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Recurrent Miscarriage Support - tests, treatment, trying again - thread 9

(996 Posts)
bakingtins Sun 19-Jan-14 07:41:10

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

Can we start the thread with a recap of where we are all up to again, please?

squizita Sun 19-Jan-14 14:19:44

3 losses, 6 month break.

SoonToBeSix Sun 19-Jan-14 14:45:34

Hessy the main reason for leaving it one cycle is to accurately date a new pregnancy. If you want to try again straight away you can. thanks

bakingtins Sun 19-Jan-14 16:07:48

Hessy HB can normally be seen around the six week mark, possibly a few days before.

DownstairsMixUp Sun 19-Jan-14 16:12:11

squiz Still knicker checking then smile (me too!) FX for the scan on wednesday!

Hessy as baking said, some can be detected from just before 6 weeks but going by an average it is about 6. I was 6 weeks 6 days when I had my scan the other day and the heartbeat was a flicker on the screen. I didn't bother waiting for a cycle after erpc but didn't fall pregnant anyway till the 3rd cycle.

jbrd FX for poas on friday, hoping you get a bfp!

Feel ok today really. Boobs have finally let off hurting, about the same stage they stopped hurting with ds so not too worried about that. Feeling very, very tired and morning sickness?! should be called evening nausea. Last couple of nights after dinner i feel horribly sick and bloated. Hoping the little bean sticks, roll on 12 week scan (if hospital ever get back to me! grin)

katieash76 Sun 19-Jan-14 17:04:27

Hi again all, I posted in about nov time and was after a bit of advice if possible. First a recap,
3 mc all around 6wks in 2009
DS born 2010, no medical help getting pregnant, happened straight after 3rd mc
1 mc jan 2013 again 6 wks
19 wk loss June 2013, dd had Down's syndrome which we were fine with but excess fluid developed on lots of organs including heart and lungs and she didn't survive
Mmc nov 2013 at nearly 10 wks followed by erpc, was on progesterone.

Now it seems I've just had a chemical pregnancy, had bfp from 10-14dpo but now it is bfn. Was on progesterone again. My question really is tomorrow I have an appointment with consultant to see if anything showed up from product analysis following erpc in nov and I'm wondering what we should ask? Haven't had recurrent miscarriage testing or anything, just me and dh had blood tests when had late loss to see if the Down's syndrome came from us, it didn't. So does anyone have any advice as to whether I should ask to get referred somewhere like st Mary's (I live near bath). Or any other particular questions?

Sorry for a long post and thanks in advance for anyone who has any advice!

tannyLoo Sun 19-Jan-14 17:26:29

Katieash I live near Bath too and had an appt last week at RUH with gynae consultant about my RMC issues. I feel a bit fobbed off, and although they are all very nice, don't seem able to do much in the way of testing. If I was more assertive or patient I would have asked for a referral to St Marys.

They do have a really good new consultant who I saw about my suspected ectopic. She's called Miss Ficquet. I will ask to see her in future.

Hope that helps...

LateBloomer414 Sun 19-Jan-14 19:25:13

Thanks for the new thread, Baking.

I'm (just) 40, no DCs. Suspected MC in June 2012 (pg not confirmed). MC Sept 2012 at 6 wks, ERPC. MC May 2013 at 11 wks, baby measuring at 7 wks and heartbeat very very slow. ERPC in June. DH diagnosed with cancer a week later. Break from TTC from Aug to Dec but back on the proverbial horse now. Exploring IVF as when I started looking into it we weren't sure when DH's fertility would get the all clear. Hoping to conceive naturally rather than going the IVF route. Have been seen by St Mary's, MCs are unexplained.

Hessy Sun 19-Jan-14 19:56:16

Thanks for the advice everyone. Possibly with just one tube I have my excuse to get on with it and not wait.

Fingers crossed for you too Downstairs. Sorry we're all here...

TinyTear Mon 20-Jan-14 08:36:32

We have decided, if I don't get pregnant this month we will go to Professor Q next month and not waste any more time.

at least we will be able to say we tried it all...

squizita Mon 20-Jan-14 08:55:37

Tiny good luck with your plan! Hope all goes well whichever road fate takes you down this month!

