Recurrent Miscarriage Support Thread 21 - tests, treatment, trying again.

[Justonemoretime]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

Hi Sasha so sorry you find yourself in such a horrible place. Waiting that week to the next scan is such a horrid place to be.

For NHS tests I would make appointment with your GP and ask for referral, mention you'd like to go to St Mary's. Your GP may arrange some blood tests before they'll refer you just to rule some basic things out. Once referred you should then get a letter in the post to book the appointment online. I had a choice of 3 places when I booked online based on what I'd told the GP.

Did you see a doctor following the scan? What did they say?

Oh Sasha I'm so very sorry. Keep everything crossed but I do also know that feeling of no hope.

You should get referred as standard but I didn't do St Mary's, I'm Worcester so I'm sure someone else can advise.

counting big hugs and lots of love.

Good luck to the Coventry peeps!!!!!

Me and DP have made up, Jady you aren't the only one falling out with the oh.

And Freckle you were so right. Sickness is back with a vengeance!!! Made it to work for 1 hour today!! Back home on sofa and feel dreadful!

Good luck cheesy and march looking forward to hearing more positive things from Cov!

counting thinking of you hon x

sasha sorry you find yourself back on here. Could your dates be wrong maybe? That wait for a second scan is horrendous. I think a gp referral to your local Rmc is probably the quickest way from what others have experienced on here. Don't know about St Mary's but I think your GP could refer you to wherever you want to go. I'm sure someone more knowledgable will be a long soon. I know it's hard to think positive but fingers crossed it's just a slow grower and everything will be fine on your next scan. X

looking forward to updates cheesy and march! Hope the day is going well for both of you!

So, 'mate' from work that i fell out with because she told my boss i shouldn't be working after mc 3 is pregnant. I've sort of made it up with her because a)work is too hard already for a feud and b)despite the fact i think 25% of her motive was self interest, 25% was gossiping, i think it is possible 50% was she was worried about me. But God she is pissing me off (after being one of my closest pals actually!) She had a chem preg last june, and another in jan and has got pregnant without even having a period since. She's just text me, after a wonderful week in majorca, to complain about her morning sickness!!!! WTF!!!! Despite the fact she knows i've had 3 mc in the last year!!! So i text back "i'm "sorry you've been suffering with sickness, but, as you know, you'd have more complaint if the symptoms suddenly disappeared, my love, and perhaps a friend who is not in my situation would lend more sympathetic ears in this case?" I think i am being VERY restrained when what i basically want to write is FUCK OFF, AND WHEN YOU GET THERE FUCK OFF SOME MORE! Fucking fuckwit.

freckle your friend is a bit of an insensitive cow! I think your reply was fab- very restrained but obvious what you thought of her.

My rant for the day- the saga of getting a fucking rmc appointment continues! Just had a call from my GP's secretary who was typing up my expedited referral last thurs (or so I was led to believe!) to ask why I needed it speeding up. She said they received a referral from the Epu on 5/3 and it's now only being done! Even though the bookings place see a referral on 18/3. It's now six weeks since we saw the nurse who said you'll be called back within 6 weeks. Still no fucking appointment letter! I'm so fucked off I could cry!

freckle Wow, that is one insensitive colleague. And it's very sad that she should really know better than complain to you. I think your reply was perfect - polite, but no doubt to the point. Hope she gets the message (literally). I would just ignore any further messages from her, it's not worth getting involved with someone like this.

sasha So so sorry you find yourself back again. We are truly the club that no one wants to belong to I agree that your reassurance scan was anything but, and that the measurements really don't look great - unless you ovulated late? You know your cycle best... The wait is so awful, can you distract yourself somehow? I feel so sorry for your DH as well.
Ask your EPU about the procedure of how you get referred, you might be able to leave out the GP and they can get the ball rolling for testing (that's how it worked for me). I so wish you wouldn't have to think about things like that!

Best of luck to all those at Coventry today. I'm jealous, I wish I had a justification to go...

Well done on the restraint Freckle and well done for saying something. I just don't get why someone would do that.. Maybe if you'd text her to ask how she was doing and it was an "ok, but morning sickness is quite bad a the mo" you might understand, but to text out the blue to complain about it is so insensitive.

