Recurrent Miscarriage Support - tests, treatment, trying again - thread 12

[bakingtins]

Welcome everyone! A thread for anyone who has suffered recurrent losses and is in need of support, information, moral support or tea and sympathy. Newbies very welcome.

Please can we start (as is traditional) with a recap of where we are on 'the journey'.

Happy birthday lurker

Hi everyone hope your doing ok

Just a quick post as I'm really ill with morning sickness, can't lift my head without chucking up, trying not to get too excited but this is a good sign isn't it? Scan not until next Wednesday, don't know how I'm supposed to go to work though

Happy birthday longest

triple no appointment yet, bloods in 6 weeks and then an appointment with the consultant 5-6 weeks later to discuss results.

Good luck for those with scans coming up....

Happy Birthday longest

purple hope that is a good sign, if pretty unpleasant for you at the moment. Good luck for your scan.

Wow, had my head down for past few days getting back into work and it's been really busy on here!

Longest & Purple- yeah so far & fingers crossed

Twilight & Charlie- big hugs x

Barrelita- sorry for loss and welcome to a very supportive group of ladies x

Everyone else- waving at you x

Right back to getting my head down and trying to catch up after last mc.

Hi all, just checking in as home from France today - lots has gone on in a few days! Had a nice relaxing holiday but now feeling nervy about going back to work tomorrow - it's my first day back after MC...

girlie thanks for the inspiration! Sounds like you're getting your teeth into work xx

HB longest hope you're enjoying it

charlie hope you're feeling better today

purple great news on your morning sickness. Can only be a good sign x

Waving to everyone else! Hope everyone is ok, welcome to all new ladies and sorry for your losses

Any Bristol ladies had any experience with gynae team at southmead? I got my referral through for my dermoid cyst removal whilst I was away, and the waiting list at st mikes is way too long so going to southmead in November.

Bristolian- good luck tomorrow. Think the anticipation is worse than actually going back. I'm sure you'll be fine but remember to give yourself plenty of time to adapt being back and it's ok for it to feel a bit odd x

bristolian I've seen the rather wonderfully named Dr Valentine Akande, and Dr Uma Gordon. I particularly liked Dr Akande, found him very kind, but my view is probably coloured by him overseeing my successful pregnancy and Dr Gordon treating me during a failed one. I don't know if they've moved into the swanky new building, the Cotswold Centre is a bit run down. Allow plenty of time to park because it can be difficult.

Thanks guys xx

Hi all, been crazy busy with no time to check in.

Welcome new people, hope you find support here.
To those waiting for scans, hoping the days speed by.
Hugs to those fee!ing low.

Apologies for not mentioning everyone..a few days away and things speed along.

And apologies for being a bit me me me...
I had a follow up at St Mary's yesterday with Prof Regan to discuss the results of my last (chromosomally normal) mc. Bottom line is nothing found to be wrong with me (after some clotting confusion, with the conclusion that that's normal too).

Her advice was to keep trying if I can stand it. I brought up NK cell testing, explaining that I knew St Marys didn't do it but I felt I had to throw everything at this. I was trying to be diplomatic, as her views (that there is not enough evidence surrounding NK issues to justify testing people, and that she does not agree with the protocol prescribed for it) clearly differ from, for eg, the Coventry team.

I know she is always very direct and has a certain way of saying things, but I felt like she was...hmm..frustrated with me, and the whole NK debate. To make matters worse, DS had to come too, and after nearly an hour and a half waiting for my appointment, he was fed up. He roared at her. She said: "NO. Now young man that is not acceptable behaviour". (I was about to say that to him but she got in there first). He roared at her again. (Later he explained that he just wanted to go home - Me Too!). At that point I exited as quick as I could,and spent the rest of the day trying to get a grip, (had to go to work) and feeling utterly confused and despondant. It's SO hard when the bloody consultants can't agree.

Has anyone else had this issue? I think I will go to Coventry anyway, and get their perspective, but I feel like the whole appointment with prof Regan was 'off' somehow.

Oh dear, Bootles, it can be so frustrating, can't it. The last time we were there, DH's father had just died 2 days before and we were like a pair of zombies... not in a fit state to ask any of the right questions! I hope you're OK? I'd get in touch with Coventry. It's £360 and they are very good and making you feel listened to and taken seriously. Good luck!

Triple, thanks for the info on the Hycosy. My GP has already faxed the request over to my local hospital so hopefully I won't have to wait long. I'm looking into the possibility of going private for it, too, as I feel like we've waited long enough and I want some kind of answers/action!

Belated happy birthday, Longest.

Waves to everyone! xx

Oh dear bootles, terrible when they go on about their egos... I'm a Coventry fangirl so far...

just she actually said she wouldn't stop me going to get my NK cells tested, but in her opinion its 'a waste of money'. At this point I do need to be taken seriously, and will definitely go to Coventry to get their views.

I hope your HSG goes well..I haven't had one, but understand its a straightforward day procedure. Is it coming up soon?

Also had a conversation with genetic counsellor I saw after loss 2, just to talk through any implications after getting the results of the 4th loss. She is really good. She did say though, maybe I need to start thinking about how many more attempts I can put myself through. She's right.

Hope everyone is ok this October morning - how is it October already!

Thanks tiny, hope you are doing ok. You must have a 12 week scan coming up soon? Definitely too many ego's knocking about. I should get a positive opk today/tomorrow, then will book my appointment in Coventry. I have to try everything, and can't be put off by one view.