Think I've worked out why I'm worried about this scan. Those of you who've been here a while: remember the scan-after-scan-what-is-wrong (I think I had 7 scans over 3 weeks)? Screen after screen of a weird misshapen sac and junior docs diagnosing ectopic etc' and scaring the hell out of me.
Before that, all scans I ever had have been to confirm MC after natural loss.
Once I had a week 5 scan confirming sac (but no HB etc' too early) was in the right place and that's the closest to a good scan I've even got: they booked me for an 8 week scan I never got to. sad
I just associate scans with seeing ...'free floating blood and tissue, no sac' sad. Or something terrifying. I'm scared my body can't produce an embryo, just an empty sac full of mutant pre-cancer cells like last time: because 2 losses happened before my 1st scan and the one that was scanned loads was T69/blighted Ovum (which do have something in them: just too small for a scan to ever see).

Logically this is ridiculous because my diagnosis explains the 2 5-6 week losses very neatly (clot ruined lining/placenta forming etc'), and the other loss was a random occurrence. But I'm still pooping my pants.

TinyTear Mon 20-Jan-14 09:07:32

squiz good luck

the thing with scans for me, it's odd, all the scans i had first at EPU and the RMC, the screens are facing the sonographers/doctors and not you, only if something is ok, they turn it towards you and it's fine

When I went for my first (and only as all losses were early) 12w scan I found it really really strange the screen was clearly facing me and I could just look and look and look...

For scans I always brace myself to the question "are you sure of your dates"

I am due on next weekend (not on my DD 2nd birthday party Pleeease) so by next week will know... have already bought ovulation kits as I will need to email professor Q on the day i ovulate to set up the appointment...

never been to Coventry before...

TinyTear Mon 20-Jan-14 09:08:02

latebloomer I am also (just) 40 - 1973 vintage

Ruggle Mon 20-Jan-14 09:33:52

Hi all

Recap from me:
39, no DCs of my own but have a very cheeky but adorable step daughter.
MMC at 11 weeks in July 2013 followed by mc at 5 weeks in November. Conceived straight after and am now 10+4. I haven't yet had a scan and am petrified that when I do it will show a blighted ovum. I have been throwing up between one and 5 times a day for the past 4 weeks...which everyone tells me is a good sign....but I am still not convinced anything's growing in there.
I have an appointment sceduled with a fertility consultant in Feb which I decided not to cancel, just in case things don't work out.
It's horrible not to be able to enjoy pregnancy and look forward to holding my baby. Instead I wake up each morninf wondering if I'm going to start bleeding and making sure I have a supply of pads in my bag.

FiremanSamsWife Mon 20-Jan-14 09:34:39

Hi all

Can I tentatively join? I hope its not cheating that I'm not going to actively ttc for a while though. Story as follows:

Early mc October 2010 followed by DS born in October 2011.

Since trying for number 2 we've had first mc in May 2013 (early scans due to constant spotting showed baby stopped developing at 6 weeks, medically managed miscarriage at 9 weeks), second mc in October 2013 (natural at only just 5 weeks ish) and I am now waiting for a scan on Thursday to confirm mc number 3 - scan 10 days ago showed a 5 week baby with a v slow hb when I should have been 8 weeks. I'm showing no signs of mc this time so if the scan is as suspected I will book myself in for an ERPC, both because I can't bear to wait (still feeling nauseous and have sore boobs which is just a cruel reminder) and also because I'd like the sac tested.

Apparently there's a 4 month wait to see our recurrent miscarriage clinic so my DH and I have agreed to take abreak until the summer so I can get some weight off, and get physically and mentally healthier.

Sorry that's so long! Crossing everything for you today Squizita, and sending Just some hugs, what a shitty year you've had. Huge congrats for the good scan too Baking - fantastic news! Hope all the pg ladies stay that way!

DownstairsMixUp Mon 20-Jan-14 10:20:20

TinyTear Do you have one of the big screens on the wall when you go for scans or just the one the ultrasound person uses? If it's the first one, I now ask for that to be turned off till they say it's OK as I know as soon as I see the screen something isn't right thanks to some brief placement I did in ultrasound as a student nurse. The 5 week scan on my last one it was just a very small round circle with nothing in it and I knew "blighted ovum" but I also tried to keep sane by reminding myself that sometimes you can't see as well at that early stage and read a lot on that misdiagnosed website. I think you just become an expert on seeing ultrasounds the more you go through! I have never been to coventry either, hope it goes all well for you.

squiz Really hoping your scan goes well. Honestly, I think it's normal to do what you are doing, you almost try and come up with explainations for "why" just to give yourself some answers. With that B/O I had I had light brown spotting throughout and told myself I should of known. I got told I had an ectropian and I always wonder if it was the cells from the failed baby that were sitting on my cervix causing the bleeding even though I am not a doctor etc so I have no idea. I just wanted any sort of answers. Fingers crossed for you. X

ruggle sorry to hear that but the sickness is always a good sign, I've heard sickness is a real good sign and studies have shown women who have sickness are less likely to miscarry! Could you not go for a private scan to ease your worries? Just google ultrasounds your area, there is quite a few near me. Expensive but worth it as the NHS weren't really very sympathetic towards me at all.

