Recurrent miscarriage support - tests, treatment, trying again - thread 8

[Bakingtins]

Welcome everyone, pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of company, information, moral support, tea or sympathy.

Can I suggest we start page 1 with a recap of where we are all up to, because my fuddled head can't keep track?

I know I'm not very good at keeping in touch on here bit I need your help. I had my follow up at St Mary s yesterday and I'm a complete mess.

All the results came back clear, and the only 'plan' is for me to lose some weight and for oh to stop wearing lycra when he trains. The appointment felt like a jumbled mess with half explained trains of thought/explanations which were never followed through, but I wasn't in the right frame of mind to ask any questions or for clarification. We had to see the research midwife afterwards so I completely disintegrated all over her.

I know deep down that I should feel relieved that I don't have any thing which they tested for but as I said to her "how the f* do I find the strength to try again".

I also feel that I've wasted the appointment by not asking for clarification, questions - I didn't ask about nk cells, or why the consultant started talking about lupus and then veered of into talking about how I didn't want a baby, I wanted live healthy baby who wouldn't impact on my dad (he wasnt to know i have bad sibling anxiety anyway, and already feel guilty for the.amount of time I've missed being with her through the mcs).

Sorry, thoughts are still jumbled

Daisy Sorry you had an upsetting time, it's horrible when you leave and remember all your questions afterwards (I always do). If you have questions, email them to Yash at the clinic with your hospital number: she does pass these on and emails back consultant replies. Also they'll send you/your GP a letter with all the facts set out but that takes a couple of weeks.

Their structure for giving test results, from my appointment, seems to be to go step by step through every test they took then saying yes/no. So if Lupus was mentioned it might be just that they tested for it? In my case they spoke about Lupus, genetics, uterus shape etc' etc'... but then I didn't have any of those things. It's scary hearing all the things listed out.

I know it sounds terrifying (I was so scared they'd say nothing wrong) but finding nothing is a good thing in terms of prognosis.

Desperately :( Google your local EPU and phone/tell them: I've had junior docs do this before and it's not on. I only realised during my 3rd when the gynie on call came and told one off for telling me I couldn't just "come in and demand a scan". Officially, it's because of ectopics ... ALL pregnant women with brown blood need to be checked ASAP by scan or bloods (brown blood does also happen in pregnancy for some reason so doesn't mean always a loss, keeping fx for you).

I woke up at 5.30am feeling sick as a dog. Can't be sick though. Guess it's a good sign but I have been getting twinges - not quite pains if you get what I mean - fx it's my muscles adjusting.
I also have a sore throat and stuffy nose. Got scared I have the start of some kind of serious illness that can cause MC. Blatantly I have a head cold.

Welcome to the new ladies sorry you are here and what such sad stories :( you have had some good advice here I won't add anything as I'll be repeating what others have said, this is a great thread for the support too it has been a godsend for me.

squiz I had the same a few weeks back stuffy nose and sore throat even now I have lots more nose and chest mucus sorry tmi but I think it's normal..yak! Sickness is a good sign although not nice, I panicked when mine went away at the weekend even though it does normally go away in the 2nd trimester anyway but its back again still vomiting 2-3 times a day!

I've been to see the consultant this morning and she kindly scanned me I think she thought I'd have a breakdown if she didn't I've been so anxious and had convinced myself it had all gone wrong I cried when she said ooh its kicking, I said what there's a heartbeat? It was lovely :) I'm going to be getting lots of extra scans too so that's good.

butterfly that's brilliant news. How far along are you now?

desperately I'm sorry you are stuck in this limbo, I've been there and it's soul destroying, but you do need to leave it at least a week between scans to give them the hope of seeing significant development. Have you tried phoning EPU and seeing if they'll bring the next scan forward? Would it be a week interval tomorrow?

daisy I'm sorry you didn't get the clarity you wanted from your appointment. It's often stated on here that you have the best chance of future success if you are in the "no reason found" group, but I think it's psychologically a lot easier to cope if you have a diagnosis, a reason for your past losses and a treatment plan, even if that treatment plan is only improving your chances and no guarantee.
As a vet I like to be able to make a concrete diagnosis and give clear treatment instructions, but unfortunately medicine is not always like that. I suspect the doctors also flounder a bit when you are looking to them for solutions and they haven't really got anything to offer. I don't know what else the comments about a healthy baby were about - surely that's what we all want, preferably to fastforward about a year and know that we get a healthy take-home baby to join our family with no additional emotional trauma along the way?
Take a bit of time to assimilate what was said and formulate a list of questions to email or phone back to them, I'm sure that appointment does not represent your one chance to have questions answered.
You also are under no obligation to TTC until you are ready (or at all). It's easy for them to say "go forth and multiply" when it's you that goes through the stress of it all. Having a break can be very therapeutic. I had the summer off TTC whilst I had the NK testing done, did C25K to get a bit fitter, and tried to think about other things. It helped me return to it in a better frame of mind.

