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

[Justonemoretime]

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 :)

Hugs Tanny. I agree with longest look after you and the baby 1st. Everything else can wait. Call in sick if needs be!

Flen your 'friend' sounds like an insecure bragger!!! Hope you're ok. Maybe send her a text to say how hurtful you found it given your mcs.

Are you ladies all on FB? I left years ago as found it all too painful. Have to say I've never looked back, my life is much happier without it.

Tiny I live near Wolverhampton but if there were to be a meeting in London I would gladly hop on the train. Probably couldn't manage it this side of Christmas though!

Waving good morning to all of you xxxxx

((((tanny))) hormones are a bitch. Have you spoken to MW about it? I often have a sort of mini-breakdown after an intensely stressful period is over - do you think it's a reaction to the stresses of early pregnancy?

flen, your friend sounds very insensitive. Whilst I'm quite sure she wasn't aiming the comment at you, she needs to think a bit more carefully about what she posts. I'm on a very minimal news feed list of people due to a lot of unthinking comments.
Sorry you're having a difficult time tanny. I had the same kind of dreams with my first pregnancy,where i was wielding axes and murdering people. It was horrible and really scared me. And that was before I had the anxiety of any MC, so I imagine things are a million times more difficult for you with that as well. Hugs

A friend just announced on Fb. Due next summer. Has shaken me. I could be next, or I could be not at all. I want to hibernate.

Thank you everyone for bolstering comments! I tend to always think it's me being overly sensitive, so it's good to feel validated!! Thank you for the link, just, I might well be brave enough. It is a great piece of writing. I think I am upset because it seems like an insensitive comment, but it also cuts to the heart of "my stuff" about life limbo etc.

Tanny lots of hugs to you. It is such a hard process with so many bewildering feelings. Give yourself nice things and hang on in there.

Belle let's find a place to hibernate. I am up for that.

belleende I'm so sorry you've been baby bombed too. Facebook is so evil for ambushing like that. I've had one announcement from a friend this week and have 6 ones due to have their babies by the end of the year. I have now strategically blocked/unfollowed all offenders and those who are likely to blurt something out in the near future. (The biggest friend faux pas was my own bridesmaid, who's wedding I dragged myself to while still bleeding from my first miscarriage. And she's aware of my recurrent loss. But she sent me a Facebook message to announce her pregnancy and whined about feels bad for falling falling pregnant so easily- but it was difficult early on. Not that difficult - she's still pregnant) Then changed her cover pic to that of her scan pic within 5 mins of letting me know. Nice. I also got pissed off by Rebecca Adlington's announcement and Kate Middleton and sod right off with her smuggo baby bump too.
I second your hibernation. I'm still completely ignoring christmas and so desperate for 2015 to start so i can put this awful year behind me. Sorry, I didn't mean to rant quite so much but I know only too well that stabbing pain of pregnancy news.
Big hugs.

Definitely wishing 2014 over as soon as possible. Worst year of my life. Hoping 2015 is better for all of us x

Just spoke to the hospital - the genetics results are there, but the secretary is not allowed to give them to us, so she is going to ring tomorrow afternoon and read the consultant's report after he has written it in the morning! I am now weeing my knickers with anxiety and imagining all the worst case scenarios.

When did you have your early reassurance scans? Just spoke to the EPU at my local hospital who said they won't do it until 8 weeks - and because I'm away over Christmas, it probably won't be until January. My dr told me it would be 7 weeks, so I thought I'd know where I stood before Christmas. Now it feels like a lifetime away, I'm so gutted.

I called in sick today so I didn't have to go to London, because it's the day that two of my three miscarriages happened and I'm too scared to do anything in case something goes wrong again. These next few weeks are going to be the worst. Anyone got any advice on getting through them when your problems happen really early and there are no scans or strong symptoms to stop your mind going into overdrive?

