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 :)

Hello sasha and ourday, welcome to the thread and I am sorry to hear about what you have both been through. As the others have said, you are in a great place for help and support.

And thank you march, I will be holding on to the "genetic issues are rare" until that phone call!

Francine with my last pregnancy, I requested a scan from both midwife and GP, who both said no. But on ringing our EPU they told me to come in for a scan as soon as I could. I had had 2 previous m/c. It's worth a try.

size I know one of the others (was it march?) had success with phoning the secretary of the consultant to ask to be put on the cancellation list - that might be worth doing?

Aww, thanks Marchgirl and longest. I may try and call in an earlier test - but I might try and force myself to wait. It would be much more reassuring if it happened after 8 weeks - but it'll be more like 9.5 until I can get to one given Christmas hols. Decisions, decisions.

I am trying to distract myself with online Xmas shopping, but I seem to be incapable of making any decisions so not getting very far!

Thanks Flen. I am pondering calling the EPU units nearby too, just to see if they have a different policy.

Size, I jumped the queue and have an appointment to see the consultant at the clinic because I complained. Slightly different situation as I wasn't happy with the way they treated me first time 'round but worth a go. Do you have any other hospitals nearby either? I am within 30 mins drive of three and found that they each have v different waiting times.

Thanks flen, I'll give them a call and ask about the cancellation list. It's just such a long time to wait, especially as I've now had 2 birthdays since trying to start a family.

size I have been chasing and chasing appointments since my D&C at the end of Oct for exactly the same reason and am also scared of a longer wait. So I feel your worry!

Thanks our day. I think I am right in saying that Coventry, unlike the London clinics, diagnose nk cells through a uterine biopsy rather than a blood test so that might impress your consultant more. There is a lot of antipathy from consultants generally towards nk cell testing though. You will have to steel yourself against some consultant ego clashes if you decide to go downthat route.

size that is longer than I had to wait. My appointment was 4 weeks after the gp referral letter. Worth seeing if you can at least get some of the blood tests done in advance so you have something to discuss at your first appointment maybe?

How frustrating size. Definitely worth speaking to the consultants Secretary if you can get hold of them to get put on a cancellation list. With a waiting list that long there are bound to be lots of people who give up waiting and fall pregnant so have to cancel. I jumped up by a month, so definitely worth a try and if age is a factor for you then mention this too. My rmc didn't want me to get the bloods done by gp due to past errors in submitting them, but it's worth a try on that front as well.

Welcome sasha. I'm also struggling with the age gap thing although i always feel a bit silly mentioning it here, as i know it pales into insignificance compared to the problems some people here have even conceiving, but it does bother me as well, so you're not alone.

ourday the biopsy is done conscious. They do a scan first, then put in a speculum and a really thin flexible tube through the cervix to take a bit of lining. Not my favourite day out, but not too bad either, I found it less uncomfortable than a smear, I had mild cramping afterwards. Other people have said they found it unpleasant. The 'scratch' to your uterus is supposed to be beneficial in itself, it stimulates a healing response that improves outcomes for several cycles.
My consultant was unimpressed with NK testing too, but he was not offering me anything other than his already failed protocol (baby aspirin and progesterone) in the face of a 4th unexplained and genetically perfect miscarriage. I hope he's more open minded now having overseen my success on the Coventry protocol, to at least make women aware of their options.

Thanks for the advice everyone. (my maths is terrible, it's actually a THIRD of a year! - even more frustrated now). Ironically I am doing a design job for a Professor of Gynae and Reproductive Services based in my local hospital, if only it wasn't grossly unprofessional I would try and wangle a shortcut to treatment through him! You couldn't make this flipping journey up!

ourday please don't say things like "I'm the dud one", even to yourself. You need to be KIND to yourself at the moment, there are a few of us who have had 2/3 MCs this year and if I know anything it's that you need all the kindness (even from yourself) you can get. It's a huge toll on your body and your mind. Even if you can't block out the negativity try to consciously do things to be nice to yourself, whether a glass of wine, a bath, massage whatever. Also counselling can really really help.

Someone asked if you'd managed to have chromosome testing for any of the MCs but from your story I'm guessing not. It is possible, however, that you're hyperfertile... there's a theory it happens to some people, for one reason or another their wombs implant babies that have a genetic problem from the get-go where other people wouldn't even get to that stage...the womb would just say "no thanks" and that would be that! I think I'm probably one of them, no particular diagnosis as such but I've got preg pretty quickly each time and MC'd my first 2 times, currently pregnant for the third time. MC2 was an ERPC so I paid extra to have it tested and it came back with a trisomy. Trisomies are random so as Prof Regan at St Marys says in her book, she had a patient who had had 3 different ones and was panicking, but adviced the patient to keep trying and eventually was successful.

