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Miscarriage/pregnancy loss

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

765 replies

forestnest · 04/09/2015 12:30

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)

OP posts:
Marchgirl · 03/01/2016 07:24

Lovely to hear from you again littlebear, and congratulations on your new arrival. So inspiring to hear food news stories, so thank you for taking the time to share it. All the best for you and your family xxx

CarrotVan · 04/01/2016 14:30

I haven't posted here for a while as I was taking a break awaiting gynae appointments and test results, starting anti-depressants and counselling...all the fun things.

History - DS1 born April 2013, conceived in second month of trying, totally straightforward pregnancy, emergency section. Started trying for a second in March 2015, MC1 (6 wks) in May, MC2 (6 wks) in July, MC3 (12 wks) in October when I also had chicken pox. Natural MC with no medical or surgical miscarriage.

Referred to Gynae who did a million blood tests and a scan and it all came back normal. I've now been referred to the RMC at the major maternity teaching hospital for further tests. Depending those tests I might be referred to Dr Quenby's research trial.

I feel a bit in limbo as we've been advised not to try whilst waiting to be seen at the RMC and the MCs (and other stresses) really took a toll on me so I'll likely be on anti-depressants for a few months (I started them early November).

Congratulations littlebears that's lovely news

katherinesmiles80 · 05/01/2016 19:48

Hi All, I am not sure if I am in the right place but would like advice on whether to wait for an NHS referral for tests following a recurrent miscarriage and how long it will take or if I should explore private options?

My history is I have 1 dd aged nearly 3, and over the last 14 months I have had 2 mc's (10 weeks and 12 weeks both complete natural mc's) and last week I had emergency surgery for an ectopic which had ruptured my right tube and so I unfortunately lost that. I am 36 in March and would like to move quickly in finding out if there is any underlying problem and think that will help me deal with the trauma of the last 14 months. Any advice appreciated!

Marchgirl · 06/01/2016 09:29

Welcome back carrot. Glad things have been progressing with your testing etc, and I hope the break and the counselling have proved helpful. It's such a lot to deal with in a short space of time that it's no wonder you have struggled. When you say you might get referred to prof quenby's research trial, do you mean to the implantation clinic, or to the RESPONSE trial, or something else?

If the former, then it's actually self referral. As long as you are 2 cycles clear of your last mc then you just do ov tests and call the admin when you get a positive. They will give you an appointment for 7-10 days later. It's a 360 one off fee.
If you mean the RESPONSE trial (not strictly speaking the profs trial, but coventry is one of the centres they are running it from), then the first phase of the trial is closed, but they are awaiting the next phase, assuming first phase results are positive. I'm fairly sure they will be from the girls I know on it.
Or perhaps there is a new trial starting? Good luck with whatever it is.

Welcome katherine, although sorry you find yourself here, and particularly your last loss, which sounds particularly traumatic. I gather that the remaining tube can move over to pick up the eggs from the damaged side, so hopefully your chances will still be very good. Our bodies are amazing things.

Re waiting or not, it's a really hard one. I waited and was glad I did. There is a massive variation between different areas. I only waited about 7 weeks for my nhs blood tests to be taken (plus 4 weeks for results), but others have waited much longer. I would absolutely get yourself in the nhs system anyway. It's good to have an nhs consultant so that you can get drugs prescribed and wangle extra scans/support. I would always suggest the nhs route first, as I really believe in them, but some other people have felt that the wait is too long. In hindsight, I actually felt that the wait was quite restorative, and i was much more ready to try again after the enforced break, even though at the time it was pretty tough to wait. If you are doing the nhs route they normally like to wait 6 weeks after the last pg to take the bloods, as pregnancy can affect the clotting test results. Some people on the thread have had bloods taken by their gp. Might be worth asking to see if you can speed things along this way. The other thing I would absolutely suggest you do is when you get the referral appointment through, phone the consultant's secretary and see if there are any cancellations, or ask to be put on the cancellation list. I did this and mentioned my age (37 at the time) as a factor for why I wanted the appt asap. She put me to the top of the cancellations list as the other two people were both in their 20s and we had all been referred at the same time. I got moved up by a month. Worth laying it on thick and getting on the right side of the admin - they hold all the power in terms of appointments.

My nhs testing came back normal, which was strangely disappointing, so after a 4th miscarriage I went to the Coventry implantation clinic (mentioned at length in various posts above), where they test for uterine natural killer cells (uNK). I tested high, and was prescribed steroids, heparin and progesterone for subsequent pgs. After a 5th loss I'm now 29+3 pg, and really feel like the steroids were my silver bullet.

