TTC after recurrent miscarriage thread 2 - we're not giving up

[UnicornsandRainbows1]

Shiny new thread! :)

Hi ladies,
Scan was ok but mc hadn't completed the sac was still present and was full of liquid but they couldn't see a foetus so assumed must have passed. Today I passed something not very pleasant and pretty solid, about 2 inches, I don't know if the foetus could have been missed in the scan, i wouldn't think so? So I'm assuming it is done now and bleeding will stop soon. I went back to work today (this happened in office loo Ffs) and wish I hadn't but it probably helped move things along rather than being on the sofa all day.

They gave us a counselling session, which was helpful. They confirmed referral for tests but that could be 6 weeks wait for hcg levels to come down and I'm not sure if we should wait for that or not. I'm not emotionally ready so it's not a decision for now and need to see what happens to my cycle. Ive booked in with gp for Friday pm to catch up on everything and make sure the referral is made.

Otherwise we're ok. We're both very practical and forward focussed so as long as I let myself cry it out when I need to, then we'll be fine.

There is something else I'd like to share but it's sensitive. I had a termination when I was 19....20 years ago. I met hubby at 27 and I never told him. I had moments of self hate during these losses, but some how, from no-where, I plucked up the courage to tell him amidst this mess. He was so understanding, non judgemental, felt sad for me that I'd kept it a secret but he understands why. I don't feel a weight has lifted as I was always comfortable with my decisions, but I do feel stronger in being honest with him and having his unquestionable support. I feel stronger in our relationship too even after 12 years together. Especially going through any tests I can't lie my way through it, it wouldn't be right or fair to him to exclude him in that way.

So overall today I'm 5/10 in terms of coming to terms with things. I'll get that number up each week :)

Thanks for listening and glad everyone is doing well xx

@Yukka I think when there’s a lot of fluid it’s easy to miss things. I passed sac at work last time too. After waiting at home for a week for bleeding to start I went in one day and had a sudden heavy bleed. Your EPU sound very good, I’m glad you’ve had all the appropriate referrals made.

I’m glad you felt able to talk to your DH about your termination. I hope it’s not been playing on your mind for a long time. I don’t know what the right thing is re trying straight away or not. I think that’s really up to you and DH and how you both feel. There’s no reason you can’t have some simple things like thyroid checked now though.

Don’t worry if the number goes down a bit before going up! With my MMC I was totally focused on getting through the physical side of things. Then afterwards it all hit me and I cried for 2 days straight.

Thanks @paranormal I did wake up crying at 5am yesterday. I felt stable enough to go to work today but it wouldn't take much to wobble. No one at work new I was pregnant and I'd rather keep it that way xx

I was the same. Knew they’d all be watching for a bump over the next few months. Told my immediate supervisor as had to go over and back for so many appointments, but luckily as I’m in a fairly flexible position currently I could work around it.

So glad all is well para, what do the cervix clinic check? And when does the stitch go in? How big a risk is there to you? It must be really nerve wracking. Hope they're remembering you're a person too and how you feel matters. We're not just wombs on legs!

How are you doing today yukka? I've had bfns within 3 weeks after mcs at 12 and 11 weeks. I couldn't bring myself to test for at least a week then just did one every few days watching them get lighter. It's so good you've been able to talk to your husband, he sounds like one of the good ones and I'm glad you have good support. God it makes a difference.

I chased my RMC this morning as still no appointment through. The clinic is next weds and I couldn't get there as all all sorts going on, turns out they hadn't made an appointment yet and the consultant's not there next week anyway, so booked in to see them on the 6th. And our test results are through. Baby was perfect

Glad I asked as we can process if before we see him and won't go in with multiple possible results to consider - chromosomal and what kind etc etc. So we make perfect babies and I can't keep them alive. What the fuck?

It's the worst possible outcome I think. I've had this thought in the back of my head that maybe it wasn't meant to be that time, that from the moment it was conceived there might have been something wrong with it and there was nothing I could do to save it and then the loss wouldn't have been quite so bad. All I'm left with now is that actually that baby WAS meant to be and if it had been in anyone else then it would be arriving fully cooked in November.

I'm completely alright, not heartbroken or anything, but we're both just a bit gutted. I forgot to ask what flavour it was but we're both thinking a boy. Don't know why.