Thank you all for your kind replies. I think Baking's hit the nail on the head - medically it's better in the no diagnosis group but emotionally it doesn't (at the moment) necessarily feel better.

I'm glad they may be able to answer questions on email - nk testing is one of those questions. .

Baking I'm 15 weeks 4 days now :)

Daisy I didn't get as far as you with regards to testing I had clotting tests etc done but just at my local hospital, I felt very strange when the results came back normal because I wanted something to blame my miscarriages on. Like baking said it's the best group to be in but it's hard, you want them to say we will prescribe you this and it won't happen again but instead you are just told to try again. Hope you can get some more questions answered via email.

Great news Butterfly! :)

Daisy I felt exactly the same when I was told that there was no obvious reason for my mcs. The most recent one had trisomy 2, but that's a spontaneous mutation, nothing to do with me or DH, our chromosomes are good.
I was relieved, yes, but part of me did (and maybe still does) hope they would find something that can then be easily treated... I know this is silly, and agree with Baking that the 'no reasons found' group is probably the best one to be in. Statistics should be on our side! But I can't help wanting a guarantee that, if/when I'm pg next time, it'll all be OK. Unfortunately, no one will ever be able to give me that.

I have a question about NK cells - have been doing some reading (i.e. googling), and most sources said that they can only test for NK cell levels in your blood, but that it's the uterine NK cells that are the ones that matter as regards to how a pregnancy progresses. What do the clinics that look at NK cells test? Is there a correlation between blood and uterine NK cell levels after all?

prof Q looks at uterine NK cells via a biopsy. A thin tube is passed through your cervix + takes a piece of womb lining, combined with a 'uterine scratch' which is supposed to stimulate a healing response and a better lining for the next few cycles. It sounds awful, I found it no worse than a smear test.
AFAIK everyone else looks (Drs Gorgy and Shehata in London) at NK cells in blood and there is a lot of argument about how relevant to pregnancy that is. It was one of the reasons my local doctors gave me for not testing it.

I have a question for the NK cells ladies, was there a pattern to your miscarriages?

As I am also in the 'all normal' group but the fact is I have had 4 miscarriages...

I'm also "normal" as blood levels were all good. My consultant thinks I'm "super fertile" and described any subsequent pg as having a 40-50% mc chance.

I don't know what to do but keep going, so after SMEPing the last few days we're back in the 2ww.

I guess at least the super fertile thing gives me some rationale, but I can't help feeling a bit of those of you seeing a specialist who doesn't ask why you're there with exasperation!

Tanny I can't believe they ask you that! I asked about super-fertility at St Mary's - I do tend to get pregnant within 2 months of starting trying - but they said at the moment it was still being studied in (Denmark I think). They said there wasn't enough confirmed information to start thinking about % chances: might be something worth reading up further about this for reassurance? As they then found out my APS I didn't ask further about it.

No news here bar that I clutzed up my injection this morning so will be very bruisy, my local chemist is RUBBISH at sourcing clexane meaning I have to go pick up 1 box at a time grrr. Boobs still sore. Some sicky feelings, not as bad as yesterday so and I blew my nose and got a minor nosebleed. Maybe due to clexane but I get blood clots in my nose with the sticky blood so it scared me. Plus I have a gripy tummy and keep thinking oh my god that's cramping... mmm yes, but more constipation and wind cramps logically... (tmi)

I used to be super fertile, before my DD got pregnant in a month or two...

Now after her birth took me 9 months of trying, so I was half hoping my body would have learnt what a 'good egg' was, but then had another MC...

Mine were all at 8-10 weeks, often after a heartbeat was seen. When I was being scanned more regularly it was obvious it was going wrong from early on as embryo was behind dates, late to develop a HB etc, and would have developed further but not enough for the time elapsed by the next scan.
Other ladies on the "pred thread" seem to lose them much earlier, at 6-7 weeks, but I also know of a few cases where it has caused late losses. Basically the embryo doesn't implant properly and the placenta can't form an efficient connection so at some point the nutrition to the embryo fails.
tanny my consultant thought I might be "super-fertile" as I have always got pregnant quite quickly, but proved wrong when it was shown that the embryos I was losing were normal. AFAIK the theory with "superfertility" is that your body is allowing abnormal embryos to implant, that would normally be rejected. Do you know that any of the lost embryos had chromosome defects or alternatively were healthy? Your specialist sounds like he has all the compassion of a half-brick, BTW!

Jan Brosens recent paper on the subject of super-fertility
Abnormal decidualisation of the uterine biopsy samples is one of the things they look for in the implantation clinic.

I have been diagnosed with high nk cells. Most of my miscarriages were around 9-10 weeks.

desperatly So sorry you are stuck in limbo. I remember the wait after my first scan to confirm it was a blighted ovum, it seemed like a life time. Sending lots of your way. The only thing I can suggest is keeping yourself busy to make the time go by quicker but I know it's always on the back of your mind.

squiz Probably just a cold. I was pregnant around this time with my first DS (he was due 29th of august 2009) and i was forever catching colds. I seemed to catch things really easy in early pregnancy. I swear I spent them first few months with a runny nose/sore throat.

butterfly so pleased everything is going well for you still. That must of been beautiful to see the baby kicking!

bakingtins have yours always been missed miscarriages then? They counted my blighted ovum as a miscarriage to but there was never a baby there ever. I still don't know how to view that m/c. It was a very strange time.

