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

[UnicornsandRainbows1]

Shiny new thread! :)

Hi everyone, sorry this dropped off my watch list and have been very anxious generally- this is not the right place for my anxieties!

Congratulations to Miami and Anne, I really hope this is your turn. You both have been through so much.

Have a morning of bloods and scans tomorrow so will catch up properly then. 16+4 now. Still somewhat in denial, still haven’t told many people (although my stomach is massive so I’m sure they suspect) and still can’t imagine a baby at the end of all this. But hopeful.

@Miami81 i took a test two weeks prior to the scan I had at the hospital so when I took it I was 3+ weeks so adding on the 2 for ovulation and comparing to my dtd dates it would have been 7 week around the date they scanned me so straight away felt like a bad omen not being as far on. They scanned to see what was going on as I was bleeding heavy on and off for 2 weeks but no clots etc.

The second set of blood I had taken two days after the first set and the vaginal ultrasound she said my hcg was at 4950 and my
Progesterone was only at 5 so she said based on these bloods I wasn't carrying a viable pregnancy as the progesterone was too low?

With our little girl in January I had to have medical intervention so the thought of going through all of that again is just horrific 😩 I was just wondering how long I should be waiting for a negative if I can hold out on that front as deep down I think I know I'm heading that route arent I 😞.

@OntoTheThird if you have retained products though it is best to get that dealt with sooner rather then later, in case if infections and bleeding etc. Blood tests At least should give you some idea of what is happening.
I did my second test this morning, it's still positive, gonna not poas now for a few days. Still not even at period due date yet so really need to calm the f down.

I had to delurk again to say a tentative congratulations to you Miami. Everything is crossed as tightly as I possibly can.

@OntoTheThird as Miami says I'd be worried about retained products if you haven't passed any large clots. EGU shouldn't have discharged you until everything had resolved so you should go back to them and ask for another scan and bloods. You may need medical or surgical management to help things on their way? I'm sorry you're in this situation, its hard to heal and move one emotionally when things are still having an effect physically. Also regarding the RMC referral it took me 4 months just from referral to getting my first appointment where they would just take a load of bloods, then its another 10 weeks for results and discussing further tests so just to warn you it can be a slow process so it may be worth getting the ball rolling at least. Plus if like me you get pregnant before you reach the first appointment you can be seen through them with extra reassurance scans plus high dose folic acid and cyclogest to help support the pregnancy. Nothing lost at least?

@Miami81 I'm loving the positive thinking and positive pee stick!

@AnneLovesGilbert wow you have a lot of meds to juggle, it'll be so worth it eventually!

@paranormalbouquet I know exactly how you feel, after mmc1 we didn't tell hardly anyone until close to 20 weeks, it still felt so fragile and not quite real.

Apologies for all my whinging ladies, I'm blaming the nausea for me being grumpy. I didn't sleep well after yesterday but am at work today so at least distracted from dwelling on it. I saw someone wanting to jump off a bridge over the motorway which was just awful, then got stranded with DS when DH's car threw a hissy fit and locked itself with the keys inside so I had a 2 hour wait for roadside recovery in a car park with a toddler. DH was on a flight so couldn't come rescue us and as DS needs a car seat which was locked in my car nobody could come collect him, we had no food or water or cash as it was all locked in the car, and then my constipated child started straining and actually (sods law) produced something when I had no nappies or wipes that I could access. Definitely felt like a "world is out to get me" type of day.

Hi Girls

So sorry for the extremely late reply, things have been manic here recently as moved house on Friday so slowly working through all of the boxes while my puppy tries to play with it all.
I went to a genetic appointment today, they've told me that IVF with PGD waiting list is about a year! I'm gutted....I don't know whether to keep trying and risk more miscarriages or to wait for that....Just feels so unfair sometimes.