Sorry you're anxious about your results flen. I really hope you get them soon but nothing you do or did will change what happened, and genetic issues are quite rare, so try not to worry
Francine, I was also offered reassurance scan at 8 weeks last pregnancy and it felt like an age coming. As it happens I ended up getting one a week earlier as I lost all my symptoms and knew something was wrong. I'm sure they would scan earlier if you had any specific concerns before then. The midwife at our psc (epu) told me that if, for example, I had one sided pain or even a bit of spotting, I'd be seen straight away - she was hinting at how to get a scan. Not sure this is entirely ethical,but something to consider.
All that said, there is something to be said for having a scan after the danger period, as at least then it will be definitive. That doesn't make the waiting any easier in the meantime. Only advice would be to make lots of plans and tasks to keep yourself busy. Hopefully the busy-ness of christmas should help

francine could you get your dates slightly "confused"?

Massive group hug to everyone feeling low. tanny I agree re talking to the midwife. Hope she can help.

I'm new here and so started a thread - it hasnt got any replies but maybe it would be more approppriate under this thread. So i have copied and pasted below.
I havent had a chance to read all these posts but im sorry that we are all here.

Hi Ladies,

I have had 3 miscarriages this year, the most recent was August this year where we had previously seen a heartbeat.

The first was January, first month of trying after the pill. HCG not rising appropriately, mc at 6 weeks. Cared for at EPAU.
The second was in May, this was a chemical and i was showing positive on tests for a matter of days and then started bleeding. Too early to even get to EPAU.
The third was complicated and in August as mentioned above, this was a MMC. For this pregnancy i was taking 5mg folic acid and low dose asprin. Opted for the medical mannagement, had the tablet and was allowed home as the baby was measuring less than 8 (Measuring 7+5) bled for approx 1 week. Kept calling EPAU as something didnt feel right, still showing positive on tests, they advised to leave it another 2 weeks before testing and call back if it was still positive. 10 days after the tablet i had terrible pains all day at work and started haemorrhaging at approx 5pm, rushed to hospital where the surgeon confirmed that the baby was stuck in the neck of my womb - he had to remove it then and there. I will spare you the detail but my cervix is very tilted and i was awake: this is the worst thing ive ever been through.

So after that i was allowed to attend the recurrent miscarriage clinic in sheffield, i had all tests apart from HSG. This was due in part becuase of the 3rd miscarriage complications and im still emotionally scarred from that and also, i dont believe my tubes to be blocked as i get pregnant very quickly. I dont believe i have fibroids as my periods are not heavy. I dont believe i have a womb 'defect' as i was able to carry to 12 weeks term when i was just 17 (I was on the pill and had no idea i was pregnant, please dont judge me - i was in education and didnt feel i was ready for a child so i had a termination. You dont have to hate me, i now already hate myself for that decision. Hindsight, eh)
I also - when on the pill - had an ectopic pregnancy at the age of 20, this was due to the pill i was on allowing me to ovulate but slowing the mobility of my tubes, i had a laparoscopic diagnosis and the pregnancy was removed (at 12 weeks!) but the tube was saved, i am astounded it didnt rupture.
Taking into account all of the above the consultant said he thought i was 'probably' right and that the HSG wasnt necessary.
The internal scan i had as part of the investigation was normal and he said that this was 90% accurate so i dont feel too obsessed with the HSG part.

All tests are now back and 'normal' i asked about NK testing and he was dismissive but said i could have it privately (they do it for failed IVF on the NHS but not miscarriage, i am not against paying for it and will if anyone has experience?) His words were to just try again. I am not happy with this kind of approach and told him i wanted to be more proactive, he agreed i could have progesterone supposotries from getting a positive test. I forgot to ask about HSG shots, kicking myself now.