Glad you and DP have made up Brummie. I think there's just too much pressure at mo, neither of us needs to say anything, but DTD just feels too contrived and just fails. Must be even harder for you waiting until after the hystereoscopy (sp) though. Feels such a long time since Jan. Just back from counselling though and this week's objective is for every negative thought to focus on the positive!

Hi everyone! I'm new here. Me and my husband had our oldest in 2008, so when we decided to give him a brother or sister we wasn't prepared for the rollcoaster that would happen. Our first miscarrige Was June of 2010 I had took a test feeling odd and it was positve but the line never progressed and a week later I started to bleed- it was a early miscarrige at about 4 1/2 weeks we started trying again and didn't wait a month like told because research had shown waiting doesn't increase chances I found out October 10th 2010 we was expecting again, we was getting married on 15th October but I was just so excited I had some bad pains on my wedding day that were sharp and stabby but I didn't bleed so we carried on, however the next day I was bleeding heavily and in lots of pain I was inconsolable in hospital I was admitted for hemorrhaging they hurt me looking at my cervix and trying to get blood multiple times I was left very depressed following that loss. We stated trying again December 2010 and conceived again February 2011 because of the past few months I was petrified I was scared just standing up! I wasn't prepared to miscarry again but I did six weeks exactly and I started to bleed. We went to the doctors who reffered us for tests there was a three month wait but there was no way I could try again without being Seen I grew depressed and the reality of it all hurt so much. The tests were all normal and they put it down to all bad luck. I accepted it then.... A year to the day after our loss I conceived again. We were now in Feb 2012 and I don't know how but I was calm. A early scan at 7weeks shown everything was perfect and we had passed as far as we had got previously... There was a heartbeat and we was told this pregnancy was very viable and my hormones were all excellent. I delivered baby two another beautiful boy in October 2012. He healed my heart so so much. So we decided December 2014 to try for our last baby baby three to complete us. Tests were normal back in 2011 it's bad luck as they said. We Found out on 17th Feb we found out we was penang pregnant! It started of well bad sickness sore boobs peeing all the time.... Then suddenly I started spotting except I was 7weeks not as early as any other loss the spotting was brown so I thought it would be Ok but a scan shown my beautiful baby had stopped growing and died at 7+6. This was on 8th April I was meant to go back in 7 days because it was a missed miscarrige I asked for a scan picture to treasure and I went bed staring at it hoping they was wrong but knowing they wasn't. I stroked my belly and asked for one more night pregnant carrying baby. I didn't want a d and c or medication I wawanted to miscarry naturally at home around my husband and boys. I didn't want to be in a maternity ward after the experience of the few years earlier. I woke up and started to bleed. (9th April) currently I'm mid of my 4th miscarrige. Heartbroken doesn't explain it and I've cried so Much. Can it still be bad luck? I'm looking into paying private for some tests becaue the thought of having more is unbearable. Sorry for the Sa xxx

counting hope the wave has passed and you feel a bit better today.

sasha I'm so sorry you are in limbo and facing up to MC3, it's truly shit. Did you have surgical management previous times? One thing I'd recommend if the next scan confirms your fears is to push for genetic testing on the foetal tissue (even if it's tiny I think they can use cells from the sac etc, but more chance of getting the tissue via ERPC) as even after 4MC I was still being told it was chromosomal and I was unlucky/very unlucky/extremely unlucky/so unlucky we can't help you.... until they actually tested the tissues from Mc4 and they were normal
St Mary's is the top RMC Centre in the UK so if that's a choice in your area go there, but they won't test for immune or implantation issues so you may want to consider Coventry alongside their investigations.

On which note good luck to Coventry peeps today!

Hi becca so sorry to hear about your losses as per my post to sasha I'd pursue genetic tests on the foetus. That doesn't preclude miscarrying naturally. TMI but I caught material to test from my Mc4 in a sieve....
You may also want to look into testing at the Coventry implantation clinic. They investigate how the uterus prepares for pregnancy, and think this is critical for how receptive and selective the lining is for implantation, and also look at NK cells which are a marker for immune issues. So many of us on the thread have been helped by their protocols. Can't write more now, have school run to do but will check back later, sorry if that's a bit short and cryptic!

