Recurrent miscarriage testing and beyond.. Part 6.. Over here!

[orangebowl]

We have filled up the last thread so here is the next.. Deep breath and grit your teeth for the roller coaster of emotions that continues... Hope tea and butterfly and all find it!

[teaandchocolate]

Not at all it could be a valid issue. I asked my consultant how low progesterone could have caused my mmc as I thought if my progesterone was low I would bleed - as progesterone stops bleeding. But he said that it is still possible although couldn't even tell me why.

[aMuminwaiting]

So sorry for everyone out there going through yet another loss. It's an indescribable pain. I've had six miscarriages now. The first and last were quite late, to the point that I got to hold them both and the others were all early. I've had miscarriages at home, miscarriages at the hospital, a missed miscarriage where everything seemed to be fine until I saw the baby was way too small on the screen and there was no heartbeat, surgery to try and save the pregnancy, different drugs and a cervical stitch. The one thing in my favour was that I could at least get pregnant quite quickly, normally with three cycles. That's not the case this time though. We were given the go ahead to start trying in December but we weren't brave enough until January. Nothing so far. Getting to the testing day each month feels like forever and then there's the crushing disappointment. I've just had the basic tests with the nhs and have only ever got a referal through once for the miscarriage clinic and I was six weeks pregnant then so they wouldn't see me. I've just joined a private healthcare scheme in the hope they can find out what's going wrong. My last baby was tested and as I figured there was nothing wrong with her. My cervix just opened up before she was ready. I'm really scared about next time and even more scared that whatever's happening in there now means there won't be a next time. Has anyone had trouble getting pregnant again after a miscarriage? Any experience of getting private testing done and what they do? I just want to get things moving.

[Bakingtins]

Hi MIW I'm so sorry to hear you've been through this crap so many times. When you say "basic tests" what have you had done so far?
I saw a RMC consultant privately which cost £200, then she gave us a list of tests, most of which the GP was able to run for us. Nothing found in our case and in the middle of another MMC (4th) so now considering travelling for testing for NK cells. Dr Quenby who was mentioned upthread charges £360 for an appointment, scan and uterine biopsy.
It took me a long time (12 cycles) to get pregnant when we started trying for DC3 but I've been pregnant 3 times in the last 9 months so not long subsequently. I think sometimes it's just one of those things and doesn't necessarily mean there is a problem conceiving, but can understand your anxiety about it. It is very hard going through that cycle every month knowing that even when you get a BFP your troubles are far from over. Nice thread on the conception board for TTC after MC, but most of them only had single MC. Lovely bunch though. I don't know what I would have done the last 9 months without mumsnet, it is keeping me nearly sane.

[donttrythisathome]

So sorry to hear about your experiences amuminwaiting.
i'm surprised you are not being seen by the recurring miscarriage clinic.

it took me 2 cycles after first mc, and maybe 4 after the second one. Why do you think there might not be a next time- I hope you get the treatment you deserve.

[PicardyThird]

tea - no issues (apart from placenta praevia with dc2 mid-pregnancy, which caused a couple of bleeds but then resolved itself by third trimester), went to 38 and 41 weeks respectively, all fine. Loved being pg It's a mystery. Waiting for genetics results on this baby, which might tell us more. Haven't had testing for the NK/immune stuff, as my drs felt the clotting was the issue for me and gynae is not suggesting further testing beyond the genetics atm.

MuminWaiting - I'm so sorry, how heartbreaking for you I would push again for referral to rmc clinic.

[squizita]

MIW I agree with the others - push for more tests! My local EPU told me/my my GP to organise RMC clinic tests the day they confirmed my 3rd. It is 100% expected and your right. If you need support perhaps your local PALS service could support your request?

Latest limbo report... Well, hopefully this is not gonna end in pain or anything too heavy but I started bleeding today. Brown, light flow. I had very low progesterone yesterday, so think that's finally allowing a bit of a bleed. Molar clinic and EPU docs both mentioned any 'reasonable' bleeding could be beneficial as it might get rid of a tiny scrap of retained materials or remind my body it's no longer pregnant, although not a period as still HCG present. Obvs I will go in if it becomes painful or heavy.

