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Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

(763 Posts)
forestnest Fri 04-Sep-15 12:30:13

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

BumbleBee0 Fri 04-Sep-15 12:48:07

Thanks for the new thread forest!

missie so sorry to hear of your losses and your latest loss sounds particularly hard given a good 12wk scan. flowers
I hope the erpc goes ok today and afterwards you feel ok physically. Please continue posting here, it really is a wonderful place to be during such a shit, dark time. You definitely won't be feeling lonely with us. smile

flower go go eggs for today!! Hope it isn't too painful afterwards and you can rest up.

gakay I'm not sure if you can get a referral to Coventry, most of us on here have gone without one. It's £360 fixed price which includes a discussion with a professor, scan, biopsy, phone consultation with a prof to discuss results and a treatment plan (which you then give to GP/consultant who hopefully will prescribe the drugs!). The results take about 4wks.

Talking of Coventry I was hoping bootles would be lurking as I sent an update email to them last night and prof B replied first thing this morning! grin

If anyone would like to join the fb group you can pm me with your email or fb name and pic description and I'll add you.

Allmychildrenhavepaws Fri 04-Sep-15 13:11:37

missy thinking of you today hun...you'll be home soon flowers x

Allmychildrenhavepaws Fri 04-Sep-15 13:12:42

Thanks for the new thread forest x

Marchgirl Fri 04-Sep-15 14:33:54

Link to the RMC investigations information
Link to the stats sheet is here

STATS UPDATE

allmychildrenhavepaws: 27.TTC#1, 2MC, pg
allthereis: 29. DC, 4MC, pg
amanda89x: 25. TTC#1, 3MC
anniehoo: 42. TTC#1 for 2.5yrs, 4MC
barkingtreefrog: 36. TTC#1 since '11, 2MC
bootles: 41. DS, 1TFMR, 4MC, pg
brummiegirl15: 38. TTC#1 since '14, 3MC, pg
brummiemum87:DS, 4MC, pg
bubblybubbles80: 34. TTC#1, 3MC
bumblebee0: 29. DS, 2MC, pg
bunnymad: 40. DD, 2MC
bythesea82: 33. TTC#1 since '12, 3MC, pg
casiopeia: . TTC#1, 3MC
chrystley: 41. DD, 5MC, pg
clairemorgan81: 33. DS, 3MC
cloudjumper: 43. DS, 4MC, pg
confu3ed: 39. DS, DD, 5MC, pg
desperatelyhopeful: . DS, 10 MC
emerald72: 43. DS, 3MC
enlightenedbunny: 34. TTC#1 since '10, 1TFMR, 3MC, pg
erica21: 32. DS, 2MC, pg
extrablessings: 33. DS, 6MC
fackinell: 44. TTC#1, 4MC
fififolle: 37. DC, 2MC, pg
flen: 36. TTC#1, 3MC, pg
floweroct: 34. TTC#1 since '11, 3MC
forestnest: 34. TTC#1 since '14, 3MC
frecklefire: 40. DS, 3MC
gemima78: 37. DD, 4MC, pg
genwah85: 29. DS, 3MC, pg
girliesaints: 37. DD, 4MC (1 twins)
girlinoz: 32. TTC#1, 3 MC
hels268: 35. TTC#1, 5MC
homeboddy49: 35. TTC#1, 3MC
Ifinishedthebiscuits: 37. 2DS, 4MC
iloveyoubaby: . DD, 2MC
inamaymaybewrong. 37. DS, 2MC
jady77: 37. TTC#1 since '14, 2MC, pg
kazz2112: 31. TTC#1 since '14, 4MC
lauren83: 31. TTC #1 for 7yrs, 2MC (1 twins)
leah1984: TTC#1, 2MC
lilmissiehopeful: 36. DD, 4MC
loopyaboutmy2boys: 38. 2DS, 6MC
losttherythm: 42. TTC#1, 5MC
lovemylittlebear: 29. 1 ectopic, 2MC, pg
marchgirl: 38. DD, 5MC, pg
maverick79: 35. TTC#1, 2MC, pg
me2me2: 2DC, 2MC
mimidoddrioni: 35. TTC#1, 2MC
minnie74: 40. DS, 4MC
monten: 37. TTC#1 since '13, 1TFMR, 2MC
morganlefey: 29. DD, 3MC
mrsb0710: 29. TTC#1, 2MC
mrsconfusion: 36. DD, 3MC, pg
mrsdiddlydoo: 34. DS, 2MC, pg
notspartacus: 40. 2DD, 2 ectopic, 3MC
onedaymaybe1: 32. TTC#1, 3MC, pg
onestep2015: 39. TTC#1 since '13, 3MC, 1 ectopic/PUL
patienceisvirtuous: 37. TTC#1 since '14, 3MC
peqpit: 33. TTC#1 since '13, 3MC
portmoon: 43. DS, DD, 5MC
primarynoodle: 22. TTC#1, 1TFMR
rubberduck2: . DD, 2MC
sallywade: 36. DS, 1TFMR, 5MC, pg
sashakerr: 37. DS, 3MC
sebsmummy1: 40. DS, 3MC, pg
sizethree: 35, TTC#1, 3MC, pg
snoopysimaginaryfriend: 29. TTC#1 since '14, 3MC
spamminit: 25. 2DS, 2MC
strubidooo: 34. TTC#1 since '12, 3MC, 1 ectopic
sunandrainbow: 38, TTC#1, 4MC, pg
teach3: 27. TTC#1, 3MC
texta: 32. TTC#1, 3MC
thepopandcry: 38, DS, 4MC
thornfield38: 34. TTC#1 since '13, 2MC, pg
tomcat81: 34. TTC#1 since '14, 2MC
twilightstruggle: TTC#1 since '12, 5MC, pg
vicki272: 29, TTC#1, 3MC, pg
wadsy: 36. DS, 1 ectopic , 4 MC, pg
yompingjo: 40. DD, 3MC