Coventry is the only testing I've paid for, and it was very reasonable (because its nhs self funded) compared to the private options (which tip into the thousands of pounds), but if you have the money then this may not be an issue. Private testing wasn't really an option for us, and perhaps i am just lucky that my problem happened to be what coventry tested for.
If you have any other questions, feel free to ask.

And for both of you, we also have a group on fb now if you'd be interested in joining (it's a secret group, so invite only). Pm me if you want to join.

katherinesmiles80 · 06/01/2016 09:55

Marchgirl thank you so much for your support, advice and sharing your experiences with us all. I will follow up with my GP and try the NHS route first and see where that takes us. The idea of restoration through waiting is probably a good one to build up strength for whatever the road is ahead.

Congrats on the pg - you are in my thoughts and I hope that this time things work out for you. I'll pm you re the fb group. Thanks again.

CarrotVan · 06/01/2016 12:09

I'm not sure which trial Marchgirl. They said Nottingham (rather than Coventry) and Prof Quenby and it would relate to NK cells. It's way down the line though

Marchgirl · 06/01/2016 12:27

Ooo. I really hope they've got a double blind of their uNK testing/treatment. That is absolutely what we need!

CathLill · 09/01/2016 22:20

Hello
I hope you don't mind me barging in like this, but I was hoping that you may have advice/ experience to share...
My history:
2 easy, straightforward pregnancies and births June 2005 & March 2007.
2010 Nov. spontaneous loss at 19 weeks (baby died at 17 weeks).
Went back on pill.
2014 Nov. mmc at 20 week scan (died around 17 weeks) was taking asprin.
2015 Sept. Mmc at around 17 weeks was taking 40mg clexane.

I can't believe we're pregnant again, I'll be 6 weeks on Tuesday.
Doesn't look good, does it?
Anybody got any pearls for me?
Wwyd?
Thanks x

CathLill · 09/01/2016 22:27

Sorry, I should've mentioned we had all tests available (post mortems, infection swabs, sticky blood) but all came back clear.
X

Orrla · 10/01/2016 11:44

Its quite TMI I'm afraid.

I'm currently experiencing my 4th miscarriage. This time I was 6 weeks along.

I've been TTC since 2009, in 2011 after all tests etc diagnosed with unexplained infertility, got pregnant on Clomid with twins. Had a mmc @8 weeks on that pregnancy, which I was told probably was absorbed back into the growing placenta. Gave birth mid 2012 to a healthy baby.

In Jan 2013 and Sept 2013 I miscarried naturally at 5+6 and 8 weeks exactly, both surprise pregnancies. I had another round of tests to see if there were reasons for the miscarriages, and all tests on me were normal. They never tested tissue or suggested it to me and I was too shell shocked by each miscarriage I didn't think of it until after I stopped bleeding.

I got a surprise BFP on boxing day, but 2 days ago began to bleed. I've been in to A&E, examined by a gynae who initally seemed hopeful until she saw all the blood. I've a scan on Wednesday morning where I'll assume they will confirm a miscarriage.

Now to my questions. I think I've passed the sac. Being 6 weeks, its very small, about the size of a raisin, but it feels and looks different to all the other clots I'm passing. I think for my own sanity, I need to push for tissue testing. I have it in one of those urine sample pots in the fridge, and will bring it in on Wednesday. Do I need to add saline solution to the tube - it would make it easier for me to confirm I have the sac if its rinsed, but I don't want to do that if it means that it affects the sample.

Also, what kind of tests do I need to request on the tissue? I'm in Ireland and in my local hospital anyway, I've found that I needed to push for investigations and tests, they dont offer them, and try to fob you off when you ask, so I'll need to know what to ask them to test for, and insist on it. Can anyone tell me what standard tests are done on the NHS in this case?

I'm so sorry this sounds callous and clinical. I'm really not. I'm focusing on the practical aspects because if I let myself cry, I don't know when I'll be able to stop. I'm 40, and lost 4 of my 5 babies and no test so far has given us the answers.