[Bakingtins]

Hi ladies, don't expect you are still up but thought I could probably ask here without offending or upsetting anyone.
I've started to bleed heavily again after a day of almost nothing. Am so desperate to collect something for testing that I've resorted to the sieve. In previous 3 miscarriages I've passed huge clots but nothing identifiable as sac/baby. I know baby was 5mm when scanned and since was just about alive on Sunday presume should not be too degenerated now. What am I looking for?

I am going to be so if I lose my chance to find out about this one.

[donttrythisathome]

Oh Bakingtins, I can't help I"m so sorry. I only had clots/strings in my first two mcs.
This sounds so grim. I think I would just save the lot. I hope tonight is not too hard for you.

[PicardyThird]

Oh, Baking.

I don't know whether this will still be any use to you, but I would save anything that's a large piece of something iyswim (I'm sorry, this is so awful to write about ). I did pass the baby this time and it was obvious that was what it was iyswim.

If it's any tiny comfort, my last-but-one ERPC didn't yield any 'material' that could be tested, even though I'd had no bleeding at all.

[Bakingtins]

Thanks ladies. I think I have got it - biggish piece of tissue rather than clot after which bleeding settled right down.
I feel relieved, honestly. Will take it to hospital tomorrow, I have an appt to be scanned so will see if that's it completed.
To the shops this morning to buy a new sieve.... Then back to bed, mum is caring for DS2 today.
I am so grateful for this thread. I have had fab support the last 9 months on TTC after MC and briefly preg after MC threads, but it's only here I feel I can say anything at all. it's the club nobody warns to be part of, and I never thought when this all started I'd be one of those women, but it turns out I am, and I'm so glad you've been there with me.
If there is any justice in the world at all not too sure about that one then you will all get your beautiful babies home, win the lottery and live forever.

[teaandchocolate]

Baking I'm so glad you seem to be doing ok and sorry I didn't respond to you sooner. Although not sure I'd be much help as my only natural mc was just like a period so I think my body had re absorbed most of the tissue. You've been so brave and so strong. Definitely stay in bed today, I'm glad you've got some help from your mum.

You're right it's a crap club to be part of but I agree that noone understands what this is really like except you lot. I only feel really safe on this thread too! I never thought Id be one of those poor people who keep losing babies and to be honest I still don't think I've really accepted it but it makes me feel much better to know I'm not alone.

Take care of yourself today - and forget about the seive for now!!

[squizita]

Baking glad to hear it has all settled down. As you mentioned, that 'tissue' may well be the remains of the sac. With my last MC (natural) I had seen a sac on a scan but it did not MC as a recognisable one, just bits of tissue. Take good care of yourself and take it easy - sadly as we all know it can be like "oh, bleeding and cramping has stopped, I'll just go to Tesco" and then feeling like rubbish and running for the loo. It sounds like your family are giving you a good chance to relax which is lovely of them, take advantage of it.

I am also bleeding. Not going in to EPU as have an appointment on Friday and with a bit of brown blood all they'd do would be to scan. Was told with bloods hovering at 300 it might well be a tiny dot of retained material which would 'flush out' so hoping very much that is the case right now. Still a bit paranoid when I get a twinge either side but they are the same twinges when there was deffo nothing there. Actually feel a bit rough in a MC-y way again, perhaps a drop in hormones? The life of a symptom spotter... one month TTC another wanting the MC over with.

We are a strange bunch and it is so good that this thread exists.

[teaandchocolate]

Sorry to moan but I'm having another total freak out and not sure what to do with myself. After feeling nausea since the weekend I don't feel sick at all anymore today. My boobs haven't been sore this whole time and I'm just convinced its over. Even though I've felt worried from the start I just feel like I can't cope with it all. How will I manage if I have another mc? I know people go through much worse than me and don't even have a child but I'm just feeling so scared today. Really need to work but can't stop crying!

[donttrythisathome]

Baking, that is "good" news, I am glad.
And yes I am so glad to have found this thread as I am feeling isolated in RL. I haven't told anyone except one friend and work, as I don't think it would help. My DH is doing everything around the house, as always tbh, but emotionally is no support.

Teas, my heart goes out to you. Can you leave work at all? I think this is one of the worst things you can go through, the emotional roller coaster is vicious.