Welcome FiremanSamsWife and sorry to see you here. x

squizita Mon 20-Jan-14 10:20:36

Tiny How odd they would turn the screen. That would make my anxiety even worse! shock My hospital never did that thing with the screen: I could always see one screen and the doc the other. I've never had the 'are you sure of your dates' question something else to dread purely because, well, it's been pretty clear what's happened in the past.

Ruggle congrats! FX for you! Pads in your bag? LOL I wear a pantliner every day - otherwise I think I'm tempting fate! And I'm worried I just feel a bit sick in the mornings not upchucking left and right. Even though I know sickness varies wildly and some hardly get it at all!

Fireman Hi! Sorry to hear your story: hope you get your appointment soon and get some answers. Thanks for your fx... my scan isn't today, it's Weds - just been having absolute nightmares!

squizita Mon 20-Jan-14 10:24:13

Downstairs is that sickness thing a medical thing? Now so worried I don't feel sick enough. sad Although I know several people (including my mum) who never felt sick and carried to term.

TinyTear Mon 20-Jan-14 10:28:30

Squiz and downstairs

At my local EPU (Royal Free) there is only one screen - the one the technician uses...

At St Mary's they had one for the sonographer and one for me, but that was oddly places so i would have to turn my face to see it, so i could choose not to look if I wanted...

then the normal department has a screen just facing you so you see it all instantly...

tannyLoo Mon 20-Jan-14 10:31:36

Tiny my scan experience is the same as yours when I go to EPAC. I hate it. That question is a killer.

The only silver lining for me last time was that it confirmed blighted ovum rather than ectopic, and I then had a mid cycle one that was so nice, as it had no anxiety attached to it. Almost reminded me of the good old days!

DownstairsMixUp Mon 20-Jan-14 10:43:52

squiz there's a few studies on it but tbh, I never had sickness with my DS, i think I puked once the whole pregnancy (and i was 30 weeks!) and pretty sure that was just a dodgy dinner I had. Also, I only feel sicky in the evenings with this one, been sick just once and again, I do think that was the dinner I had! My boobs don't hurt anymore, I'm just tired! Try not to worry, there's studies on everything nowadays!

Tiny You should ask for them to turn off any forward screens or keep the us screen away till they know its ok, most of them would be kind enough to do that, I hate that knot feeling in my stomach I get waiting for scans, that and the desperate need for a wee is no fun!

Lancashire21 Mon 20-Jan-14 10:56:50

Hello everyone
I do find this a source of help and comfort - even when I am quiet on these threads. Having had a lot of early miscarriages (at 6/7 or so weeks) and no children, I have had every test going and have tried a bunch of things - aspirin, clomid - all sorts. At District General, then Liverpool Women's and most recently Coventry for biopsy with Jan Bosens (Prof Quenby's clinic). The test for NK cells was a last attempt to find a cause and results - normal. I was very upset as I badly wanted there to be 'something wrong' with me that might be fixable. I have phone consultation with them tomorrow to discuss. Not sure what they will recommend.
Very very best wishes to all - especially anyone having a rotten time just now. It's hard x

ac73 Mon 20-Jan-14 11:24:05

Hello to all. Just adding my story to the new link - copied and pasted from previous page so don't feel you have to trawl through it again! Hard to believe that this is my story and that I am still vaguely sane! This is very long and very sad, stick with me!

