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

[forestnest]

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)

Hi all. Not had a good day today. Seems like literally everything I see/read/hear regarding RPL makes me feel worse! I seem to be focussing completely on the terrible heart breaking stories out there. It's completely mad of me (and hopefully it's just the hormones talking as I'm still bleeding), but even though we have had no tests done at all, I have basically written myself off as a recurrent miscarriage sufferer who will suffer and eventually run out of energy and give up, while everyone I know has babies as easy as coughing, and runs off into the sunset. Oh god, someone talk some sense to me.

Hugs to you barking x

waiting4change it most likely is your hormones, its ok to be upset. don't let it become you. it will happen you just need to give it time. i know 3 people who had rmc and gone on to have successful pregnancies. don't worry about being strong its ok to be upset

Oh barking I'm so so sorry to hear this. Please don't give up, just take some time. Hope you've got lots of support xxxx

waiting welcome and so sorry to hear of your losses and glad you have found us. I had 4 mc's all different experiences all very early on, they seem to get earlier each time. You are not alone we have all felt and continue to feel like that from time to time as somebody else said you have your up and down days but don't ever give up. I'm on the fbk group, I find it much easier to keep up with everyone on there, but try to keep in on here too as this is the place I found so much hope and support when I felt like I was the only woman in the world suffering miscarriages. xx

Hi y'all

I'm joining you if that's OK. I've only had two miscarriages but they've been pretty traumatic so feeling like I need some support.

My stats...
Me- 35
Dh- 37
Baby number 1: 2012 quick conception, normal pregnancy, perfect boy.
Mc#1-July 15 - 11 weeks and 4 days, mmc, had mva, retained products, suspected molar pregnancy so erpc 3 weeks later.
Mc#2- November (discovered yesterday). I had a scan at 7 weeks which was lovely and normal, then started bleeding yesterday and was scanned. Showed that the baby died at 7 ish weeks.

Absolutely gutted and not sure what I'm doing wrong. I am trying to go naturally at the moment but might call them back on Monday if I'm feeling rubbish. They recommended I try and avoid erpc again because I've had them so recently. I'm so nervous and just can't stop thinking about what should have been. I keep forgetting what's happened and thinking of all the plans we had for the summer.

Horrible.

Welcome clock, but so sorry you find yourself here. The first thing to say is that you didn't do anything wrong. This is not your fault. I know it's really hard not to think that way, but you mustn't.

It is a lot of intervention to have in a short space of time, but there are plenty of people here who have had the same and been ok. Have they offered you medical management as another option? This is the in between option, as you would avoid surgery, but it would hopefully hurry things along a little. I waited nearly 3 weeks for a natural mc for my first, but ended up with med man as i couldn't cope with still throwing up in the end. Hoping yours comes quickly so you can avoid any intervention though.

Have they referred you for any testing? Strictly speaking the nhs rules say no testing until after 3mc (the tommy's campaign is currently trying to change this), but some people have had some success with either a referral after 2 (particularly if they had other factors against them, like age, difficulty falling pg or anxiety etc), or through their gp, running a few basic tests. It might be worth looking into this to get the ball rolling. Some people have also been to Coventry implantation clinic after 2mc (they'll take you after the first I think). Although their testing is very specifically uterine natural killer cells (uNK), and not the standard nhs ones (clotting tests etc).
There are also several people on here (and the fb group) who have had success with no treatment at all, so even if you weren't ready to go down the testing route, there is still hope. We are here for handholding and help/advice whatever you decide to do next. Take care of yourself over the next few days x

Thanks so much for your reply March. They've not mentioned testing, just that I'm essentially normal still because 2 is ok (it's so totally not).

She mentioned medical management but to be honest I was so shocked I just wanted to go home. I work in the hospital so I'd gone from being at work, happily chatting about plans and how excited I was, to bleeding and finding out within am hour and was utterly stunned. The consultant nurse was brilliant and said that was fine and to phone them on Monday and I could go in and have misoprostil. I think she was thinking it would be good to avoid me bleeding over the weekend (i had a massive bleed last time).

I think if they were early losses I'd feel slightly less... I don't know... Not sad, maybe desperate? Getting to almost the dating scan both times is awful. I've basically been pregnant since April. It feels like time is slipping away from me.

clock I'm sorry you find yourself here and that you are going through another mc. I've 'only' had 2 mc and didn't 'qualify' for NHS testing. It doesn't matter whether it's 2, 3 or more, it's still heartbreaking and we have none of those 'you must have had x mc' rules on here. Keep an eye on the bleeding if you've had problems with it before. And seek medical attention if it gets too heavy. I found my go helpful and he did a few tests for me which might be a route for you if you can't get referred to the rmc unit. I'd push them on age or anxiety if you can because it know ladies over 35 sometimes manage this. Both my losses were Late first trimester and I found them devastating. The other option is to go private for testing or visit Coventry as march suggested. A lot of testing doesn't find anything but can offer some peace of mind (or the opposite). You're chances of a successful pregnancy next time still out weigh the chances of a mc even though it won't feel like it right now.