Thread babies
bakingtins: 40. 2DS, 4MC. Faith born May 14
tannyloo: 42, 2DS, 5MC. Bertie born Mar 15
tinytear: 41. DD, 5MC. Alice born Mar 15
justonemoretime: 39. 3MC. Scott born May 15
purplefrogshoes: 38. 2MC, 1CMP. John born May 15
longestlurkerever: 34. DD, 3MC. Beth born Jun 15
catlover2014: 35. TTC#1 since '09, 3MC. Louis born Jun 15
boozle80: 34. 3MC. Mhairi born Jun 15
belleende: 40. 3MC, 1 TFMR. Cissy born Jun 15

here are pictures of our lovely thread babies

Awaiting birth update
bettybutterchops: 40. DS, 3MC, pg

Marchgirl Fri 04-Sep-15 14:35:18

gakay, apologies. Just realised I've missed you off. I'll add you next thread but my battery is critically low atm!

Frecklefire Fri 04-Sep-15 14:53:48

Thanks for the new thread forest!

Me-40
Dh-49
Ds-25months
Mc#1-June 14 - 6 weeks. Natural.
Mc#2-Oct 14 - 7 weeks. Natural.
Mc#3-Feb 15 - 11 weeks. Mmc.
All nhs bloods done - nothing found.
Prescribed progesterone from 7 days post ov.

BumbleBee0 Fri 04-Sep-15 16:07:55

Whoops I forgot my stats!

Me 29 (not for much longer!)
DH 32
DS 2
Mc1 sep14 - MMC discovered just under 12wks, measured 8+5. Has medical mgmt.
Mc2 jan15 - also like MMC, discovered 6-7wks but only measured 4.5wks (empty sac), took another 2 wks to miscarry naturally.

Positive for factor v Leiden and elevated uNK cells (tested at Coventry).

Now 15wks pg on Coventry protocol although meds now ceased apart from daily aspirin.

hels268 Fri 04-Sep-15 16:36:21

forest thank you for the new thread..at some stage I may figure out how to do it!!

Welcomeminny so sorry to hear what has happened. It will be over by now but I wanted to share I have just had an ERPC a couple of days ago and I managed without the codeine which actually made it easier to recover from - physically at least - last time around I had codeine and it knocked me for six. I was terrified the first time too, but it was okay, and the staff really have looked after me well both times.

I really feel for you having had good scans until the 12 week point, it must be incredibly difficult, so give yourself lots of space and time.

Thinking of you, its so hard in these first days afterwards, but you will find support here flowers. Also if you can trust in your friends and family - don't keep it to yourself. I've shared more with my friends this time and they have really come good, bless them.