@Miami81 Ahhhh congratulations!! I've been a long term lurker on these groups and think I was even in the background of a joint pregnancy group on here too that you were in. Same with you @AnnelovesGilbert.
It makes me sound so stalkerish but I don't know how I would have got through the last 15 months or so without reading all of your posts and the positive things you all say.
I've found Coventry really good, professor quenby is so knowledgeable and friendly. It was boards like this that I first found out about her and was able to get referred there.

It still surprises me that there aren't many groups out there where you can physically meet others like us going through recurrent miscarriages. I've been tempted to set something up in the Midlands but haven't had chance to look into it yet.

Hope you're all having a good day xx

Think I have mostly caught up!

@OntoTheThird I think you definitely need a review and a scan in EPU. I had quite a bad infection after MMC earlier this year after bleeding for several weeks and no resolution. My hCG levels were high too (started over 150000) and I didn't have a negative pregnancy test until 6 weeks after MMC diagnosed, 2 weeks after ERPC.

@Miami81 it's pretty much impossible to calm down when you've had several losses, just try and be kind to yourself.

@Labmum I think it's fine to moan.I'm delighted to be pregnant but find pregnancy so hard. Physically and emotionally. I wish we could just have a fast-forward button and stop with a baby in arms!!

I had my GTT this morning, waiting on results. Followed by preterm clinic which went well. Placenta is nice and high and anterior, well away from adhesions so hopefully will continue to work well. Cervix is closed and stitch is in the right place. And baby is flying around and looking happy.

@Munchies89 it seems extremely unfair that in a situation like yours PGD has such a long waiting list. Could the genetic clinic give you any indication of the chances of the genetic abnormality in each pregnancy?

@Paranormalbouquet Yes it's 50/50 every pregnancy. However it could be every egg that is affected now or even none but they won't know unless I have PGD.
Its annoying as my husband and I have always said we would not terminate the pregnancy if it was to be affected as we know the syndrome well and the baby would be very loved but unfortunately it's being taken out of our hands so far.
Hope your not waiting too long to get your results. Glad baby is doing well xx

@Munchies89 that's really frustrating it's such a long wait. I might have missed something but how did you come to get genetic testing on MC1 and 3? Especially the first one I thought normal protocol was the old "it's really common" spiel with no investigations. My third miscarriage didn't even get genetic testing, only histology which is effectively pointless.

Hope the house move went smoothly and you're all settled.

Sorry for my ignorance, I don't understand what PGD is. Can someone explain please?

Nice to see those who were previously here popping in. Glad things are going well for you ladies.

@LabMum I was already under genetics due to my brother having downs syndrome so I decided to get tested for it before we planned to start trying and it was discovered I carried the gene. So luckily my 1st was able to be tested as it was mmc and so was the 4th. However the 2 between were natural miscarriages so I didn't get chance or even think about getting them tested. You are right though, normally they wouldn't test until after 3rd.

@Hopefulforourrainbow PGD is preimplantation genetic diagnosis so with ivf they would test my eggs for specific genetic conditions and only put back any healthy ones. Its a specialist type of IVF....Hope that makes sense xx

Thank you! I didn't realise they could that. It's amazing really. Pity the waiting list is so long. Could you look in to going private?

Oh I see @Munchies89. It's good you were already under the genetics team so at least you have a clearer picture. I work in science so I find the genetics really interesting. Is it common for DS to cause miscarriage? I was under the impression it was generally a non-lethal condition? Unless it depends on the severity of any heart anomalies which I know can be common in DS? Or could it be something else?
Sorry, feel free to ignore me if you'd rather not go into details or if it upsets you.

Unfortunately not right now as we've literally just bought a bigger house so no savings left. I was under the impression that the waiting list was only a couple of months before today's appointment.