I might do that actually. I'm friends with one of the gynae consultants so might get something at least. My plan is to call on Monday (or sooner if anything happens) and make a plan to go in on Tuesday as my DS is in preschool. I'll ask then. Do I need to keep anything I pass for testing? I'm confused about natural miscarriage, I kind of just want it sorted.

I just got my maternity exemption certificate. Has it changed? It says to keep using it even if I miscarry. I'm sure the last one said to return it.

Could anyone add me to the fb group?

Clock if you pm me your Facebook name/email and let me know what your profile pic looks like I think I can invite you.

I've never got far enough for the certificate so I can't help, sorry.

Hi all. I've been lurking over the last few months whilst patiently waiting for my Coventry appt and to be able to TTC again. Finally got seen a couple of weeks ago and now waiting for the results. Just wondering about your experience of post-biopsy AF. Mine just came but it's so much lighter than my usual light flow - (excuse me for being too graphic) only needing panty liner! This is so strange.

Hi gakay, hope you found coventry helpful. I found my af started a few days early with lighter than normal spotting, then got into full flow around normal time, so it was hard to pinpoint what was cd1, however, I ov'd at the same time I would have done in a normal cycle, if the spotting hadn't started early, so I took this as a false start.
You may find you get full flow in a couple of days, but I think also people have experienced heavier or lighter flow after coventry, so basically anything goes! Shouldn't affect your chances of ttc this month but might be worth ov testing / temping to confirm when ov occurs if you're anything like my cycle post cov. Good luck!

Hi ladies, wondered if I could rejoin the thread? Think I need a bit of hand holding at the mo. History:

DS (age 4)

Ectopic - July 2014
3 MCs (2010, Oct 2014, Jan 2015)
MMC - August 2015 at 12 weeks - knew it wasn't going anywhere from about 7 weeks, but couldn't confirm as pole appeared and disappeared. Then I haemorrhaged and underwent emergency D&C.

Have lost 4 since July last year, so I think perhaps a lot happening in a short space of time is contributing to my low mood. No reason identified for MCs as yet.

I am currently 7+4 weeks pregnant. Saw heartbeat last week (6+4), but started bleeding with small clots Mon night. My amazing EPU got me in for scan Tues morning and saw heartbeat still there and no cause for bleeding which has mostly settled. Consultant has suggested I could up the cyclogest to twice a day which I have, though not sure if it'll make a huge amount of difference.

I just feel awful, the hormones make me want to cry all the time, I'm unbelievably anxious and I'm scared to walk around too much in case I bleed again. I really need to go back to work at some point too. I know cyclogest can cause bleeding sometimes, has anyone else had this and it all worked out ok?
Sorry for miserable post, usually manage to stay quite positive, but having horrible week, thanks for any advice in advance x

Hi ba8y congratulations on your bfp but big hand hold and hug at this trying time. I've not heard much about progesterone causing bleeding but know it can irritate the cervix. We've had many discussions on here about the best place to 'insert' it and a lot of us have used the back door or alternated doses between both.

I always find the most anxious time to be after a bleed or some spotting. Taking it easy is probably more important than work right now. I find the longer I go without another incident, slowly the more confident I become. Lots of ladies on here have had bleeding during pregnancy and it hasn't been the end of things. It's really positive that you've seen a heartbeat since the bleed. And The chances of this one working still outweigh the chances of another mc. Have you anymore scans booked? Please don't apologise for being miserable. Mc is shitty. Rmc is even more so and drives us all slowly insane. Xx

Thank you for your lovely post mrsdiddlydoo, you are right of course that resting now is more important than work - difficult to shake the guilt of being off sick though! I've got a private Nuchal scan booked for just before Christmas - have had previous triploidy so have low threshold for cvs and my nhs scan not till 13+2 weeks in the new year. My EPU are amazing and I know will be happy to do another reassurance scan before that, was thinking at about 9 weeks or so.

That's really interesting re pessaries - I didn't know I could put them anywhere else! Do they not need to be in close proximity to the cervix?
Thanks again x

Oh I'm glad you have a good epu ba8y! Makes a big difference. I can't explain any science bit but I promise you that you can put the pessaries in either place. They din't have to be close to the cervix. Maybe someone else can expand on it! It gets a bit quiet on here these days because we have an active fb group.

If you'd like to join pm me your Facebook name/email and let me know what your profile pic looks like and i will try to invite you. It's a secret group so totally private.