Another thing - which may be isn't for right now while you digest everything - but a few of us on here have talked about counselling - bereavement type counselling in particular - and while this might feel bit airy fairy for some, it can be so helpful. I resisted it for a long time thinking it wasn't for me, but it can really be a load off your shoulders even with just one or two sessions.

Ours was just 7 weeks 5 days and from the 5 mc, was the first sign of a baby actually in there! We hope that was a positive sign, and just really horrible shit luck that a haematoma seems to have been the cause this time around.

Thank you ladies all for the kind words over the last few days. It really has helped.

I'm taking your advice and being good to myself - I am taking a little break from work which I haven't with any of the previous mc.

Freckle - we went on a self imposed break from TTC and while it felt counter-intuitive at first, we eventually found it very helpful. That was after mc number 4. We concentrated on keeping healthy, taking the right supplements, and generally taking the pressure off ourselves. We also found it refreshing that sex wasn't about procreating, which as you all probably know, can often kill the magic! wink

The break lasted longer than we originally intended as we had the nk cell uterine biopsy but had to wait 3 months for a proper 'peak' fertility sign on the Clearblue ovulation test - that was bloody frustrating. But overall I think the break did us good, and left us in a better frame of mind for dealing with this latest situation. You do need to build yourself up again, or at least I've found that a lesson for me.

xx

hels268 Fri 04-Sep-15 17:08:13

Oh and I wanted to ask - any of you ladies on the Coventry protocol, would any of you know what their view is on use of blood thinners - be it aspirin or heparin, and any increased risk of haematoma in the uterus (given our recent experience)?

I'm thinking of making them our next port of call, but wondered if this question has come up for any of you?

Floweroct2 Fri 04-Sep-15 17:12:16

My stats, ttc#1 since 2011
Mc dec 12 mmc at 12 weeks measured 5 weeks
Mc mar14 following iui at 5 weeks
Mc nov 14 9 weeks following good 7 week scan
All bloods normal, been to Coventry all normal

Currently doing ivf. Ec today 9 eggs waiting for call tmrw to find out about fertilisation. Taking cyclogest from tonight, clexane from tmrw.

Anyone got any tips for clexane injections I hear they're not nice!
Sorry for recent losses, this is a really good thread although slightly quieter than it used to be!

mrsdiddlydoo Fri 04-Sep-15 17:55:04

Thanks for the new thread forest

Me 34, dh 33, DS 2
Mc1 April 13 @10wks, mc2 Nov 13 @12wks, currently 25 wks pregnant after visiting Coventry and following their protocol for normal uNK cells.

15wks bumble where does time go? That's awesome!

BumbleBee0 Fri 04-Sep-15 18:13:33

hels I'm not sure what coventrys view is re. Blood thinners increasing risk of haematomas. I know they're not keen on aspirin in early pregnancy though and say it can interfere with proper implantation. I asked about it due to fvl and they said to hold off on aspirin til 10wks.

flower that sounds like a great number of eggs. Hoping plenty will fertilise! How are you feeling?

diddly it took forever to get to 12wks as you will know but now (thank god) it's starting to go faster.

Frecklefire Fri 04-Sep-15 20:09:36

Hels** any idea why you didn't get a 'peak' fertility on those months??? Ive just had that this month - constant flashing smilies then back to liw fertility...

ThePopAndCry Fri 04-Sep-15 20:40:59

Me 39, DH 42



1st MMC May 2011 - 7 weeks, miscarried at 10 weeks



DS May 2012 - placenta praevia but other than that, all ok



2nd MMC Feb 2014 - 5/6 weeks, miscarried at 7 weeks



3rd MMC June 2014 - 5/6 weeks, miscarried at 12 weeks.
4th MMC February 2015 - no heartbeat at 20 week scan. Induced labour and gave birth to dd at 20+4. 
Have since been for lots of tests in lots of places and, thanks to the 'One in Four' book have now pretty much come to terms with the APS diagnosis from Liverpool after months of umming and ahhing and being in denial about it.