I'm sorry for the long story, im just desperate for advice and dont have anyone who has been in a remotely similar situation. Can anyone recommend anything extra? Am i missing something? Has anyone been through similar and got a baby without anything other than progesterone? Im at my wits end, i just want to stop feeling like such a failure and be a mummy.

sizethree - Could not agree more about kate middleton, i even sent my husband a text when it was announced that she was pregnant again!
Sorry to hear anbout the insensitivity of your bridesmaid, i have also unfollowed a lot of people this year, it seems to be a constant.
My biggest problem at the moment is my SIL, shes my MIL's favourite and at a family party she'd had a drink and told MIL that she wont be getting pregnant yet as she 'couldnt do that' to me, this is not true, shes still smoking drinking etc and i know that my BIL wants her to quit those things bbefore they try and theyre also looking for a house to rent etc so i know its not planned for imminently but rather than say to MIL that theyre not ready yet she uses me as her excuse so that now it looks llike shes a saint and im some baby stopper - very annoyed about that one, you may have sensed it!!

Hi ourday and welcome - I'm sorry for the shitty time you've had. I had a similar experience (baby stuck in cervix, uncontrolled haemorrhage) with my first miscarriage over 5 years ago and I still have very unpleasant flashbacks occasionally
Many of us have been up to Coventry to the implantation clinic run by Profs Quenby and Brosens - they do a uterine biopsy to test for decidualisation (how the womb prepares for implantation) and NK cells. It's a self-funded NHS clinic i.e. non profit making, and it costs £360. You can self refer, and you need to be at least 2 cycles post MC, definitely not pregnant, and 7-10 days post ov. Their standard protocol is progesterone from day 21 of your cycle (the thinking being that once you get a BFP implantation has happened and it's too late to start progesterone at that point) heparin injections from an early scan showing the pregnancy sac in the right place (this is to protect placental cells, not for it's effect on clotting) and if you have high NK cells, steroids from a BFP. I successfully had a daughter on that protocol in May after 3 consecutive miscarriages, with a high NK cells diagnosis, and there are several other Coventry pregnancies on the board progressing well. Both doctors are lovely, very down to earth, I had no suggestion that they were in it for the money and would have no hesitation recommending it. You only have to travel once, they do a telephone consultation to give you your results about a month after the appointment and give you a written protocol to take to your local GP/EPU/RMC.

Yes, let's hibernate, I am so up for that. I'll bring cake!

bakingtins thank you for your reply, I am so scared of a future pregnancy due to that - i really dont know what i'd do.
Thank you for the info, i will look into that straight away, can you tell me more about the biopsy part - how its performed, whetheryou were awake? i had already looked at Dr Shehata and his appointments are booked through until the end of Feb but i'd like to try as soon as possible as the longer i leave it im afraid the more scared i will become. I am so sorry for your losses but congrats on your DD.

Hello ourday. Sorry you find yourself here and for the awful time you've had this year, but you're in the right place for advice and support, these ladies are brilliant. Don't worry about being judged for your past. Sometimes a termination is the right thing at the time and you should never be judged for that or regret it. It is what it is. Glad that you've had all the regular testing. The normal tests seem to include all the clotting ones plus a scan. Some hospitals do karyotyping on the parents for genetic disorders, although this isn't standard on the nhs now unless tests on the foetus come back positive for a genetic condition. Have you had any testing on the foetuses?
There are also other tests that some doctors carry out, such as thyroid tests, but this isn't done routinely. St Marys in London do other blood clotting tests and profs quenby and brosens at Coventry test for uterine nk. This treatment is self funded nhs rather than private and is apparently about 360 quid.
Most of us have been prescribed progesterone from bfp (or from cd21). Those with clotting issues are on heparin and aspirin,but latest advice is not to take aspirin unless you're diagnosed with a clotting disorder as it can interfere with implantation. Others have links to research on this.
There is loads more to say but that gives you a start. Sounds like Coventry might be a good option for you and as you are more than 2 months since mc you could get an appointment fairly quickly I think. Others can say more about this.
Hugs for what you've been through x

Sorry, cross post. baking was able to tell you much more!

ourday. Welcome. Baking has given you the best info about the nk cell testing. I just want to give you a big hug and say you have found the right thread for advice and support, and hopefully some reassurance that even if no cause is found for your miscarriages, the chances of you having a successful pregnancy are stil good. I am one of, I think, 11 women here who are currently pregnant and for whom things are currently progressing well, and I have no diagnosis or different treatment this time.

