Recurrent Miscarriage Support - tests, treatment, trying again - thread 12

[bakingtins]

Welcome everyone! A thread for anyone who has suffered recurrent losses and is in need of support, information, moral support or tea and sympathy. Newbies very welcome.

Please can we start (as is traditional) with a recap of where we are on 'the journey'.

Just a quick post as I am at work. Just wanted to say yay lurker and yay tanny fab news

Waves to everyone else

I think squiz had a different clotting problem but could be wrong. I think some people on the ttc after mc thread might have experience though. Just googled for you and a miscarriage website said some doctors think heparin and aspirin help but others are yet to be convinced and trials are on going. Don't know how up to date that is as the aspirin trial reported but maybe it's one of those annoying ones where consultants can't agree and you have a very cautious one. Very frustrating!

Oh btw for anyone who suspects similar issues, this morning's scan confirmed I have polycystic ovaries. The pornographer says there is a 'slight link' between that and mc but it's not well understood. I think it is the blow progesterone issue that causes the link but i am an armchair doctor!

Agh! Epic autocorrect fail. Sonographer.

Lol! Longest, you've just made my day!

Obviously sorry you have pcos...

Is ok. If I get this bean to stick I have no more asks of them really. Will stop at dc2.

Sonographer and I did share a moment where I was uncomfortably aware my feet were pressed against her boobs, though since she had a wand inside me at the time I figured we were even. So perhaps it was Freudian.

Best autocorrect

Hahaha *pornographer

At the autocorrect, that is brilliant!

Lurker I have APS but was told by St Marys that any clotting condition is best treated as the placenta forms so shortly after bfp. This is what they did for me- had some written notes from the consultant which I presented to my GP and she gave me the prescription.
Do check because it can't hurt to start then week 4-5 and will cost just an extra week or twos prescription!

The trials were done in the 19 90s! Proven 100% for APS at least ... They wouldn't do it on the nhs otherwise they have no cash for unproven treatments.

Tanny that's brilliant!
Longest also brilliant! .as you had a late positive hpt that could definitely explain being a few days out, especially with long cycles.

curtains I am sorry for all your losses, but the late loss of twins must have been particularly gruelling. What a rough road. I'm afraid I also have no experience of factor V Leiden. As many are happy to prescribe aspirin and clexane for a lot less than that, it's hard to understand why they would refuse. You said it was 2nd hand information, maybe just going back to your consultant and asking what the theory is behind giving it from a 'viable' pregnancy would be enough to get a proper exp!anation or a different plan?

I have heard (sorry no definitive source) that although low progesterone may cause mc, it may also be a sign of a failing pregnancy, not necessarily a cause, so even with top ups, it won't usually affect the outcome. Having said that, Prof Brosen in Coventry told me yesterday that 'progesterone drives the uterine lining' - (as I hang on to failed pregnancies so long, I presume my progesterone levels are fine). Hence he prescribes it to all. I really need to find the time to read more as I'm not sure i understand exactly how it drives tbe lining.

Tiny i dont have the cyclogest yet - he did write a prescription to use in coventry, but i didnt have time to go and wait for probably ages for it in the pharmacy. (DS had a head injury on sunday - it turned out that he was fine but i really didnt want to be away from him long, and had travelled from london) He said to take it to my local EPU and tbey'll probably write it up.

cloud any advance on thoughts of what to do around O time? Feel for you.

Wow, everytime I don't check in for a few days, things move on really quick.

Yeah Tanny & longest- excellent news x

Hello, to all the newbies, hope you're getting lots of support from here and those around you. Waves to everyone else x
Today has been another one of those milestones with the arrival of first period since last mc. I know it was going to happen but it's another reminder of what's happened. Anyway looking to be future it does mean I can book in the hormonal tests to hopefully begin my journey into getting a positive outcome.Also going back to slimming world this week to loose the extra pounds gained through consoling myself in cake duringpast month!

Hey everyone - such positive news from Tanny and longest, gives the rest of us much needed hope - good luck.

I had my first appointment with Professor Regan today and found her really impressive. It feels good to be making some positive steps to finding out the reason (if any) for my 3 miscarriages in the space of 10 months. I had more blood tests and need to have an hysteroscopy. Go back in 3 weeks to find out the results, by which time I am hoping that Guy's will have released the findings of my June miscarriage. No idea why it takes the NHS so long to forward notes..

My other half had the cheek to complain about how painful the blood test he had was today! Pah, the one I had at Tommy's the other week left my whole arm black and blue! Proof that women have a stronger pain barrier I think!

Hugs for ((( girlie ))) first AF is always rotten.

barrelita glad you got on well at St Mary's. Your DH has a bloody cheek! One measly tube of blood after all you've put up with!

I think the novel thing in Coventry is using the progesterone early in the cycle, you need good levels (and nobody seems to know/agree what a good level is) to have a decent lining for a fertilised egg to implant. Their theory is by the time you get a BFP that ship has sailed. My last MC I was on progesterone from a few days after BFP, didn't do anything except poss prolong the loss (Prof Regan says low progesterone is a sign, not a cause of a failing pregnancy). I know there's research showing using it in the same way as Coventry improves outcomes in IVF. Personally I think it was the steroids that made the difference for me, I've had comments on how good my lining is whenever I've had scans, but since it seems it can help in some cases, and it's pretty innocuous (if you're being scanned regularly no worries about MMC going unnoticed) I don't know why it's not more widely prescribed. I know the PROMISE trial has not reported yet but I think the protocol there is using it from BFP anyway?

Small mercies... DH's car written off in crash. He's fine, thank goodness. Life's so minute to minute... Drive safely everyone!

just glad DH is fine, but must have been a shock all round, hope you (and he) are ok.

barrelita great that your appointment at St Mary's went well. Must feel good to have things moving forwards in terms of investigations. And pah indeed to your OH's blood test!

Interesting what you say about progesterone baking, gosh there still seems so much for me to learn, I really do think this rmc field is moving fast in terms of research.

Glad he's ok just hope neither of you are too shaken up.

Glad your DH is fine just
how scary!

St Mary's protocol is no longer to prescribe progesterone from bfp, at least it wasn't from Mr Rai. He said it would be unethical to prescribe it while the trial results are pending though that seemed ott to me when just months previously he had been prescribing it to everyone on the trial and I was hoping to persuade my gp otherwise after some hormone tests but I never got to have those because I got my bfp instead. So I am on no treatment at all, which is a bit scary. Prof Regan does say that low progesterone can cause mc in her book but she means low progesterone levels before bfp and thinks supplements are too little too late. There must be a good chance it helps though if they commissioned a trial.

Hugs to girlie, though try to think of it as a positive step, and to Just, what a shock. Glad you got on well, Barrelita.

Thanks for the info Squiz. It wasn't me who has the clotting disorder but I am sure your post will help curtains. How is your lovely daughter?

So I'm currently sat waiting for my blood test at my local community hospital which turns out to be in the same rooms used by the midwifes- ironic!

Just- nightmare and hopefully you've managed a goodnight's sleep. Certainly someone was looking out for your DH x

Don't know if this helps but St Mary's in Manchester said to me that next time I get a BFP they want me to contact them immediately for herapin, progesterone pesorries and asprin. They also said if I can't get over to them (we live a while away from there) to go to my gp and ask for for the pessories to use immediately. They added that they will want to do 48 hour bloods for the first three months as well - don't know if this is standard or specific to my case although we haven't been told any findings or anything until the RMC next month. Hope this helps and it's so good to see some good news!