Had anymore thoughts on going private miami? How are you feeling this week? Rage is an amazingly invigorating feeling isn't it, gives you focus and clarity, but the come down after can be exhausting. Hugs to you x

I’m so sorry to hear about the genetic analysis. We had very little tissue to work with and what they found was chromosomally normal female but couldn’t be sure it wasn’t just my tissue they tested. I’m fairly sure my uterus was the problem though. I hope the clinic have a useful plan for you when you see them.

Anne my DD was an emergency c-section delivery, I was fully dilated. Because at that point your cervix is so high it’s quite easily damaged, and at the time they accidentally tore it on one side. As a result it’s very scarred and thin. Was noted to be abnormal after routine smear (just after second miscarriage). Scarring in my lower uterus is probably what’s caused the miscarriages.

Having a short/damaged cervix increases the risk of having a second trimester loss or a very premature baby. In my case there’s about a 40% chance of that happening. A stitch can help reduce that but there’s 2 types of stitch- one placed vaginally which might work but will be hard to place (and very low risk to me) or an abdominal which is a big surgery, more likely to work but higher risk to me and slightly higher risk of loss at the time of surgery. If it failed would mean needing a c-section for a second trimester loss which would obviously be very traumatic.

Usually people are offered a vaginal stitch and if it fails and abdominal next time but as my damage is very severe they will leave it up to me. One specialist thinks I should go straight for abdominal, the other thinks it’s overkill.

Personally I think a mid trimester loss would kill me and obviously I would hate to have a preventable premature delivery so inclined towards abdominal even though I accept it may be overkill.

Sorry for the lecture on short cervix issues, I’ve become somewhat of an expert!

I've been feeling the same way Anne. Especially now my bloods have come back positive to lupus anticoagulant antibodies. Can't help but think the 3 babies we've lost were probably healthy and it's all down to me. I know it's totally outwith my control but can't help but feel like that. It's all so hard and doesn't help that all of my close friends are pregnant so can't even confide in them about how I'm feeling. Think I'm just having a low day today. Boobs have been really sore past few days. Only have sore boobs when pregnant and tested negative yesterday. On what I think is CD 34 today. I think my hormones are just all over the place.
Glad to hear things are still going well paranormal and glad to hear you've managed to confide in your husband yukka. Sounds like we've all got supportive husbands.

Hi ladies
Wow. So in a bunch of people with recurrent mc we are actually the full set aren't we?! As far as I can see recurrent mc doesn't seem to correlate with bad eggs until much older (>40) or if there are one of those balanced translocations thingies.
@Paranormalbouquet for my two cents worth I feel that I would be going for the overkill approach. I don't think that some doctors are sensitive enough to the fact that you (or we) are losing completely healthy babies here and that the fucking agony of that is very detrimental to mental health. I mean do they actually think that a mid-step approach that still leaves you open to a preemie or mid loss is ok? Are they insane? These are real babies not toys. (Sorry I realise that reading that back that is probably my own personal rage thing manifesting).
I would consider getting a 3rd opinion and obviously needs to be discussed with your DP about potential impact to your health/ family. And just remember as Anne says, you have to be comfortable and trust the situation.
@AnneLovesGilbert I am so sorry. When dd died I didn't know whether I was wishing for a scenario where she wasn't ok (chromosomes) or where she was perfect. She was perfect, so I have pretty much assumed that at least 1 of the miscarriages were perfect too and that melts my head.
It turns out that it was really important to me that she was perfect because I just couldn't bear to think of anyone saying things like 'maybe for the best, etc'.
I hate this whole fucking situation, how has it come to this? How come they know so little. At least you have a few weeks to sort your heads out a small bit - and also figure out where you want to go from here. As far as I remember all of yours have been different dates? I suppose you just need to hear what they have to say - shit that they hadn't made the appointment for you.
I have booked a 3d full uterus scan at the IVF place in Glasgow, I emailed them yesterday and laid it on the line, I need to just fucking know now, I can't have any more of this dicking around. Their medical director called me back and said that their 3d machine should be up to the job, we shall see.
Have also emailed loads of places in London for price lists for the resection if that's what we need.
Keeponrunning kindly gave me her consultants details as well, so I am pursuing that too as she is closer to here.
So now I am full tilt. My f'ing birthday is in 6 weeks and I have to know where we are at by then. I can feel my brain cracking under the pressure of all this. PTSD for recurrent loss anybody - yep, I could write the guidebook at this stage, they don't seem to be doing anything to help alleviate the trauma to any of us though.