Its hard but got to try to stay positive and hope that things work out before then or hope that the waiting list is suddenly reduced lots as everyone on it has fell pregnant x

Sorry @LabMum I literally just missed your post. No I've been told it's quite a high percentage that unfortunately miscarry.
My question today was that if I was to get past 12 weeks with a baby that had downs, how likely would I still be to miscarry...but unfortunately they weren't able to answer that for me. They said they would speak to the lab people regarding downs and miscarriages but didn't think they'd have an answer for me. But again you are right, they do tend to have heart problems. We are so lucky with my brother as he doesn't have any of those extra medical needs.
Thank you for taking an interest in all of this. I haven't got any friends/family that have miscarried x

@Munchie89 that's really interesting. I'm like you and have lots of questions and get frustrated at the "we don't knows" then I start thinking of research that could be done that would help find out then get frustrated again at the lack of money in miscarriage research.
Have you told many people about your miscarriages? After having DS I told people about my previous miscarriage, then a couple of years later I've had a few friends go through it and because I'd been open about it they knew they could talk to me and I would "get it"! So although you may not know anyone now, given time you will which is rubbish but unfortunately given the statistics pretty likely.

Yes, my husband and I have been very open about the miscarriages and have kept friends and family in the loop about options we have etc. Its just been difficult at times when we have so many people around us but that lonely feeling of none of them fully understanding what we are going through.

We had some counselling sessions at the RMC a couple of months ago and 1 of the things I kept talking about was the fact that in the future some of my friends/family will possibly also experience a miscarriage due to statistics and I find that thought absolutely heart breaking. We are just approaching our 30s and friends all around us are starting families so I feel this heartache is going to be immanent and even though it's not my miscarriage, the feeling is just so close to home and raw I find it really hard to think about but it's also at the front of my mind.....I'm not sure if this is even making any sense as I'm writing it but just wondered if anyone else has this same feeling x

@Labmum I pushed for genetic testing with my last miscarriage and it showed normal chromosomes. Which fit in with the theory of adhesions causing the losses. I think all specimens are sent for histology to rule out molar pregnancy.

@Munchies89 it’s so hard to know what to do in your situation. I don’t think there is a right answer either.

@Paranormalbouquet I wish I'd pushed for genetic testing but I guess that's the benefit of hindsight

My crappy week has gotten even worse, I've caught a sickness bug. Hubby is still away. Urgh! And with all this bad luck I'm obviously panicking about what else is going to go wrong.

There seems to be a lot of bugs doing the rounds just now. I've got one now too. A day for Netflix I think! Hope you're feeling better soon.
I asked about testing when I had mmc but as it was my 1st they wouldn't do anything. It's coming up for a year since that 😭 really thought we would have had a baby by now. Life really sucks sometimes!

They weren’t keen on testing my third, I had to wave guidelines at them. Annoyed me as it’s clearly indicated.

It's really frustrating how unsupportive early pregnancy units and rmc are.

Glad you've felt able to join that chat @Munchies89 So sorry for everything you've gone through and for the limbo you find yourselves in now.

Bad news on the bugs going around too, when's DH back to take up the reins @Labmum He owes you a lot of a lie ins! Feel better and also to @Hopefulforourrainbo and I know what you mean about time flying. My first mmc would have been 1 in May. Instead of her being here I've lost 3 more since. I mean seriously, what the fuck?

With my last pregnancy I didn't have a single minute of nausea and I'd forgotten what it's like. Woke up feeling fine and it hit me about 10, raging hunger followed by proper seasick type feeling of a rolling stomach, a clammy face and neck and lots of swallowing, dizziness and it's getting worse Off to a friend's for takeaway for his birthday tonight, will plain boiled rice give me away?

@AnneLovesGilbert what I wouldn't give for a wave of nausea. I hope you are ok though. Plain rice sounds lovely.
I have no symptoms at all, but only officially 4+1 today so I think I need to calm down. My resting heart rate was really low last night, sent me into a panic. Then i temped this morning and it was lower (although still way above baseline) so I am panicking about that too.
But I have just had very stern words with myself. If this one isn't meant to be, no amount of me lying there thinking about it and panicking is going to change that. It will just be what it will be.