Welcome ba8y, and congratulations on your pregnancy. It's so nerve wracking when you have a bleed, but lots of ladies on here (and the fb group) have had bleeds that have not been problematic. I had a little one at around 4-5 weeks, but many have had them later. I had a haematoma this time, so was expecting a later bleed if it went (luckily it didn't as i still would have panicked), but perhaps this is what yours was. Impossible to tell, but glad it's stopped now. I think as rmc people we are unfortunately just more prone to these little problems (and probably also more aware of them).
On the cyclogest, mrsd is absolutely right, you can use either entrance as i believe it's absorbed into the body rather than just floating around. I would have done just the back door but it irritated some piles and caused bleeding which scared me, so I had to use the front door, which was much more of a pain in terms of mess and getting it to stay in. Lots of people used back door in the morning (when active) and front door at night (when lying down, so there was no risk of falling out).
Big hugs for you. It's an awful time, but it does get easier. Hope you can get another scan sorted xx

Hope you're feeling a bit better ba8y and taking it easy

Hi ladies, thanks so much for your messages yesterday. Better day today so feeling more positive! Hope you two are well? Will think about the Facebook group - not sure at the moment! x

Hi Ladies, I hope you don't mind me popping in. Someone on the conception boards suggested you may be the ppl to ask my question to about the NK biopsy that Dr Quenby performs.
Little bit of history is that my husband and I have been trying for 11 months with no success. Not even the hint of a BFP. Had initial tests, internal ultrasound, SA and bloods which all looked good. Then had a chat with a non-medical fertility expert and mentioned I had rheumatoid arthritis and straight away she said I need a biopsy as I will likely have high NK cells which may be preventing implantation.
Interestingly I did get pregnant once, 5 years ago but lost it very early and I was having steroid injections at the time for my arthritis. So it feels like some of this might make sense if the steroids were keeping the NK cells at bay at least for a short time.
My question really is, if the biopsy shows high NK cells, what are the next steps? Is it likely I could get pregnant naturally with medication or do I need to prepare myself for the fact I will likely need IVF or some other assistance?
Thanks for taking the time to read.

Welcome panda, but sorry to hear you've had such a difficult time. Unfortunately I know very little about your condition, but I can talk a little about coventry. They test specifically for uterine natural killer cells (uNK) rather than blood NK. There are other places that test for blood NK and they can give different results. If you go to coventry and it comes back normal it might be worth looking into this too.

If your uNK level is greater than 5% coventry recommend prednisolone, normally at 20mg per day, from bfp to 13 weeks. They may also prescribe heparin and progesterone. Your circumstance is a bit different to most of the women here in that you haven't had a series of recent miscarriages, but coventry will test after only one mc, I believe, so your loss 5 years ago should be enough for them to agree to test. I gather that if your level is extremely high then they may offer some treatment before bfp to bring it down before conception. I'm not entirely sure what treatment this is, but they'd discuss this with you at the consult.

I take it you're not on any treatment for your arthritis currently (like methotrexate?)

I'm really not sure about whether you will need extra help to fall pregnant. Most of the people who visit coventry that have been on this board have had either normal or moderately high levels. I don't know anyone whose level was so high that they got help before bfp, so I presume this could help if that's your situation. It also depends on whether it is this or something else that is causing the fertility problem of course. I think the fact that you have been pregnant naturally before (albeit when you were on treatment) is a good sign, as perhaps it suggests you just need the right treatment again, but I'm sure that's not much comfort at the moment for you, so I hope that doesn't come across as that infuriating 'at least you know you can get pregnant' line that people who have no idea reel off.

It would be worth contacting coventry I think to ask their advice on whether it would be worth going. The admin person is called kerri geraghty if you want more info. If you do decide to go, you contact them when you ovulate (testing with the sticks), and they will book you in 7 to 10 days later. There is normally just a single appointment then everything else like results and follow up are done by email and phone. It's £360 one off fee. They normal only have appointments Mondays and Fridays. Hope this helps. If you have any more questions then feel free to ask anything. Good luck x

panda if you have high nk cells and that's the only thing preventing you getting pg there's no reason to assume you would need ivf, that would be the last resort. Possible options would be prednisolone from ovulation, or if assistance was used, then a monitored clomid cycle with prednisolone from ovulation. If you had to move to the next step then IUI is far less invasive than Ivf.

I realise 11 months may seem like a long time to you, but plenty of women manage a natural pregnancy after ttc 1-2 years. After 1 year you can go to your gp and ask for all the standard fertility tests. If they come back clear then it probably is worth a trip to coventry (depending on where you are in the country there are other options, I went to Thornbury hospital in Sheffield).

Hi Barking and March thanks a lot for taking the time to reply. It's good to hear I may be a while of having to go down the IVF route, although of course I'd do anything to have a baby.
I'm currently not taking anything for my arthritis. I was on methotrexate but came off it 6 months before we started trying. I was on it before when I got pregnant as it actually wasn't planned. So annoyingly I seemed to be able to get pregnant when not trying to! I'd always assumed it was the methotrexate which made me lose it but now I'm not so sure.
Coventry is actually really close to where I live. So I'm hoping I can get an appointment in the new year.
Really hope we all get what we so desperately want.
x