Now referred to the recurrent mc clinic but need to wait 3 months for everything to settle down. Holding onto the idea of getting some help to get through the rubbish bit right now!

Wow I've not been on here in a couple of days and the thread has moved so fast!!

Welcome to all the new people (if I've remembered right from my quick catch up on the thread: sophie didwedo gakay and beet. Sorry if I've missed anyone!). I'm sorry you've all had losses which bring you to this group but I can say with hand-on-very-emotional-heart this is an amazing group....a wonderful gang of ladies who have kept me in one piece through the hideousness of my 4th mc last week.

Will catch up properly on thread later but just wanted to give a friendly South London wave to didwedo - I was with Kings for my first 3 mcs (and my DD between mc1 and mc2). Now with St George's as we've moved since last mc. Not overly impressed with St. G's so far but hopefully things will improve :-)

missie I was at St G for my first 2 mc's and was not impressed at all. Am now at Chelsea & Westminster and the drs there are much friendlier. Did think about kings and in fact have all my other medical stuff there.

It is a lively group and was a comfort to me even when I just lurked about

Peqpit that was an option at one point. But after my 3d and mri the old consultant (and doctor he sent me to see) were both of the opinion that it would cause more scar tissue and issues than would be worth it. Something to do with the shape ( dent at the top is very deep) and the septum length.

Sadly after seeing for herself lovely consultant agreed.

I just tell myself that one made it so there's always a chance!

Considerphebas I'm sorry for your loss, it's a really crap place to be isn't it. I think it's one of the most horrible times, just waiting around. Hope you find all the support you need

considerphebas I'm so sorry about your recent loss (and the previous ones too, of course). I'm in a similar ish place to you-had 4th miscarriage last week and now just feel like I'm counting weeks until I'll get test results and maybe (not perhaps not) get some answers. Feels strange and a bit sad not be heading straight back into ttc after next cycle but like you I'm going to give my body (and soul) a bit of time to recover. Three mcs in 14 months must take some toll.

Hope you are being kind to yourself and you're being well looked after x

gakay I had a shocking time at George's last week. Not been to rmc yet (waiting on referral) nor seen the apparently v good Prof there. So really hoping things improve when I get to that bit of their 'system.' Not holding my breath though so am exploring other avenues just in case. We shall see...

Hi i feel like im always so busy and all i want to do is have a read through whats been going on this thread does move fast which is great! Stealing a minute before work to say cramping on and off yesterday but only for a minute or so. Due on tomorrow and last m.c was 4 days later so getting to next weekend is my first milestone! Have a great day ladies and i will have a good read through later as i know some people answered my message about cranping yesterday

Thank you Marchgirl for your reply about my cramping yesterday, I bet everything I am going through you have been there and done over the last 12 weeks! What a rollercoaster this all is! I am so happy for you to be where you are now when I know how hopeless it can feel at times! HappyBeet86 I am really pleased that your scan went well! I suppose if I didn??t feel anything I would also be concerned! I am keeping everything crossed for you and thank you for your reply yesterday it always helps to hear what others have been through and if its ??normal??

Goodness happy what a time of it you've had. Welcome and so pleased things appear to be turning a corner at your new hospital.
sophie i hope everything is working out for you. I feel for you its such a worrying time.
gakay i'm thinking of coventry next too. It certainly sounds like they could be of some support to you.
I'm acutely aware its 5am but having one of those nights. Brain is overactive, i have my nieces staying here (3 and a half; and 5 months) and they've been up most of the night too.
I'm having the dreaded delayed reaction to the mmc a couple of weeks since. Sorry in advance for a whingy post:( i was kind of expecting this to hit at some point after the initial being in a 'bubble' feeling.
I've kept OH awake some of the night due to crying. I feel a little better for letting it out. But i'm left with the angry pit of the stomach feeling and i hate it.