I'm clinging on to that theory for dear life as I'm in pregnancy no3. Scan at 5.5 showed the baby looking good with a HB so all good so far :/

Hi Francine it's so annoying you have to wait so long. They offer nothing before 12 weeks at my EPU unless there are mc signs. I am paying 75 each week at a fertility clinic, expensive but puts my mind at rest. If you wanted to be naughty you could fake a bleed or cramps at EPU but I know that is a bit naughty and can feel like tempting fate.

Welcome to the club ourday, sorry for the awful times you have had. Please know that everyone on here is lovely and no one will judge you for anything, just here for handholding. I think Barking covered all the NK cells stuff well. I would also suggest asking for a second opionion or seeing someone else privately. I have learnt to trust no one as the NHS has let me down so many times.

Regarding the emotional side, that is tough. I saw a counsellor, planted a rose bush and bought a special necklace that I wear everyday. None of them replace the babies I lost but it has helped me to be a little stronger and I felt like I have at least marked what was lost. Your SIL sounds like a piece of work, this journey gives you good people but there are bad ones out there too. At least you are wise to her.

Sash I am so sorry for your losses, especially the recent devastation of this one. Hugs to you. I have no DC so cannot fully understand but I always say to others on here not to worry about age gaps. My brother is 8 years older than me and we are best friends and so close, I don't of any sibblings closer actually.

The NHS will normally only investigate after 3 mcs but I pushed for mine after 2 mcs and they obliged. This was helped along by 5 years of infertility but I always say if you don't ask you don't get. You could look into going private or at Coventry but I know it's not always easy to balance the books.

Size I would say talk to the professor and get all the things you can. The NHS is stretched and it's often a case of 'she who shouts loudest'. You pay your taxes and deserve the help. Go for it!!

Sorry to anyone I've missed. All moving so quick!

xxx

Welcome ourday and sash, sorry for your losses. You've come to the right place for info and support. I think most of the relevant stuff has been covered by others. I'm a Coventry girl, too. Still slightly too nervous to declare myself a success, but I'm 10.4 weeks on progesterone and heparin injections. I had the scratch and nk cells were normal, so no pred, but got the other meds anyway and they seem to have got me past my 6.5 week danger point. Just hoping no genetic issues (#3 was Turner's syndrome), but if that's ok, fx it will work out.

Quick question for the others on heparin, does it matter particularly whether you take it at the same time every day? Dh is away tomorrow night and I'm still too much of a wuss to inject myself but he probably won't be home until Saturday afternoon. I normally take it first thing in the morning. Do you think it will make a difference if I take it later? Thanks.

Francine, uclh at Euston has a walk in and wait EPU, if you can't wait until January, maybe they'll see you, given your history?

Thanks for the support guys, pills Dr gave me seem to be working, I have managed ice lollies today. Thread very busy, hello to newbies, so sorry for your losses, will have a read through when I feel a bit better.

Hugs tanny
to everyone

That's good purple
Hope you continue to improve.

£75 per scan is not too bad actually cat. I might be tempted by a 16 week one if I can find one for that price. Think they are well over £100 round here though.

That's good news purple. Glad they have managed to find you something that works for you so that you can keep something down. do you mind me asking what they prescribed? Just planning ahead for next time in case i have it again, even though I know it's different for everyone.

Started with prochloperazine but stopped working now on cyclizine, really hoping it works. Fx you don't get it next time.

Woah super fast thread today!

Sasha I recently had my 2nd mc and Ds is 21 months. We originally hoped for a close age gap, but as time passes we are just more and more grateful for what we have and as cat proves with her big bro, the gap really doesn't matter in the scheme of things.

I'm trying to man up to contact my gp to see if I can convince her to do any tests despite it only being mc 2. Just can't bear the thought that I might be losing healthy babies. AF is over so we're all set to get on with TTC again. Wish I felt happier about it. Feeling rubbish... watching 17 kids and counting is definitely not helping.

ourday You've had loads of good advice already, but just on the 'anything extra' question - I was on progesterone for my last pregnancy and since having thrombophilia diagnosed at the rmc I'll be taking heparin if there's a next time (fingers crossed) but no aspirin. Depsite my clotting issues two consultants both said the potential harm outweighed the potential benefit.

sasha I managed to fight for referral to the rmc after two mc but only because I've got unexplained infertility and neither of my pregnancies were naturally conceived. I didn't want to waste our remaining IUI/IVF cycles if there was a reason I might mc again.