Waves to everybody. I may be quiet but I'm still reading and still following.

bumble Go girl! 15 weeks! Well done you ! x

hels268 Fri 04-Sep-15 20:42:36

freckle do you know i never got to the bottom of why...i remember feeling stressed at the time. It became a vicious circle. I started taking fertility supplements and omega 3 - those recommended by marilyn glenville, not cheap unfortunately -stuck to it religously for a while and looked after myself/exercised and touch wood my cycles evened out and i started getting the static smileys every month.

If i have more probs this time think i'd ask for my cycle/hormone levels to be monitored via the gp...i understand it is via blood tests x

Monten Fri 04-Sep-15 21:22:08

I hope it went well today missie, thinking of you. I've found the recovery from erpc's very straight forward so hope it is for you too. Be prepared for a bit of a hormone crash in the next couple of days. You might not get it but I certainly found it quite tough. Huge hug.

I'm another one who wholeheartedly recommends counselling/therapy. I went to see a therapist after my dad died and it was really life changing. It helped me so much. And I am so not 'that' sort of person, I thought I'd hate it. But I didn't.

pop lovely to hear from you and glad your feeling positive. Are you ttc again? do you mind explaining what the 1 in 4 book is and the APS diagnosis is?

Minnie74 Fri 04-Sep-15 22:59:30

Thanks for the new thread forest

My stats:
Me 40 (till next month) Dh 42
Mc1 2010 @6 weeks natural
Ds born dec 2011
Mc2 August 2014 @6 weeks natural
Mc3 March 2015 @12 weeks baby died 10+5 following two good scans. Couldn't grow cells but looked abnormal so presume bad egg. Had med management
Mc4 August 2015 @8+5 baby measured 8+5 at scan. On progesterone that time. Med management. Currently waiting for follow up testing results.

Had all rmc tests all normal, Coventry uNk cells also normal so pretty much I'm just old and not much I can do about that. Fed up, still bleeding, desperate to get ttc and get pregnant again but worried I never will. sad But booked a holiday to Northumberland in Oct (has some special memories for us). No point saving money for maternity leaves that don't happen. Also thinking about getting rid of all baby stuff in the hope of invoking the law of Sod!

missie hope today went as ok as it could. flowers take time to heal and get stronger x

bumble yay for 15 weeks. That seems to have whizzed by! (Obviously not for you!) And mrsd past half way- fab!

flower fingers crossed for your call tomorrow. Hope the egg/sperm combo have done what they need to do!

lilmissiehopeful Sat 05-Sep-15 07:26:59

Hello all, thanks so much for thinking of me and for your well wishes. Yesterday was quite an ordeal to be honest. Won't tell you the details now as I'm still just wiped and so so sad, but basically while the clinical side was fine and I was well looked after from that perspective, in every other way it was a shocker from start to finish. Felt like a herded dog for most of the day, ignored, no update on why it was all taking so much longer than they'd said it would, and literally no mention (until the kind theatre nurse who'd just come on shift as I was being discharged at 8.30 last night) of any words of humanity and empathy or even any recognition of why I was in there. Zero. It was just a procedure to them and I was one of a long list of people in day surgery that they needed to 'get through.' No mention of the miscarriage or 'sorry you have to go through this' even when they were getting my consent for the karotyping. Also had a couple of shocking incidents of v clear confidentiality breaches (not my own thankfully-almost laughable how lax they were with other patients' personal data) and frankly appalling disregard for people's privacy at such a vulnerable, distressing time. I'll be writing a strongly worded letter when I've calmed down a bit, that's for sure.

Sorry that was such a rant. On the plus side, (a) the D&C is done and so far anyway I've had v little physical pain, and bleeding Ian not too bad and (b) I have the referral to the RMC.

Emotionally I can't even really describe how I feel. Empty, bereft, angry? This time last week I was getting excited about a Saturday trip to John Lewis to buy baby a little jelly cat toy and first sleep suit like we did with dd. This is just the cruelest thing I can imagine ever going through. I know that of course there are even more heartbreaking things that can happen on this difficult journey we've all been on in our different ways. But at the moment all I can feel is the weight of our current bleak situation. Bumble you put it so well-it is a dark, shit time.

Sorry again for such a long, negative, 'me me me' post. Hopefully once hormones settle I'll be a bit more optimistic and better company on here, and I'll get to know your own situations. Might even join the FB group then too. Thanks again all for your comments and support. That Coventry study in particular does sound really promising so we'll definitely be checking it out once we've got our heads round this current phase.