Marchgirl · 10/01/2016 15:10

Welcome cath and orrla, but so sorry to hear about your losses, sounds like you've both been through a terrible ordeal.

cath, firstly congratulations on your bfp, i really hope this one works out for you. I have very little knowledge about causes of the slightly later mcs. I know that often it's a clotting thing, but it sounds like that's been ruled out and also the fact that you were treated with heparin last time suggests this isn't the cause. Have all your 12 week scans and blood tests come back normal? Has the karyotyping on the babies come back normal each time? I'm at a loss as to what might be the cause.
My 5 losses were all between 4 and a half and 12 and a half weeks, and I was found to have high uNK cells, but I don't think your profile is consistent with this being a cause for you. I know how scary it must be, and even more so because yours are later losses, but this is a new egg, new sperm and new lining. Hopefully this time you've got the right combination. Wish i had more words of wisdom for you, but mostly just hand holding for this difficult time ahead x

orrla, sorry that it appears you're going through this again. It's heartbreaking that it keeps happening There's no such thing as tmi on here. I actually can't remember what they said to put the sample in. I just left mine in the jar with nothing in it, but unfortunately they couldn't get a result. No idea whether this was because i didn't do it right or just one of those things. I know it's tricky to get the cells to grow again. Saline sounds familiar for what is good to add to it but I'm really not sure. I know formaldehyde is bad as someone's sample was ruined by them putting in the wrong thing. You could phone your epu and ask.

They normally do two types of testing on the tissue, the first is pathology, which i think tests for infections or other external factors that might have caused the mc. The second is the karyotyping, which will tell you if it had a genetic issue such as a trisomy or triploidy, or things like an unbalanced translocation.

If it is an unbalanced translocation, then they will most likely suggest that you and your partner are karyotyped, to see if you are carrying a balanced translocation that is being passed on (you can carry a balanced one and have no bad effects). This is quite rare (esp as you have a child), and you should bear in mind there is not much which can be done about it, so the advice is normally to just to keep trying, but they would offer you counselling to discuss the chance of it happening again. Like i say though, it's very unlikely.
If you find that it is a random chromosomal issue then again, the advice would be to try again. Many people on this board have found it reassuring to know it was a random event (after getting their heads around the sadness of this type of loss), and found trying again easier.

If the karyotyping comes back normal then you might want to consider some other testing to rule out some of the conditions not tested for on the nhs.
I went to the implantation clinic at Coventry for my uNK (uterine natural killer cells) testing. It's a self funded nhs research project, so you only pay for the cost of the testing. They would see you but obv this is quite far for you to come. There are other clinics that test uNK, and also some that test blood NK (slightly different but similar treatment), but I'm really not sure about what there is near you.

In the meantime, I'm wishing you the best of luck for your rescan, and will be hoping for a mini miracle for you. There are instances where one twin is lost but the other remains, so fingers crossed it is something like this. A big hug from me x

EmmyL2013 · 10/01/2016 21:49

Hi

I'm new to this forum, but just wanted to see if people think there is any hope after 3 miscarriages . I have a two year old daughter who i had no pregnancy problems other than preesclampsia at 40 weeks and had a c section . We started trying for another baby December 2014 , I had a miscarriage in July 2015 at 7 weeks , another in sept at 5 weeks and then last week when I was 7 weeks I started bleeding , early scan showed a sac with nothing in it , I then went on to have another miscarriage . I am booked in for blood tests but just so scared that my daughter will be an only child . I'm 35 and husband is 38

Marchgirl · 11/01/2016 10:01

Hi emmy, so sorry to hear this has happened to you again. I want to tell you very firmly that there is still hope. I have a dd who is now 3 and a half. Two years ago we started trying for a sibling. I had 5 mcs in the space of 17 months. Nhs testing after the first 3 showed no issues, but after mc4 i went to the Coventry implantation clinic where i was diagnosed with high uNK. I feel pg immediately after the 5th mc and am now 30+1 after treatment with steroids, heparin and progesterone.

Sounds like the last one is still very raw. Look after yourself and just take it a day at a time. It's definitely worth getting all the nhs tests first to see if any issues come up. After that you could look at other testing perhaps if nothing is showing up from the NHS ones.

It's so hard to keep going, but there is still hope. Everything always feels very bleak in those few weeks after a mc, but don't give up. X

EmmyL2013 · 11/01/2016 12:29

Thank you marchgirl , I really appreciate your advice . I will sit tight and wait for Nhs testing first and then get some more info about this coventry thing from you if that's ok ? I'm just in panic mode that it's my eggs that have declined , I just hope it's something more easily treatable . We are going to stop trying now until all testing is done . Thanks again as your story sounds like you went through a very difficult time but have come out of it with some amazing news !