The last eight years have been a long and challenging journey for myself and my husband. I will aim to keep this brief and factual. I have no doubt that you will be able to appreciate the huge emotional impact running through it.
- May 2005 our first child was born. Induced at 38 weeks 5 days. I had obstetric cholestasis. All was fine although he was on the small side (just under 5 pounds). We stayed in hospital for 10 days trying to sort out his feeding and were then allowed home. All was good but our little boy was not putting on lots of weight, the health visitor was mildly concerned. At 12 weeks, the day after his immunisations, he seemed unwell -initially I put it down to the injections. He then went downhill - difficulties with breathing. We rushed him to a and e where he had a barrage of tests over the next 3 weeks. He was put into PICU but after a few days we were moved onto the general ward - we thought he was getting better. Another episode of breathlessness and we were back on PICU. After about 3 weeks we were left with two possible causes - tumour or a rare genetic disease (SMARD1). An MRI confirmed that it was not a tumour and SMARD1 was diagnosed. He died after 5 weeks in PICU. About two weeks after he died we received genetic confirmation that he had SMARD1. Each of our pregnancies has a 1 in 4 chance of being affected. SMARD can be tested for via CVS during the 12th week of pregnancy.

We decided that we wanted to have more children. Sadly since our son died this had been the pattern of our pregnancies.
-Miscarriage (about 6 weeks)
-Miscarriage about 10 weeks (detected at SMARD screening test - no heartbeat. There had previously been a heartbeat at the early dating scan)
-Termination - the baby made it to the test but had SMARD. We terminated the pregnancy as the baby would have died like our son.
-Miscarriage about 10 weeks (detected at screening test - no heartbeat. There had previously been a heartbeat at the early dating scan)
-Miscarriage about 9 weeks
-Miscarriage about 10 weeks
-PGD (basically IVF but with a screening test) - resulting in 3 SMARD free embryos, one was implanted. This resulted in a positive pregnancy test but then a miscarriage at about 9 weeks. It may have been a chemical pregnancy (no scans - my choice)
-1 embryo implanted into surrogate - negative test result
-Natural pregnancy which made it through the screening test and all was fine! We really thought this one would make it! Sadly at 20 week scan the baby was very small and it looked like it wasn't going to make it. Two weeks later it had died.
-Miscarriage at 9 weeks.

The miscarriages are not linked to SMARD and we have been told that the miscarriage at 22 weeks was not linked to our other recurrent miscarriage issues. No reason for any of the miscarriages have been found. We have had tests at our local hospital and privately by Professor Regan. More recently have had nk cells test by Shehata and Quenby which were high and both recommended steroid treatment. We also have one frozen embryo left. What to do? At the mo trying naturally but I am nearly forty one and time is not on our side. Just had 3 months of taking progesterone but no BFP.

Best wishes to all. Xxx

squizita Mon 20-Jan-14 11:29:20

Downstairs thanks! Very reassuring hearing your experiences with DS and now. I do feel sick in the mornings but it hasn't got past the odd 'dry heave' and some tea chucked up yesterday. The irony is that excessive sickness can be linked to molar so I'd be fretting either way. grin Just dry heaved - you can't wish an obnoxious dry heave in a smelly unisex work toilet no matter how much you want to, so guessing it's genuine.

Lancashire: how frustrating not to have the answer after all the tests. Prof Q sounds very comforting and sensible though, even if no NK result I'm sure they can put a care plan together for you.

bakingtins Mon 20-Jan-14 13:40:44

Squiz I have vomited exactly once in my 7 pregnancies, and it has been no different in the successful ones than the MC. it was a pretty good vomit though, up came my breakfast hot chocolate on a replacement bus service with no toilet
The only time I feel really sick is after scans, I think I have so much adrenaline coursing around that when it's all over I feel awful. It's very hard to enjoy them when you've had so many negative ones. I was panicking about the 20 week one even though I could feel the baby moving and had a very detailed scan at 13 weeks that was fine. I take a good book to distract me whilst waiting and ask the sonographer to tell me as soon as humanly possible that they can see a heartbeat, then I will lie patiently for as long as they want whilst they do their measurements.

Lancashire I'm sorry you didn't get the answer you were looking for. It's worth asking about the other treatments they are trialling (clexane and progesterone) because I was put on those as well as the steroids and the NK cells was the only thing wrong on the biopsy (they look at how your endometrium decidualises in the lab too, but mine was ok) Clexane is supposed to be cytoprotective for the placental cells, and progesterone promotes retention of a good uterine lining for implantation. The 'scratch' they do at the time of the biopsy is also supposed to improve lining and therefore outcomes for the next few cycles.

squizita Mon 20-Jan-14 13:54:10

Thanks Baking. Wow that sounds a barf and a half. I'll be careful what I wish for!! grin Thanks for the scan reassurance. smile Yeah I will explain to the sonographer (think they know my history anyway) that I'm nervous.

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