And i'm irritated with the situation with a friend of mine. She is back on the scene after being absent for about 6 months. She wants a support network and to make more of an effort with her friends now she is pg which she announced last week. She hasn't said that to me - that would sound insensitive wouldn't it - but i know she's shared it with others in the group. Fair enough i guess. She moved about an hour away around 2 years ago and now feels she just lives in her hubby's world, his family and work are close by. She left her friends and family to move there. They feel his family haven't been very supportive about their announcement, this is b/c they have another son - he and his wife have been trying for 4 years and have had several failed attempts at IVF. I can see why they don't have the bunting out!! They must have been dreading this moment. But i'm aggrieved i'm expected now to rally round. I haven't felt particularly supported by her over the last year or so. Don't get me wrong she is always lovely the times i do see her but is no where to be seen in between.
Anyway i relayed this tale to OH and he was all 'holier than thou' about it. Why can't people just be happy for them? Families should be happy for them its not their fault about the other son. (I bloody know that FFS why can't you just agree with me when i'm annoyed...even if it is irrational and probably none of my business). What i actually said was...you've never felt this is remotely unfair that it just happens for some people? And you can't see why his family have to be a bit sensitive to the other couple?...it shouldn't be like that he says. I was happy for my brother...(erm i wasn't!) And at first i really struggled to be happy for my own sister but i got there. (I don't mind admitting it about his brother, and its a whole other story i'll tell another time frankly i think i may have been justified that time).
Anyway, ranty and whingy...sorry girls but i feel better for sounding off! At 5am xx

Just read that back and realised that it sounds like my friend has a son. She doesn't. Its her brother and law and his wife that have been struggling. That would have been a more succinct way to put it! X

Hello newbies,although very sorry you find yourselves here. I hope we can offer some support x
hels, sorry about your friend who sounds like she's being a bit selfish. I hope it's just that she's realised she made a mistake in cutting you all out and is now going to mend her ways, but I'd probably be treating her with caution as well.

Hi ladies, so sorry have been awol. Back at work and it is full.on.

Welcome to all the newbies. Gosh it's been quite a couple of weeks for new faces on here! Am so sorry you find yourself here. This thread is a lifeline and you will find a lot of support / knowledge on here.

hels sorry the 5am fears got you. It's always darkest just before dawn. How are you feeling this morning? Knackered I bet, crying always totally wipes me out!

Sorry DH isn't being very empathetic. If it's any consolation mine is exactly the same. When I share jealous/bitter thoughts about other people he just cannot understand it and actually gets quite cross with me about it. I've stopped telling him. I just don't think it's the same for them. It's a primal thing, I'm sure it is.

And your friend sounds like she's a bit annoying. I can never understand why someone would expect to be 'supported' by PILs about a pregnancy. What are people supposed to do, short of saying congratulations?! And with the added context of her BIL and his wife struggling with infertility .... she sounds quite selfish and self centred IMO. I would be avoiding if I could.

As for me, AF arrived this morning, 33 days after the MC started so am grateful my body seems to be playing ball at getting back to normal (crosses fingers). Still not actually seen newly pregnant best friend but in text contact. Harbouring disgustingly jealous thoughts. Even a text from her yesterday when she mentioned being tired sent me into a jealous rage. I'm starting therapy sessions next week to try and help me deal with this.

Thanks March i do feel a bit like i've been petty now in the cold light of day. Of course OH has felt those things he was probably just being more objective than me in that moment, in my tired and who knows what kind of hormonal state. I'm going to have to apologise to him, but thank you again for letting me vent in a not very coherent way! I don't think my friend is even the problem i just feel sad for us xx

monten sorry crossed posts! Thank you you've made me feel a thousand times better. Yes i'm knackered my eyes are about back to.normal size but they sting.
Oh god love you, yep i'd be the same, why on earth would you want to know she's tired...!
Its not the same for them but my OH can swing from one to the other. I just caught him on an annoyingly positive upswing. But i was bloody fuming with him ha!

Therapy sounds like a good decision take matters into your own hands.

If my rage sticks around i think i'll see mine again too. I don't like feeling this way, its not really 'me', or at least the old me xx

Hels268 that sounds really tough, you probably don't need anyone around that's going to be a drain on you right now.

Well, it's been a drama fuelled day for me but moving past that I have something really gross to share that has made me very happy!

Tmi warning: I have had two BM's today....and no bleeding! This is the first pregnancy where there hasn't been a lot of blood involved with that!

I'm hoping this means I've been given the progesterone not placebo, or that my cervix is finally toughening up!

happy got everything crossed for you. Willing it to go well.
Though things went wrong again for us this time (for a reason we think that was nothing to do with the progesterone), i really felt the progesterone was a helping hand. It was at least a little peace of mind.

Fingers crossed for you happy and hope the progesterone work well.

I'm having a rough day, my Mum came up for a few days but has now gone home and the bleeding has settled right down (which is making me worry it's not complete) and I just feel incredibly sad. All I want to do is go to bed and hide under the duvet for ever. Which is not the mature and sensible way to deal with life but is very attractive right now! I'm also not sleeping well and crying randomly . How long did it take for people to feel less awful? I've never felt this bad after my earlier mcs.