Sorry just just seen that you are waiting for date of HSG, so wouldn't know when it is - hope its soon and you don't need to go private..

she said she wouldn't stop me that would give me the rage

bootles it sounds like you are pretty much where I was last summer, knowing a 4th MC was genetically normal, being told there was nothing they could find wrong with me, go try again. Easy for them to say, it's not them going through the heartache. So arrogant not to admit that nobody understands everything about RMC. The Coventry Profs are publishing lots of research, they are not some charlatan quacks selling snake oil! Our take on it at that point was that Coventry was a last ditch attempt, if they couldn't help us we'd give up (whether we actually would have I don't know)
Sounds like you could be there next week, so at least you don't need to wait long. Good luck!

I have a 12w scan tomorrow privately and then tuesday on the NHS. doing harmony testing privately so got extra scans... i am shitting myself!

and for information, I did the St Mary's tests but also all normal and nothing they can do bal bla bla, fortunately my following pregnancy was successful but that was probably luck... they scanned me at 6, 8 and 10 weeks and then was bye bye... never saw her though, saw Mr Rai...

Good luck tomorrow tiny big milestone coming up!

Good luck tiny! Are you doing the Harmony test at the FMC? It's a very swish place, you will be in excellent hands.

bootles That must have been so frustrating! Surely she must understand that you want to consider every possibility and leave no stone unturned?
But my consultant was also very dismissive of NK cell testing (he did use the term 'snake oil'...), it really does not seem to be generally accepted in the field, even though their research is solid (from what I can see). But had my mc also been chromosomally normal, I would have definitely gone to Coventry next. Don't be disheartened, do what you feel is right for you.

10DPO here, but I think I'm out for this cycle My temps are all over the place, and we only dtd once during my fertile window (which was really tricky to determine anyway this time). I think I need to ramp up our efforts a bit, it's been quite pathetic recently, I have definitely run out of steam... We have our wedding anniversary this Saturday, going out for a nice dinner (DH has arranged a sleepover for DS with friends). Just a shame the timing isn't better, perfect opportunity. Do I want to bring this all up during dinner conversation, though...?

yes. had the bloods and a 10w scan a couple of weeks ago and will get the results tomorrow. I know people who phone early for the results but i would rather be there in person to hear it...

Very swish with the coffee machine and water and real towels... not NHS...

Once is all it takes cloud... in fact this time on the actual O-day I told my DH where to go as he came home drunk from leaving drinks at work and I wasn't in the mood for his drunken fumblings
so must have been the time a day or two beforehand...

Hey folks. Thank you for your thoughts. I'm feeling more positive today. AF has arrived - precipitated by the proestrogen I assume as my cycles are usually much longer. Which has brought ovulation while able to TTC that bit closer - yay.

I have my appt with Prof Regan next week . I would definitely have gone down that route if St Mary's tests hadn't found anything though. How very irksome Bootles.

Hang in there Cloud. As Tiny says it only takes once.

Waves at everyone. Xx

Bootles they really don't know how it feels, do they? Luckily, my consultant was all in favour of me going to see Prof Q, he did a two year research post in Coventry, and thinks their approach is very interesting. He's also shrugged his shoulders a bit and fully admits that most of the time they don't have a clue what causes RM in some women! In hindsight, I think he's probably pretty good for a provincial consultant. Good luck with the Coventry appt when you make it. We seem to be having some success on their protocol...

Tiny hope it goes well tomorrow. Big milestone!

I'm just knackered. Three hrs driving and 5 hr meeting today. And DH can't make the scan next week so I've had to move it to the following Tuesday. I am getting quite a bit of movement, and it keeps me going.

Sorry, need to read back properly, I'm being a bit rubbish at posting at the moment...

Twilight that sounds really positive! Yay indeed!

baking thanks, and i agree with all you say. Yes it gave me the rage, the wobbles, and actually really upset me. She also referred to 'stories on those online chat forums and mumsnet and the like' about people having success after NK cell treatment, and said that actually the successful pregnancys were probably just random. Erm..that's you then! And ok, it could be random, but it could not be, and as you say the Coventry research is well respected - AND partially funded by the NHS, which does not have money to waste on snake oil and the like.

cloud, tiny, tanny', twilight* thanks for your thoughts. I will not be deterred from trying Coventry. I have to feel I have tried everything. They seem so focused on the testing aspects, but really not so much on the emotional side of things.

tanny hope the new job is going well, and great that you're feeling movements.

tiny thinking of you tomorrow, hope you sleep well tonight.

twilight hope you are told to go forth and ttc tomorrow. I really don't want to put Prof Regan in a bad light - maybe I did or said something to pee her off, and she did sort out the confusion over my clotting issues (or lack of issues as it turns out).

cloud how frustrating. You're not out this month yet, and next month you can really go for it. I hope you enjoy your anniversary, and maybe you'll know at the time whether to bring up the topic or not.

Its no good, I cant be concise - sorry for lengthy post again!

Morning Ladies. All this talk of consultants and their egos and rivalry got me in a writing mood and this is the result. This is for you, Bootles, and everyone else who feels they've every been fobbed off. I was not brave enough to name and shame, but it's clear who I'm taking about.
justonemoretimeagain.wordpress.com/2014/10/03/the-difficult-demographic/
Good luck today Tiny. xx