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

[UnicornsandRainbows1]

Shiny new thread! :)

Funnily enough the one thing proven to help is frequent scanning. Which makes no sense scientifically but has actually got an evidence base. I pushed for scans this time and got them at 6, 8, 9, 11 (actually had 2 scans at 11 weeks, one after surgery to check baby had survived) and 12 weeks (some were to evaluate cervix pre op). I also had frequent bleeding so went into each scan expecting bad news but this one seemed hardy!

That's interesting paranormal. Consultant at epu has offered to scan me as much as I want next time after such a shitty experience there. I might take her up on it!

I’m now on 4 x 400mg progesterone a day. And he wasn’t happy about me putting them up my arse so I’m debating going back to leaking white stuff day and night and living with pads. And I’ve read the same stuff about it not doing anything

He showed me an area on my scans and said about the lining maybe coming away but promised the prog would magically stick it all back to my uterus wall. I’m super unmedical so it’s all Greek to me but at this point I’ll try most things.

Had a bad nights sleep, I’m so wired from work and the highs of yesterday I crashed hard then woke before 5. Today has been manic and I’m now exhausted and hyper and trying to marshal some energy for a long weekend with my DSC which won’t really be time off at all...

Potted history for hopeful.

Early natural mc August 2016.
Mmc 12 weeks November 2016, failed medical management then mva. Don’t recommend either!
Referred to RMC, nothing found.
Natural 5 week mc February 2017.
Ttc for 13 months and nothing happened.
Mmc after two scans with good heartbeat got to 9 weeks found our at 11weeks, ERPC April 2018. Did 2500 fragmin and 200mg cyclogest (progesterone).
Full bloods again still nothing found.
Chemical May 2018.
Currently 7+6, two good scans, ever changing meds but this week I’m on 150 aspirin, 15 prednisolone (steroid), 5000 fragmin and 1600 cyclogest.

I got a referral through the RMC after first mmc as I’d also had an unplanned early mc about 10 years ago with my ex which I’d put in my notes.

So this is my sixth pregnancy.

It’s all been a total fucking ball ache. I’ve berg lucky to catch quicklyish either side of my year of nothing. But not having a diagnosis is a headfuck when I’m sure it’s the placenta crapping out around 9 weeks so I’m highly dubious about next planned scan on the 15th. He’s treating me as if I have a clotting issue which I definitely don’t.

I do feel we’ve been very lucky with the care we’ve had. It’s all a load of made up trial and error but at least they’re trying to help and we’ve always been treated like people with feelings which is a lot more than can be said for some of the attitudes I’ve read about people facing on here and other threads.

Treating recurrent loss seems like the Wild West. It’s madness there’s not a more coordinated approach across the U.K.

My head is forever screeching things like massive amounts of progesterone are totally pointless. But what can I do but get on board with it as a maybe when nothing seems to have worked and I want a bloody baby. If it does happen no one will know if it was any, all or none of the drugs that did it. I think I’m okay with that though. Having always wanted handfuls of kids as I’m from a big family I will embrace one if it ever shows up. Or that’s what I tell myself now

I said it to DH the other day and he smiled dubiously. It’s taking a toll on him too, inevitably. He thought his family was complete until he shacked up with me and fancied another. Oh how we laugh...

Wow @AnnelovesGilbert that is a lot of progesterone!! I'm only on 200mg twice a day.

@LabMum I think I was due yesterday. I'm about 11 DPO. Did a test after I posted earlier even though my urine was very dilute and I had only held it for 2 hours....think there is possibly a squinter though but nothing to get my hopes up over as will probably start bleeding tomorrow.....so sorry if that sounds negative and selfish but I'm sure you'll all agreed that going through this again and again makes us feel this way x

Of course it does munch

But you never know! Here for you.

Thank you 😀 I'll test again on Sunday if AF hasn't started and update you x

Missed loads of messages! lab I’m over the moon for you, wonderful news

Thank you for all the nice messages. I find the good news bump from a scan lasts less than 24 hours but that’s just because it’s still so early and I’m just so god damn tired.

It means more than I can say having you lot in my corner, as I am for ALL of you.

Welcome to our gang june, hope you find it a helpful supportive place to share anything and everything. It’s become an odd hybrid of many types of issues for women at various stages of the process so I hope it’s still working for everyone. I don’t know where I’d be without you.

Thank you miami, you’re my rock. Can you believe we’re at it again at the same time?

para also wanted to say that as a complete medical idiot I do appreciate your facts and wisdom. It doesn’t half help those of us who are basically clueless navigate what is often confusing advice. Thank you.

@Hopefulforourrainbow I'm in Scotland too. Managed to get them to give me the progesterone, but that's because I was on the trial for DD's pregnancy and given that I got to 27 wks with her i wanted to give the same chance. Basically after a stillbirth they will do anything I want.
@Paranormalbouquet I had scans at 6+2, 7+2, 9+2 and 12 wks with dd, I had read that about the scans and I do wonder if it helped me get past the first 12 wks.
Also progesterone is supposed to help a bit with cervical issues and help guard against pprom, both of which I am at risk of because of the uterine abnormality I have.

@AnneLovesGilbert I am still riding the scan high (as DH and I call it). But I know that the scan dip will come soon.

Well it’s very much not my area of expertise but I have read loads now obviously.

I think the problem is that most rmc is unexplained. Whereas it’s probable that progesterone works for some people. That people with problems with placentation/clotting might benefit from aspirin/heparin. That people with immune problems might benefit from steroids and maybe some people need treatment for thyroids etc. Some of us have anatomical issues or chromosomal issues and obviously it’s possible to just be terribly unlucky as miscarriage is common. But all the studies out of necessity throw all these people in together and give them all one treatment so I suppose it’s not surprising that they don’t show a benefit. And why some clinics throw everything at people- without knowing a cause throw everything at us and hope one of the treatments works.