Marchgirl · 11/01/2016 14:44

Still feels like a mountain to climb, but i can see the top now. We also have a fb group (secret one), where lots of the people that used to be on this board have migrated to (following on from the hacking incident several months ago). It's a fantastic source of support and collective knowledge. If you (or any of the other newbies) would be interested in joining, pm me your fb name and a description of your pic (or i think i can do it by email address) and I'll add you.

Marchgirl · 11/01/2016 14:46

Ps the fb group has people at all stages, from recently mc'd, through testing to pg and beyond, so there will be other people at your stage in the journey

Orrla · 12/01/2016 09:08

Marchgirl, thank you so much for your detailed post, I thought I replied the other day but my head has been all over the place a bit.

I'm in the Epu at their request at the moment. Just had the preliminary chat with midwife now back in the waiting room but not sure what they have planned next. Pregnancy test was very faintly positive and still lightly bleeding.

bootles · 12/01/2016 23:47

Congratulations littlebear, that's wonderful news, lovely to hear!

Hello carrot, katherine, cath, orla and emmy I'm so sorry you all find yourselves here, and for everyone's losses. I may have met some of you on the fb group now..
This is dreadful cop out I know, but I agree with all that march has said in her thoughtful and detailed posts. I just wanted to confirm that the secret fb group where everyone from the thread has migrated to, is indeed extremely supportive, and wherever you are on your journey, you won't feel alone there. Big hugs to all of you. I am consistently hopeless at keeping up, both here and on fb, sorry not to say more x

FraggleRock77 · 28/01/2016 19:25

Hello. New to this thread. I feel guilty even having a moan about my situation, when most of you have had such difficult journeys!
One wonderful DS aged 2. D&C June 13 MMC 8 Wks. Another MMC 8 Wks and D&C tomorrow! Was taking progesterone. Age 38. Can you develop killer cells. Is it worth getting a private consult/tests. Just keep being told it's normal and bad luck.

Loopyaboutmy2boys · 28/01/2016 19:54

I haven't been on here much lately as we decamped to Facebook when this site kept being hacked. Just felt like a quick read of the thread. Fraggle yes it is very possible for you to have a child and then develop high NK cells. March is just one example of this, she had a child and then had many miscarriages and then tested for high NK cells at Coventry and there are plenty of others who have tested high there too. They will see you after just 1 MC.

FraggleRock77 · 28/01/2016 19:56

Thank you for the reply. Can you self refer? Does it mean having a womb biopsy taken? x

BumbleBee0 · 29/01/2016 17:55

Hello everyone,
I've not been on here for a while but thought I'd check in today.
So sorry to see many newbies on here - I'm very sorry to read of your losses.
Thanks for the update littlebear, I was just looking at the stats sheet and wondered how you and some others were.

fraggle following on from what loopy said, there are quite a few ladies on this thread who've had dc1 no problem and then gone on to suffer mcs and then diagnosed with high uNK cells (myself included). I'm not sure if you saw but Prof Quenby (who does the biopsy at covebtry) did a webchat on mn today and said sometimes the womb lining after pg can deteriorate (hence the mcs), and for others it can improve.
You can self refer to Coventry and it costs £360 which includes consultation, scan, biopsy, results via email and follow up phone consultation, so you only have to make the trip once.
I went after 2mcs (because I heard about it from the ladies on here) and had high uNK cells (9.6%). I'm now 36wks pg on the Coventry protocol. There are many other success stories too.

FraggleRock77 · 31/01/2016 17:53

Thank you Bumble. Really helpful x

FraggleRock77 · 31/01/2016 18:09

Would someone be kind enough to post the Coventry clinic referral details please. Can't find them online x

CathLill · 31/01/2016 20:20

Hi all
Thanks March for your considered reply and kind words from you all.
Well I did miscarry again. Started with brown spotting and steadily worstened to red, I passed a lot on Thursday (just over 8 weeks) heavy bleeding still. What a bugger.
I hadn't even told my gp I was pregnant or booked in with mw...must be getting cynical!
If this bleeding doesn't slow down I might go see doc next week and will ask if there's anything to be done.
I want to try again but know that something needs to be done for my malfunctioning womb first!
I don't think a private clinic is a route I can take. Is there another option?
Any more advice will be much appreciated, my googling finger is worn out!
Thanks again, and all good wishes to you xxx