Becca what a rollercoaster. I'm sorry you are mc again. You've come to the right place for great advice and company for this hellish journey. Were you given any treatment for ds2? Will they refer you to the rmc unit again in view of your history? One option to consider is to go to Coventry to have a biopsy for uterine natural killer cells. You would have to wait 2 cycles post current mc. It's £360, but you'd be listened to and most probably come away with a treatment plan that would at least maximise your chances even if your uNK cells are low. I'm certain some of the more experienced ladies on here can explain it better than me and maybe suggest some other options. Don't feel alone. We're here... x

Thank you both of you.mrsdiddlydoo that's the thing I cant understand I had no treatment with either of my son's, the pregnancys was smooth and progressed perfectly. The miscarrige work up they did at after mc3 was hormones ultrasound history bloods full thrombophilla screen and phospholipid syndrome. They thought that's what caused the miscarriages at first because I had a positve but to be diagnosed you need two positive tests and my second test was normal.my mum had simular issues she had three losses. She's been a brilliant support but I know she's hurting seeing me suffer. She has terminal cancer and I'm trying not to worry her. :-( bakingtins that's what I've been told lightning has striked numerous times and it's likely chromosomal. If I manage to catch tissue that's something I will pursue. Me and my husband had blood tests to see if we had a balanced translocation we could pass on and cause a unbalanced and savere genetic issue but as everything else we tested Negative. Sorry you all find yourself here too. Xxxx

Hi everyone,

Another newbie poster but I have been a long time lurker.

My background is:
Me 34 DP is 35
TTC since Sept 2012
MMC1 May 2013 - Natural miscarriage
MMC2 Mar 2014 (heartbeat seen at 6 weeks, started to bleed at 8 weeks on holiday) Surgically managed, High dose folic Acid and baby Aspirin recommended after this one.
MMC3 August 2014 - Natural miscarriage. I was referred to the wrong department and saw a general Gynae doctor who recommended Progesterone from BFP and Baby aspirin from TTC
Ectopic pregnancy Jan 2015 - Left tube removed.

I've now been referred to the RMC in Shrewsbury, went to see them at the end of last month and had blood tests and a couple of swabs taken. I've got a referral to have an ultrasound of my pelvic area and have to return to the RMC at end of June.

I had my first counselling session last week which was kind of helpful.

I've also gone back on the pill while I'm trying to get my head around everything. I know this is sounds crazy but for the past 2 and half years my whole life has been about TTC. When we have sex, what plans we can make if I'm pregnant or not. I just want a few months of fun.

I'm trying to lose weight before I have to go back for my results at the end of June as my BMI is 32 and gets mentioned at every appointment I've been to.

Anyway enough waffling from me.

If you had the standard NHS workup after MC3 probably nothing to be gained from going back. In 50% of cases everything is normal, and IME all those women get the 'unlucky' spiel. I'm sure that not all those women have had 3 chromosome abnormalities in a row. Coventry theories about receptivity/selectivity may be relevant here - they think that in some women the decidualisation (lining prep for pregnancy) doesn't happen properly leading to implantation of dodgy embryos being allowed, so you get pregnant easily but with substandard embryos that are then miscarried early. This is also talked about as 'hyper fertility' (pretty hurtful when it actually means you miscarry a lot!) but the Coventry protocol actually offers some hope of improving the lining so it functions more normally rather than just trying again and again. In my case the Coventry tests showed I had high uNK cells, something which is also more common in women with previous pregnancies, and possibly more common with mothers of boys, though I don't know if the Profs subscribe to that theory. There are a big group of us that had a first child no problem then started to miscarry repeatedly.

sasha you can self refer - Google Coventry implantation clinic or Professor Siobhan Quenby and contact her secretary Kerri. If you have any probs I'll dig out her email address for you. You have to be at least 2 cycles post miscarriage, not pregnant and 7-10 days post ov, and clinics are held Monday and Friday. There's no problem getting an appointment, they fit you in whenever you meet those criteria. It's self-funded NHS treatment and costs £360 for consultation, uterine biopsy and then phone consult to discuss results about a month later. They send a written protocol and in most cases the recommendations can be auctioned locally, so you only need to travel once.

strubidoo welcome, glad you have de-lurked

Oh Becca I'm so sorry.