Rebecca Adlington? Didn't know about that one. That annoys me even more, along with Jessica Ennis, and historically Paula Radcliffe - all very fit women who got pg, and I keep getting told that maybe I should cut down on the exercise as it might be the reason I'm not getting pg - I'm not exactly an olympic athlete, I just do a bit more exercise than your average couch potato!

I also attended a wedding last year while mc-ing, and the bride gave birth last week. Bitch. Why is it so easy for some people, and so hard for others?

Gosh. Speedy thread, I have read and absorbed all, but am bound to miss people out so apologies.

flen yes to ovulation emotion. It is since DS/MC's/getting older, for me. Agree genetic issues are rare, so sorry you are having to wait, hope you get results tomorrow.

Tanny you are doing so well, and have been through such a lot to get this far so I'm not surprised it is having an effect on you. When pg with DS I had hideous awful upsetting dreams - also included me doing dreadful things. They are just dreams. Maybe hide away for a couple of days if you can, then ease gourself back i to things? Do whatever you need to give yourself a break, sending lots of hugs your way.

Francine both a gp and epu nurse told me I knew what to say to get a scan. I needed one to confirm untrauterine pg and start clexane, as per coventry. Also true that waiting is definitive. I am in a 2 WK wait between that scan and next, and no HB seen yet (was 5+1 at scan by my ovulation). Its tough, but I opted for that rather than a 'maybe' scan. But there are ways to get in earlier if that's what will work for you...

ourday this thread is full of lovely women, we are here to support each other. It sounds like you were in a very difficult situation aged 17, there is no judgement from me, that's for sure. And karma? Karma Shmarma. I think all the practical stuff has been said. I had 4 losses before going to Coventry, and was found to have high (just about) NK cells. The biopsy was a bit uncomfortable, but doesn't last long, and was definitely bearable. I got pg the next cycle, bfp day after results, but have to wait until 9th to find out if its progressing. Good luck.

Sasha Your age gap obsession is familiar on here. It took me a long time, but I now accept we can't control these things. Having had a child is actually a really good sign as it means you have done it once..and we have a DC to love and focus on. Please don't get me wrong, It doesn't make the pain of each loss any less, and I know, and do understand how hard it is. Use us for support, and know that you are not alone.

purple hope those drugs keep working...

just so are we talking about 6 hours delay or something with the clexane? Hmm I'm not sure. I don't imagine it would make too much difference but don't quote me on that. Can you just really try and go for it? Not easy I know, its not a part of the day I enjoy...

I am feeling nauseous a fair bit but still feel the pred makes everything feel different. I just have no clue what's going on. Find out on Tuesday. I have actually gone a bit Zen and accepting of whatever will be will be, even if it means I will not end up having another child. Having said that, I still don't know how I will cope if that is the outcome.

Also ourday, I also had the experience of my NHS consultant being very dismissive of the NK cell theory, and then actually quite rude to me. But she couldnt offer me anything else. I felt I had to try everything, and that Coventry is NHS self-funded, and as someone said, not for profit - lots of research going on. It remains to be seen whether I will have any success with their protocol, but at least I will have tried. Plus I wanted to get the 'other side's' perspective.

Wow, this thread was super busy yesterday!

Welcome to the newbies & sorry for your losses. I have had two MCs this year after a successful first pregnancy (dh almost 4) although the EPU clinic wasn't supportive my GP was and he has now referred me and waiting for my appointment in the new year. Maybe worth a try.

Don't get me started about Catherine Middleton.the day her pregnancy was announced was the day the second MC was confirmed?? constant reminder.

This week I have been struggling with photos of newborn babies and a blow by blow account from a colleague of being a birthing partner. Neither were the parents of the children, which I mentally prepare for. Double ????

I wrote this after the thread yesterday: thingsaboutmiscarriage.wordpress.com/2014/12/05/things-about-miscarriage-no-16-triggers/

Hugs to all.

The speed of this thread at the moment is ridiculous! hopefully that means you are all making lots of progress.

flen thinking of you today. Tough news either way but hope it moves you forward.

sash don't worry about age gaps. They work out whatever you end up with. I've had lots of people congratulating me on the spacing of mine recently (3.5 yrs with one MC in between, then 4 years with 3mc) little knowing it's nothing like we planned. However it turns out will seem just right for your family in the long run, and there are advantages and disadvantages to both big and small gaps. I wonder now how on earth I'd have coped if I had a toddler, a 4 yr old and a baby, instead of two big boys I can pack off to school but I'm sure if that had worked out we'd have been fine.