Well I got fed up of waiting for the referral. I am constantly on edge, nervous, worrying and I've paid out £65 for piece of mind as I have a private scan on Saturday. I am absolutely terrified. I don't have lots of symptoms and am worried it's another blighted ovum or there will be no heartbeat. But I can't go on not knowing what's going on. Worst still a woman at work has announced her pregnancy (she's only 8 weeks!) she is in her 40's though with 3 other children so I suppose she has confidence in her body whereas I don't, Absolutely shitting it!

No I wouldn't class them as MMC because I have always MC naturally within a few days of the baby dying.
1st one had bleeding from 6 weeks, several scans showed baby with HB, MC at 10 weeks.
2nd one, few days of spotting, didn't get a scan, MC 8 weeks.
3rd one early scan showed baby with HB, MC 9 weeks.
4th one had lots of scans over several weeks - no HB and measuring small at 7 weeks, then developed a HB but further behind my dates on 2 subsequent scans, finally MC at 9.5 weeks.

Best of luck for Saturday!

Ah right, yes, I would say they were normal miscarriages to, I keep hearing my last one, the bo, referred to as missed as the sac kept growing and it was showing no signs of going on it's own. I think my fear is going and seeing that empty sac again, the first, I just passed on my own, like a clear, gloopy thing, which I stupidly panicked and flushed away. There was nothing just clear stuff that first one, I always wondered if I had two B/o's in a row. Thanks bakingtins I have two days at work before saturday, bet it will drag!

Baking, interesting article what I could understand of it, thanks!

Mine have all been around the 6 week mark, but no genetic testing on any of them.

1st was natural mc at 5+5 and I passed the embryo, but didn't keep it (just put it down to "one of those things")

2nd was mmc at 11+4 but embryo measured 6wks with no HB when scanned. Again natural mc, but with haemorrhage and panic. The embryo was lost in all of that.

3rd was natural mc at 6+2, but hardly any bleeding and no embryo seen. Of course it happened at the weekend, so couldn't go to EPAC. I think it was a blighted ovum, as I got a BFN as well only 4 days post mc.

4th was suspected ectopic, which eventually was diagnosed through scans as a blighted ovum and I mc'd naturally at 6+3, again with little bleeding, no sac, and BFN a week later.

I conceive whenever I want (and when I don't!), so I know I am very fertile, so that makes sense, but I don't know why I'm having so many duffers in that case.

I was already starting SMEP when I saw my sensitive and thorough consultant, and he kind of mentioned waiting for a while b4 ttc, but in the next breath said not to not try... Just to fuck with my head some.

So, next question... If my body will hang onto any old duffer, should I be encouraging this with starting with progesterone?

I don't think my consultant will appreciate me asking him!

Thanks. I was just wondering as mine were all different and that was the only think I haven't been tested for...

1st - at 10w start bleeding, didn't seem it developed more than 6 weeks
2nd - a bit confusing straight after the first at 6w not going anywhere - ERPC
3rd - heavy bleeding at 8w - natural

and then the 4th, at 8w measuring 5w but by the time i had the ERPC at 9.5w hadn't even started bleeding...

still humming and ahing if I should invest in checking the NK cells

Downstairs on the subject of blighted ovums and what they count as, mine was definitely a MC and a blighted ovum MMC because although too tiny to see anything on a scan they were able to do pathology on it after the ERPC. So there must have been something, albeit tiny and never grew, in there? I don't know if that's the normal situation.

With my naturally passing losses the sac was always ripped up before it came out. I remember seeing a tiny 'blob' when I passed a bit of sac on one ... only 5+5 so would have been tiny, always wondered if it was the embryo.

I'm also terrified of going in for my scan next week, thinking it's OK and being told it's an empty sac again or even worse return of the partial mole urgh. :/ Repeats mantra of 70-75% success rate per pg on my medication with my condition... relapse for PM less than 1% ...

What day is your scan squiz? I am terrified to. My latest thoughts are heart has stopped/molar pregnancy. I've no idea why I keep reading it.

Oh goodness sorry Downstairs for saying the M word!! It's, like, 1/1000+ rare!! I'm paranoid ignore me.
My scan is on the 22nd (well, my St Mary's appointment at which I shall ask for a scan if they don't offer - it's at 8.45 and clinic starts at 9am so hoping the 15 min is for fanny cam time).

downstairs I'm glad you have a scan booked though rubbish that you have to pay. My promised epc reasurrance scans have turned out to be one and to call back if I have any problems! Does going out of my mind with worry count as a problem? 2 weeks to my next appointment and its such a long time.