I echo everyone else on here, I absolutely cannot recommend Coventry enough. I went a couple of weeks ago and they are great

We are getting ready to start again - it's taken a long time since January to get here but all our ducks are nearly in a row and we are getting ready.

We are all here for you xx

actioned not auctioned. Auctioning recommendations would be odd.

3 newbies, a lot of pain out there. Hi there Sasha, Becca and Stru. Sorry you are here, but hope the support helps you like it's helped me these past couple of months. We're all going through similar stages on here and there are quite a few silver lining baby stories happening and bfp recently which is really encouraging.

Omg minnie**! i just rang the booking/referral line for rmc unit at Leeds and i think i spoke to a subhuman life form!!! They could barely speak, i mean, fluency/clarity was a REAL issue, it was as if they'd been anethatised! I gave up trying to communicate with them in the end, it's no wonder their admin is sooooo messed up, i think their booking office is being worked by ZOMBIES!

Brummie** - warning, 5 days, 5 days of running to the bathroom. At least i've lost a few pounds! X

freckle so you've 'met' the helpful ladies!

becca and stru hi, welcome and sorry you have to be here. It's a crap situation but everyone is lovely and full of knowledge too. It's been my saviour for the last 6 weeks.

Welcome becca and strubi. Sorry you find yourselves here. I hope you find some support here from these lovely ladies.
sasha, so sorry to see you back here and that you are in the awful limbo. We all know what that's like and it's just the pits. Hope time goes quickly until the next scan.

I'm just on my way back from Coventry and feeling very positive indeed. Prof brosens was lovely and v funny too. Things in addition to what others have reported are as follows.

He confirmed my suspicion that he thinks the reason I didn't get pg first month of trying (I usually do) and also potentially the reason for the very early loss last time is likely to have been because i was on progesterone from 7dpo and this has made my (usually overly receptive) uterus more selective and made it reject sub standard eggs. Whilst it makes me sad that something I did potentially made me mc, to my mind this was absolutely the right thing to do as it avoided an inevitable later loss.

I had misunderstood the immune response thing. I thought it was that an increased immune response was causing rejection of the foetus, but I think from what prof brosens says that it is actually like this. In a normal pg with a properly prepared lining, cells around the developing foetus block the signal that says there is an invader from being sent to the brain, so that the foetus can develop workout being attacked. In a lining that is not properly prepared, this signal is not properly blocked,so the normal immune response that you would get to a foreign body occurs and mc results. So it's not an overactive immune response but more a lack of immune suppression. I hope I've got that right!
I asked him about the response trial and he was completely supportive of me joining if I don't get high nk results. He says it's the most exciting research in years but wishes they were giving it from before bfp as he thinks it would be more effective.

My lining looked fine (they didn't tell me the thickness but said it was ok), they said there wasn't much blood in the biopsy sample which they seemed to suggest was good?!? Bit ouchy but fine now. Feeling positive that I've got either Coventry protocol or response trial for next time.

cloud, I certainly wouldn't say you've no reason/excuse to go. Their research is all about people implanting unsuitable eggs,which would fit your circumstance too and the scratch may help conception for several months. I'm not saying you should go,of course that's up to you, but the impression I got was that chromosomally abnormal foetuses might be expected in the group that they are researching/treating. Food for thought anyway.
Sorry for the epic post everyone. Just wanted to get it down in words!

Hi everyone! Will catch up properly in a bit but just wanted to let you know coventry went well and prof Brosens was lovely and funny just like march says.

Just marking my place - I've been away for the weekend and it's kicked me off! Will read back and catch up :)

march that's super info, thank you, and so glad it went well. Looking forward to cheesy's update!

counting I am with all the others who are standing right with you. I am so sorry.

Hello, but sorry you find yourself here, to the newbies.

minnie and freckle I'm so glad I haven't had to deal with this person but your descriptions did make me chuckle! Sorry! X

Glad all went ok Cheesy and March - Prof B is ace!

Echoing everyone else, so sorry you find yourself Strubi - these ladies and the support is amazing