Sorry, a dreary sort of post but I don't know anyone on real-life who's had a mc and no idea how long these feelings should last.

considerphebas its so individual i can only really say for me its been a little different each time. Overall its a mixture of good and bad days. Its perfectly understandable to feel the way you do its okay to be sad. I had rotten day today nearly two weeks after my last mc, but other days i've felt far stronger. But i don't think you can say there is a limit. There will be times the bad days are few and far between.and those will be the better times. I hope you have support and know too that we are here anytime. Be kind to yourself and give yourself time xx

Sorry you had a bad one yesterday consider. I think the mental recovery time can vary quite a lot. Some of mine I've been ok quite quickly, after a few weeks (esp after the earlier losses), but after the third it took at least 9 weeks before i started to be able to function normally. I think that one hit me hardest because it was the third (which the nhs puts so much onus on being the change from 'just bad luck', to accepting there might be something wrong), and because we didn't have a break before ttc again that time, and i just don't think i was ready. My advice is don't give yourself any timescale for when you 'should' feel back to normal, it just sets you up for feeling more rubbish when you aren't, like you've somehow failed. There really is no way of knowing when you'll feel better, you just have to take a day at a time and know that eventually it will get better. I would recommend counselling too. You've been through a lot, so don't underestimate that, and talking to someone can really help. I wasn't really a counselling type but got 6 free sessions through our employee assistance program at work, and it's really helped.
Don't underestimate the importance of good sleep in making you feel better either. Everything feels much worse when you're tired, so if you need to hide in bed and catch up on sleep for a bit, them just do it.
Hope you're feeling a little brighter today xx

just a short note to check in and say hello. i haven't been here in a while nor been able to login for ages using safari and turns out it all works fine in chrome, after resetting my password. apologies in advance for the rant. i'm a bit confused and would love mn collective advice.

for some stats - 33 & DH is 35. no dcs.
-mmc1 was in mar14, discovered at 12w scan, measured 9w6d. ERPC
-mm2 was in sept14, discovered at 12w scan, measured 6-7w. ERPC.
-mmc3 was in jan15, discovered at 9w2d, measured 9w1d, after wonderful scan at 7w3d. ERPC under local (highly recommended).

• referred to St Marys and UCLH. 14 weeks wait for UCLH & 13 week wait for St M.
• used the 13 weeks to read every bloody book out there. had my GP agree to do the basic tests. had a private fertility MOT (ahem groupon voucher) that showed i had the ovarian reserve of a 44 year old.
• AF returned 10w after mc3 (returned 4w after mc1&2).
• did the Greek hidden C and life code tests. tested positive for ureaplasma & took 25 days harcore antibiotics with DH.
• St Ms appointment was shite - less than 5 min. referred me for a hysteroscopy with a 16 week wait.
• went private for hysteroscopy (nothing wrong, except damage from badly performed ERPCs).
• had chicago tests done (high peripheral NKs, 25% DQ match with DH). advised LIT and intrapilids.
• st m's discharged me recommending aspirin.
• went to coventry (normal uNKs)
• decided to go with coventry's treatment as is considered "world leading" and is more recent advances in research than the chicago tests/immunes. (but also because wanted to ttc right away and didn't have the money/time to get the LIT/intrapilids before the cycle). prof q recommended against pred because i still need some NKs to survive a pregnancy.
• ttc cycle 1 & 2 following coventry protocol in july & august, bfn
• ttc cycle 3, ovulated super early and managed to get a bfp. finally. almost nine months after mc3. but if i'd waited for that hysteroscopy from st mary's i'd still be recovering from the operation now.

i'm excited but worried. mostly because...