Hope everyone has good weekends.

Floweroct2 Sat 05-Sep-15 07:46:28

Oh missie sorry you had such a horrid time I just don't understand how they can't have any compassion. Thinking of you x

Thanks for the good luck wishes, waiting for the call....

hels268 Sat 05-Sep-15 08:43:42

missie no need to apologise this is afterall about you, you have every right to feel the way you do.

I'm sorry you had such a rough time at the hospital, you absolutely have a reason to complain when you feel able to. Imagine that is every woman's experience there its worrying that its allowed to continue that way. I feel especially grateful now that everyone i came into contact with was aware of why i was there (with the exception of the recovery nurse but hey), and to varying degrees were all sensitive to that...they seemed to be all on board and can think that's because the consultant/team in charge of the EPU has provided some kind of leadership and applied standards of care. You could maybe direct your letter to that person. Perhaps get support from your local patients organisation if they have one.

Meanwhile focus on you and give yourself time xx

minnie northumberland is beautiful, not far from me. I say invoke the law of sod, spend money, clear things out, you might find it cathartic. I too am normal on all my tests so far, including uNK cells, which some would say is good, but makes it hard to know where to go next!

flower good luck!

Xxx

BumbleBee0 Sat 05-Sep-15 10:05:45

missie don't apologise, this is exactly what the thread is for, to offload and tell us all your feelings. So sorry the hospital were shit. Compassion and empathy costs nothing and it sounds like the hospital is a bit of a shambles to not have procedures in place to ensure women having erpcs are identified and treated more sensitively. Glad it went ok physically though and you're not too sore.
I think feeling numb is a very common feeling ...and then it hits sad
Your comments about planning what to buy struck a cord. With mc1 I never thought I wouldn't have the baby, right from the BFP. After having DS no problems I just assumed next time it would be fine too. I had pictured so many things, planned what to buy, picked my DS's new bedroom furniture (so he could vacate the nursery), thought about names, lots of things, my mum had already bought a double buggy in the sale. It took a long time to stop crying about that one, and I still feel sad now and that I should have a 7mth old.
So please don't feel alone and take your time to grieve and come to terms with it all. Big hugs xflowersx

Flower fingers crossed for the call!

minnie hugs to you too. The continuous bleeding is a complete piss take. (Well that's how I felt after mc1 - I think I almost laughed out loud at points at how cruel it seemed). I found telling myself it will end and not putting an expectation on it helped (slightly!). Have you contacted Coventry yet? Hopefully they will perform the scratch again which will help. I agree with pushing for heparin next time too. There is no evidence it causes harm so why not try it is my opinion. Oooh yes I say definitely invoke the law of sod by spending money!! I think a few of us booked holidays at similar points and indeed invoked the law of sod. Treat yourself to some nice things! Not sure about the baby things. Maybe get rid of a few and see how that feels... X

Allmychildrenhavepaws Sat 05-Sep-15 10:32:43

missie glad it's all over for you now, you can focus on grieving and recovering now the medical part's out the way...
Sorry you weren't treated better, that really is shit, but unfortunately they do do that procedure multiple times daily, and are trained to see things from a medical point of view, but I agree that they 'should' be more empathetic towards patients, we are not numbers, we are people with feelings...i would write your letter, but wait until you're feeling a little better physically?
I remember my first mmc when it all kicked off for real, the pain was horrific...went to a&e and was put in a bed in majors to wait for gyne...the gyne turned up (male) and was so very blunt and unsympathetic to what was happening to me, he casually remarked "you're not in labor, so no you can't be seen in maternity ward" I was so shocked by the lack of compassion, which made me cry even more at the time (which didn't help the pain as he was fishing clots out of my cervix) I felt quite traumatized by it tbh....dh almost completely sided with him, saying "they just see things from a medical point of view"
But surely given the type of job they do, be it medical/surgical or not, you would think they would have some people skills!!!
Arrrrh, sorry hun, just bought it all back for me a minute there....

Xx

BumbleBee0 Sat 05-Sep-15 11:54:45

Sorry forgot to say paws, are you having bloods drawn today? Hope they double up as expected. x

hels268 Sat 05-Sep-15 12:03:33

bumble thank you for the reply re coventry that helps, and congrats on 15 weeks! x

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