@Yukka it sounds like you've had good support from the EPU which is great. Mine was ok and got me the referral but its a long wait so its great if your's is only 6 weeks. I've tested negative a couple of weeks after all my miscarriages. Keep pestering EPU if its still positive after 3 weeks in case of anything being retained. People at work knew after the first one as I honestly just couldn't face returning to work and people asking me how I was and why I'd been off. The first one hit me like a truck as we'd gone along to our 12 week scan expecting to see our baby having had no pain or bleeding to suggest anything was wrong, I was totally broken for a long time after that. The two since I've had my Son I told my boss but no one else at work knows.

@Paranormalbouquet I think I'd be in the overkill camp too, I'd not want to take the risk of a late loss or preemie baby. The guilt if something happened of knowing that I could have done something differently that might have had a better outcome would eat me up. Its good that they're giving you the choice though. I think there are some women on a "short cervix" thread on the antenatal club pages who may be able to give you some more views? I took part in a study looking at cervical length whilst pregnant with DS, I'd had a procedure after a dodgy smear that meant I was classed as high risk but thankfully all was fine and the extra scans in the study meant it put my mind at ease.

@AnneLovesGilbert and @Hopefulforourrainbow please try not to dwell on that. Its not any of our faults, if anything its our stupid health system that says we have to lose 3 babies before they'll even think about looking into it. It's ridiculous and doesn't take into account the emotional impact of all this! I'm sorry about the genetic results raising so many questions for you both. Annoyingly I took samples in to the EPU to be sent for testing and they only did basic histology rather than gene profiling. Its frustrating as I now feel like it could have provided answers to the RMC. Instead I may have to go through another loss just to be able to get some answers.

@Miami81 I'm glad you're exploring all your options and going in all guns blazing. Using that rage to get things moving is a good way of channelling it. Fingers crossed the 3D scan gives nice clear results and you can get sorted. The strain of all this must be so hard on you, I really hope you can find something to stop your head from melting with it all, either counselling or a trip away for your birthday maybe?

Hi All, I'm quite good today considering. Feeling motivated, determined and healthy. Bleeding has nearly stopped. Going to GP tomorrow to start putting pressure on the testing referrals.

My HCG bloods on sunday at a+e were only 2300 so i'll give it a week and do a test. I hadn't thought about doing one actually, but you're right I should.

Been reading your stories, I can feel the anger and frustration and I totally feel the same. I am only grateful that my first to MC's were both at 5 weeks and they are classing them as MC's and not 'chemical pregnancies'. How sad it is to feel grateful in this situation. It is absolutely disgusting that we have to wait for 3 losses, since when was that defined as acceptable loss, and by who? I would say some moron in a lab coat, but its worse, its some idiot politician deciding on whats important and whats not.

My midwife/counsellor at the EPU though mentioned the new trials and new evidence that had been found, she didn't go into details but naturally I have googled. Its around Stem Cells in the womb. I remember reading an article at christmas where a GP was saying the most fundamental likely cause of recurrent MC must lie in the womb lining and ability to support pregnancy and this is where the investment should go. Have any of you read up on this? Is it old news? Looks like they have found a clinical link in the lack of stem cell production in the uterus, and they have done a human trial of medication this year in the UK, pending results to be published. I guess I was a little excited as though this isn't an answer for everyone, if they are at the point of human trials, available treatment might not be too far away. I think it was an existing form of diabetes medication that was being used that had shown to have the right effect in stem cell growth . . . .? @Anne it just sounded more plausible given your test results, perfect baby, dodgy womb?

Anyway let me know if you've read it and think its BS.

Given the number and frequency of women effected, there must be a very common most likely cause for most women, followed by the less common causes that are less frequently found and more specific to the couple.

Who knows. If I get too involved in this stuff it will take over my entire living being and right now I just need to be able to cope and move forward. And drink wine. I'm going to drink a lot of wine this weekend.

How’s everyone doing this weekend?