I believe aspirin/heparin have been shown to help if there’s issues with the placenta Anne so that could be why he’s so keen on you taking them? My pre-term clinic are quite happy for cyclogest to be used rectally by the way- possibly because all of us ladies with cervical incompetence get terribly panicky about discharge mind you!

Munchies I’m keeping everything crossed for you!

Miami will you be having cervical length scans after 12 weeks (touching wood)?

@Paranormalbouquet yes I'll be being checked regularly. They aren't too concerned as it never budged with dd, but consultant is very much covering all bases. My preterm clinic (and her specifically) specialise in IC, so they are all over it.

@Paranormalbouquet good luck today.

Good luck today @Paranormalbouquet

When are your next scans @AnneLovesGilbert and @Miami81?

Hello ladies can I join? Had erpc last Tuesday .. was twins discovered at 9 weeks stopped at 6 weeks then had to wait a week for it to be confirmed, I knew all was over.

Have a question would love your thoughts.

I’m still getting positive pregnancy tests.. does this mean I can’t ovulate? Want to try asap

Good luck @paranormalbouquet

Hello and welcome @summertimehere. Sorry you've found yourself here. I think you need negative tests before you can ovulate. Following erpc it might take a little while for your cycle to get back to normal. I didn't have a period for 3 1/2 months after mine then bled for over a month needing medication to make it stop.

Hi all, can I join too? I've got my initial RMC appointment on Monday, which I've been dreading for a while. Despite working in the nhs I do hate being a patient, it feels so exposing! I've found it so helpful and moving to read your stories. I'm really buoyed up to read about the progressing pregnancies.

I've had 3-4 mcs all between 4-5wks:

Started ttc Sept 17

-Oct 17 MC at 4wks 3d. Took a break until Feb 18, then..
-Feb 18 MC at around 4wks 3d
-March 18 ?MC at 4wks. My pg test went negative then pos. Bloods showed tiny hcg rises, and a after an ultrasound the sonographer told me it was another failing pregnancy
-May 18 Chemical pregnancy/mc at 4wks

I feel a bit weird about going to rmc with such early losses and know it could just be bad luck, but each loss has been so distressing I don't think I can carry on ttc without some investigation. My grandmother and aunt both had mcs (grandma had 5!) so I think it's worth asking the question.

My cycles are long and irregular (35-45 days) and I've tested + later in the cycle, so that could be hiding any number of things, and could mean some pregnancies were later than I realised. Or not, who knows!

I probably have PCOS, at 21 I went 9 months without a period and my bloods showed raised testosterone. I'm ashamed to say I didn't attend the ultrasound, I was 21 and stressed out and thought 'older me' will deal with this shit. As I am, I suppose..! As my bmi has always been normal I thought there wouldn't be much point in knowing. Hindsight is 20/20 I suppose.

Hi @SerenaOverjoyed and welcome. Sorry you've also found yourself here. It sounds like it's been a horrible year for you. I too work in the nhs and it's horrible being on the other side. I'm constantly in fear of seeing someone I know when I'm in for appointments etc. Good luck for your appointment on Monday. Is this just for initial bloods?

Welcome serena (love your name) and summertime, sorry for your losses

Thanks Anne. I'm glad to be here with women who get it!

Hopefulforarainbow I'm assuming just bloods, the letter just told me to turn up. It had been a horrible year. Looking back to 2017 I was so bloody naive!

Does anyone have any idea how long the bloods will take to come back?

I got mine 4 weeks later and my clinic takes place twice a month so they booked me in to come back to discuss in two clinics time. I was already pregnant again, found out that day 4 weeks on, so they moved quickly to start their treatment regime even though my results were clear which was a bit confusing and not standard NHS procedure but as were saying it’s pot luck what different clinics recommend.

I had an appointment with consultant 6 weeks after bloods. Some come back sooner than that though

Welcome to Serena and summer. Sorry you need to join this group, it is however a lovely supportive place.

Scan was mostly fine. Placenta is low however and there’s a concern about placental blood flow on one side so booked in for lots more scans. They said essentially a 20% risk of iugr, but may be nothing.

@Paranormalbouquet one way to look at that is that at least they have caught it now and that they will monitor aggressively (not the right word but you know what I mean). They never checked my placenta at 20 wk scan other than to record where it was, so it's really good that yours have.
Do they think it could be a little bit of scar tissue beneath the placenta?
The specialist placenta guy in Manchester that we saw said that placentas and babies are amazing, he said we won't feel like that because of what happened to us, but that both the placenta and the baby compensate hard for any reduction in functional area. And that they can see if happening on scans and can totally judge if there is any need to be concerned.
So also if you feel stressed at all you could ask to be seen by him at the rainbow clinic in Manchester. I hope you feel ok and I am sorry that it wasn't a full clean bill of health for you.

Hi Miami, you are exactly right, they think it’s related to scar tissue. Also my placenta is very large (probably also due to scar tissue) which means the vessels have to work harder. It’s a newly introduced test, not being done in all units. My consultant is a preterm specialist so it’s one of the first few places to roll it out. Basically it’s just a predictor of possible problems, most people will be fine. But booked for scans at 23, 28, 32 and 36 weeks to monitor. I’m sure with your history yours will be checked at 20 weeks.

They were a bit rough with cervical scan too so had some bleeding after which is never nice, but has stopped now so hopefully it’s alright!