Please don't think you will be judged here for your termination. We all make the best decisions we can with the knowledge and circumstances we find ourselves in at the time. I imagine I would have made the same decision in your shoes. Have you considered speaking to anyone about the feelings you have around this? Others on the thread have been to counsellors who specialise in miscarriage, although it's worth saying their feelings about how helpful this was vary quite considerably.

I am sorry your ILs are making life even more difficult than it needs to be. Feel free to rant here as often as you need to.

i'm a Coventry pregnancy at the moment - 21+5 and counting...
(had 5 mcs in total)

So I am waving pompoms for them...

Regarding Kate Middleton, I think she is due a couple of weeks after me, when she announced it I was still in my risk time and was bloody scared as if i mcd again i would have her reminders in my face all the time...

I am overwhelmed at how lovely you all are - look at all these replies, i'm teary yet again! Thank you all for being so understanding re the termination, it was with my husband but we were both too young but now im panicking that was my one shot and this is the karma im left with. I havent had councelling for the termination but have found a great deal of help from the Miscarriage Association, so much so that my husband is running the london marathon on their behalf in April - theyve been fantastic.
With regards to tests, my hubby had his sperm tested (fast and apparantly 50% more than average - so im the dud one!) and we both had chromosomes tested. I had the clotting, hormones and thyroid too. And the scan. I am interested in the NK idea, it wasnt something that the consultant was keen on, his words were "It would be like counting the number of pigeons in trafalgar square and using that to try and accurately say how many pigeons were in the whole of London" he also said the numbers of the cells change all the time. I think hes a speciallist in womb abnormalities and has performed a whole host of corrective ops and didnt seem to be very conducive of anything else. I wasnt very impressed to be honest, he walked in, didnt introduce himself, no handshake - yawned at one point and looked at the clock twice! He was an hour behind but that wasnt my fault, i'd have rather felt that i wasnt under a time constraint.

And congrats longestlurkerever its so comforting to know that there are another 11 people too. I am glad i joined this thread.

Welcome sasha. I am sorry for your losses, and the circumstances in which they arose. Mmcs are awful. The nhs don't normally refer you to the recurrent miscarriage clinic after 2 miscarriages (which is hugely frustrating but reflects the fact your odds of a successful pregnancy next time are very good) but it's worth pushing for what you can as gps can order some basix testing and some sympathetic gps are willing to refer sooner if there are other factors, which your suspected molar pregnancy may count as.
I recognise a lot of myself in what you write. I am one of quite a few on the thread ttc dc2. I am pregnant again and have come to terms with the bigger than planned age gap and am even looking forward to some of the positives (dd will be nearly 4) but it is only since I have started to believe this one might actually work out that I have been able to adopt this attitude.

ourday your SIL sounds like a right pain in the arse. Sorry she's being so insensitive. I'm hoping her heart is in the right place but the clumsiness and sucking up to your MIL sounds infuriating.
My sisters have 4 children between them but my husbands family are still waiting for their much anticipated grandchild. And after 3 miscarriages it's getting more and more uncomfortable to see them as I feel I'm failing them too. But enough gloom and doom already!
So I just got my appointment through from the Recurrent Miscarriage Clinic. It's not til blooming middle if March! Which is. 16 week wait from when my 3rd miscarriage was diagnosed. That's A QUARTER OF A YEAR! Is that standard waiting list time? It's just that it's an awfully long time for no progress at all and it sucks.
Hello to the newbies and so sorry you're here. But in the worst of times it's the best place to be!
Hello to everyone else abc thanks for all the information. I'm not up to speed with everyone's name and history yet (and impossible to scroll much on tiny phone screen) but I am thankful to be in such good company.