Good thanks. A weekend off so had a nice long lie, watched royal wedding, spent some time in garden, now catching up on greys anatomy with a glass of prosecco. Oh and AF started today. Seems different to usual but at least it's started. Hope you're all having a lovely weekend

I'm a bit fed up as had a recent baby bomb.

Watched the royal wedding whilst stripping wallpaper......my life is so glamorous!

Hope everyone's been enjoying the sunshine.

@Labmum I'm so sorry. They never get any easier do they. We're here, we get it. Have a bit of a scream at the unfairness of the world.
We had a nice day, just relaxed, went and got loads of fish for the bbq, read my book, gardened, cooked. All good really.
Ate too much cake, but oh well.
My main consultant rang me whilst we were out and about. You know what she is lovely. She's the obstetric consultant so will be in charge of all our care if we get pregnant again, I left her a message during the week. Anyway she called cos she had just received the report from the gynae guy from Tuesday, I could tell she was totally pissed off, apparently she had suggested to him when the MRI came back (in March) that I needed a laparoscopy at the same time as the hysteroscopy and he said no that he would be able to tell from the hysteroscopy what is going on. So anyway long story short,
I am seeing her on Thursday for a chat. Glad that she's on side. He's a twat!!

@miami good to get your consultant is on it might you need to go for the laparoscopy then? Guesss you'll find out Tuesday.

I've been up and down. Bleeding has stopped which is good. Now I'm in head wreck of hormones and being cranky. Had two glasses of wine on Friday and didn't help so gonna stay off the booze a little longer or in general.

BBQ this afternoon with close friends that know what's happened so that will help feel a little normal I hope.

Had the 3d uterine scan today. They reckon it looks like a septate uterus (the one that is operable). So we shall see what my consultant says on Thursday.

@Miami81 That's good news that it's the operable one.

That sentence annoys my because it's not actually "good news", it's crappy that that's the case (and that any of us are even on this thread in the first place) but at least it may provide answers and there's something that can be done about it.

Fingers crossed for some swift action from the consultant on Thursday.

Thanks @Labmum
The doc at the 3d scan place then basically told me not to have it resected because it could cause a uterine rupture when pregnant again!!! Helpful/not helpful. He's an ivf doc so I suppose in his eyes I should just keep getting pregnant because I can........
my head is melted. Must try to sleep now.

@Miami81 Oh wow! No wonder your head is melted. Hopefully the way ahead will be clearer after your appointment on Thursday.....until then wine!

@Miami81 it’s so stressful getting so many opinions isn’t it. I’m glad the scan showed something definitive though, it’s a step towards the correct treatment. I’d be inclined to listen to the obstetricians- they deal with the births and deliveries. If rupture is a concern they will recommend c-section at 36-37 weeks which is infinitely better than losing another baby.

Once I have my stitch I’m signed up for an early term section for the same reason. I’m not at all worried about missing out on a normal delivery, I just want a healthy baby in my arms at the end of it.

@Paranormalbouquet
Yes indeed - it's all about weighing up risks vs benefits.
I have sent a few emails out to private clinics in London. One of the responses is mind boggling. So I have a relatively high bmi (bmi of 36 at the moment) and I am working really hard on that, my surgeon here has said that he would like it to be

Well done on weight loss. Is there a suggestion that your cervix was a problem? Did you have a painless PPROM or uterine infection causing stillbirth? (It's uncommon to have uterine infection unless cervix is open at least partially). I'm a bit of an expert on cervical issues now!

I certainly wouldn't consider the London place based on that reply anyway. They clearly didn't read your letter! Isn't the surgery hysteroscopic? That's pretty low risk even with a high BMI. Mine is sitting at 33 at the moment. On the upside I haven't gained weight yet this pregnancy, on the downside I'll need to keep an eye on it all the way through.

How Are you doing @paranormal? Did you reach 12w point yet I can't recall x

I’m 9 weeks now. Next scan is at 10+3. Just hoping to get to 12 weeks and my cervical stitch.

@Paranormalbouquet I have everything crossed for you lovely. The waiting from scan to scan is really hard, we are all here for you.
Yeah it's a hysteroscopy although with guidance from laparoscopy to make sure they don't perforate womb. So not without risks. Will just see what my guy has to say.
No nothing at all about cervix. All blood supply issues for me. Cervix was good with no signs at all of any infection.