Squiz, I know what you mean. Unbelievably I am thinking of starting to start checking for ovulation symptoms, 2 days after ERPC. I long to be one of the mythical women who conceive before they get their first period back.

[PicardyThird]

Oh, I just want to scoop all of you up and clasp you to my not at all ample bosom in a big hug. So much worry and sadness and undeserved suffering

Tea, if you can possibly, I think you need to allow yourself to let it out. These early weeks are so terrible with our experience behind you, iyswim.

Baking, take really good care of yourself today. Much love. Squiz, you too. Don't underestimate how hard this is on you.

[donttrythisathome]

Oh Picardy, that made me cry. I am very teary at the moment, aft feeling so great. Off to get a haircut now, hope I don't break down there. The hairdresser is v chatty and perky, no kids, wouldn't understand.

[teaandchocolate]

Thank you. Donttry I work from home so its actually fine for me to work and cry (& manically google) at the same time.

Picardy thank you! This part is so hard as I just desperately want to know the outcome but despite the fact I can't imagine it being ok, I can't seem to cope with the thought of another mc and having to try again. I'm sure hormones make the crying worse but I do need to pull myself together as I have to pick DD up from preschool in an hour and don't want to turn up with a bright red snotty face.

There's absolutely nothing I can do except wait for next weeks scan. But its killing me. There's no point in having one earlier in case its inconclusive and anyway we are going away this weekend with DHs family and I don't want bad news before then. As it is I will just take loads of pads with in case I start to mc when I'm there...

Thank you all for listening. I was going to phone someone for a chat as was so beside myself but there's actually noone who could make me feel any better.

[Daisybell1]

I'm sorry, I'm on my phone so I can't name-check but I wanted to give you all a massive hug and lend my support to those who need it.

Handholding for Tea, Baking, Squizita especially.

I've got my follow us consultants meeting tomorrow, NICE guidelines are highlighted, ballsy side of brain is engaged! Can I demand a referral to a specialist clinic or will they be offended by that????

[squizita]

Daisy My top tip in being lovely and pushy... like Mrs Doyle in Father Ted. "Oh but Doctor, I understand I fit the criteria, now you see this Professor Regan I've read up on her and she's local isn't she? Are we technicallly in the area? Yes we are? Oh well that's good now my GP said she would sign if you would sign the form too... will you now? You will you will you will go on..." My doc was very lovely about it all and happy to refer me.

Picardy thanks... on the topic of ample bosoms my bosom feels less ample today... I hope this means the hormones are falling.

Don't hope you have a nice haircut. Take care. Who knows you might be one of those who conceive quickly indeed!

Tea ugh, scary for you. Hormones are fluctuating things though, as are our reactions to them. Hydration, food etc' can make symptoms change so try not to worry "she says" knowing that it's impossible not to. We are programmed to spot the negatives... but I know several folk with fluctuating symptoms who were just fine. We are looking at it through the poop-tinted-glasses of MCers. If only there were a way to swap them for rose-tinted ones!!

[Daisybell1]

Thanks Squizita, unfortunately we're in the frozen north so are miles from London but I've heard someone in Liverpool being mentioned on here.

I'm just scared it's going to be the horrible consultant who's going to tell me I'm wasting everyone's time

[Bakingtins]

It's Prof Quenby who is in Liverpool, Daisy she's listed as working at Liverpool, Warwick University and Coventry.

[squizita]

daisy I don't think a reputable consultant, NHS or private, would ever be so horrible so don't worry! All the medical staff dedicated to MC I have met have at worst been a bit too 'businesslike' (i.e. they deal with scared women 24/7 and very helpful but maybe don't appreciate how scary it is to each woman) and at best absolutely lovely and kind.

[Daisybell1]

Professor Quenby, thank you, name noted, although she sounds like someone out of Harry Potter!

There is one horrible consultant here, really rude, dismissive and seems to regard everyone as completely pointless...

[orangebowl]

Daisy just to add- I went to dr farquharson at Liverpool womens and he is fantastic.. Four miscarriages and then saw him.. Just hit 29 weeks pregnant today. Xx

[squizita]

I thought Quenby was my favourite name of all the consultants, but Farquharson is even better!! Scientists just aught to have scientist names!!