• decided not to put my life on hold and took a secondment in spain for three months. not enough time to register as a resident but enough time that it is hard to go back to london very often. murphy's law right? but i dont want to count on this working out and telling anyone at work before i have to...
• coventry only operates monday and friday afternoons, which are hard to get off and there's not many flights to/from birmingham that line up
• my friendly GP has gone on maternity leave and there's a 12 year old filling in her files who isn't keen on prescribing me anything.

did anyone end up using crgw for private prescriptions? did anyone rely on coventry for their first trimester? do i need to see anyone except coventry before 12 weeks, eg blood tests? it's very early days but not sure what to do from abroad except pay to see a doctor here (i'm not registered as living here as it is only temporary so can't use the public system...). any advice or suggestions welcome. it's a good problem to have right?! sigh

end brain dump rant

consider, the same as march, it took me until 9-10 weeks until the random crying stopped (including in work meetings a couple of times - one time uncontrollably in front of an evil boss who turned out had two miscarriages and then a baby at 43). i wish a much shorter time frame for you. this ridiculously long enforced break has really helped though. i feel more normal again, more like myself. i don't hate pregnant people as much. i still have triggers like scan photos and bumps announcements. i don't wish a 6 month break on anyone though, 4 months is a good time to deal and get extra tests done if you're lucky.

hello to everyone who's joined in the last few months. sorry that you've joined the sad club. but there's so many pregnancies on here and good news stories, it will keep you inspired and motivated for now.

omg that was a long long post. sorry :/

Morning all!

Welcome consider. Sorry you had a shit day on sat. It took me a while before I felt better about mc1, it hit me really hard. The last time I remember roaring my eyes out was in February (it happened in sep14). But I still feel sad about it. It will never leave me. So give yourself all the time you need to cry, be sad and grieve. It will always be there but it will become less raw. Big hugs.

happy good news about the lack of blood, I'd take that as a good sign and add it to the 'list'. (I think it was you who me n March mentioned the list to..?)

Whispered congrats texta. Wow, I think it's fair to say you've really done all you can in terms of testing. Hoping the Coventry protocol works for you as it has for so many on here. Sounds like a tough position to be in re work but it's good you took control and didn't let mcs stop you, Sod's law eh??
I needed a location scan at 6wks before starting heparin, then had fortnightly reassurance scans at the epu. I never needed to visit Coventry during first 12wks but in understand they'll do location scan of you can't get one. That's a bugger re your GP. Mine wouldn't prescribe at first so he referred me to a gynae so they could ok it, then he prescribed them no probs. I understand that Coventry will do private prescriptions if required. Good luck! X

Congrats on the bfp texta! Keeping everything crossed for this one. Like bumble, i didn't visit coventry at all after the testing, but if you are struggling to get the heparin and progesterone prescribed then I think they would do it for you following a location scan. Did you end up seeing someone at uclh? Perhaps they would prescribe for you. My rmc consultant prescribed progesterone, and eventually agreed to prescribe the heparin after i bombarded her with a few research papers about it (still refused the steroids i needed for high uNK result, but my gp obliged). Might be worth going back to the consultant if you're able to, but i can see that will be difficult from Spain. Would coventry post you out a private prescription for the heparin if you had a private location scan ? Would be worth getting in touch with them to ask, as it might save you a trip there. Fwiw, I think you did the right thing about Spain, and good on you for taking the plunge. It's too easy to put life on hold while we go through this (I'm definitely guilty of this), and then feel disappointed that you've missed out. I think a busy job in a new place will help the early weeks go faster as well if you're distracted, which will hopefully make it a touch easier. Best of luck for the job as well as the pg. How far along are you?

Hi texta
Congrats on the BFP!!
What part of Spain are you in? You should easily be able to get heparin and progesterone on a private prescription and perhaps possibly without a prescription! Depending where you are I can recommend a English speaking gynaecologist that might be able to help

thanks for sharing your experience bumble. six months is a long time to do nothing, so tests are what kept me going (lame right). i??d thought all along that i had bad eggs (pre-mature menopause run in the family), so went ham on the tests the chromosomal testing on mc3 came back normal. did you have a booking appt with bloods in week 10 at epu or did you wait until 12w? also good to know coventry do private prescriptions!

thanks too march and congrats to getting past first semester! it must be a relief. i??m literally at the beginning - 4w2d maybe? i got the bfp on 9/9 but think 4w is around 12/9. who knows what will happen this time around but definitely hope the job is a distraction. didn??t end up at uclh as their website states they are firmly anti-immune treatment (and was obsessed with chicago tests at that time). really wish i??d gone somewhere neutral like guys and st thomas??s.
will def ask coventry if they would post a prescription - great idea!!! i need to find a scan place next. i??m dreading the thought of someone who??s not a great english speaker delivering me bad news in a scan room. eek. gotta stay positive!

hi peqpit i??d love some advice. i??ve had a hard enough time getting diflucan here (!) so i thought progesterone and heparin might be a struggle. i??m in barcelona and would love any suggestions, as perhaps a spanish gynae would review the coventry letter and assist. thank you :)