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Original poster

Recurrent Miscarriage Support Thread 15 - tests, treatment and trying again

990 replies

Justonemoretime · 01/01/2015 09:02

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats :)

OP posts:
Original poster
Justonemoretime · 07/01/2015 17:20

As for waiting, I had such complicated and protracted recoveries from erpcs due to an undiagnosed septum that trying again always took months. The one time I had my erpc done with ultrasound guidance, my recovery was 28 days like clockwork, but by then we were on the list for st Mary's and they basically say if you're pg before your appointment, don't bother coming in. It was frustrating, but I also wanted answers as I didn't won't to do it again and find out I could have got treatment. As it was, I was all clear (although they did sort out the septum), but I think it would have been terribly stressful to try again without some kind of results. I used the time to get fit and did some long distance swims for Tommy's, and also chill out and enjoy life a bit. It was good to take the pressure off, even though our long term goals didn't change. You'll know what's right for you, but that's my experience fwiw. x

OP posts:
Catlover2014 · 07/01/2015 17:27

Hugs Brummie rest up and keep warm. If the bleed is anything like mine was it will pass quite quickly. X

ourdaywillcome1983 · 07/01/2015 17:42

Also sending big hugs to you brummie x

Marchgirl · 07/01/2015 17:54

Hugs brummie. Hope it passes quickly and you feel better soon X

Well I am feeling much more positive today now AF has officially arrived. Trying to think of it as a new start (and it means I can drink at the Burns supper in two weeks! )

only thought about it late last night but perhaps the massive crash in hormones from coming off the progesterone had something to do with me feeling so utterly shit. I'll have to bear that in mind for next month. Anyone else experienced this?

Catlover2014 · 07/01/2015 18:22

March yes progesterone meds can really mess with your mood and hormones. I feel it played a big part in my depression. Do you use it from day 21? X

barkingtreefrog · 07/01/2015 18:24

I had forced waiting after both mc, AF went awol for 4 months after the first one, only returned after acupuncture, and it took 5 weeks to get a bfn after the 2nd, then we had to wait for the tests, some of which they did 12 weeks after the mc, then the results. Waiting after the first drove me crazy as I was desperate to get going again, but this time I needed a break (I'd found the iui very stressful as well due to various things that didn't go exactly according to plan, before we even knew whether it had worked or not) and it wasn't until we'd waited 3 months I started getting impatient - now, 7 months later, I can't wait to get properly started!!! (fingers crossed next week). Technically we started ttc again this month, but I don't hold out much hope of a miraculous natural conception!

Marchgirl · 07/01/2015 18:48

You never know Barking. I've read quite a few stories recently about a 'miraculous' natural conception. Fingers crossed, plus you have your back up plan ready.

Yes cat, from equivalent of cd 21 (actually cd29 this month), I'm ignoring the consultant who said from bfp.

Anyone used any supplements to shorten long cycles? Mine was 38 days this month and I'm not sure that's a good thing (especially for someone as impatient as me!)

barkingtreefrog · 07/01/2015 18:51

March Not supplements, but acupuncture evened out my cycles.

Sunandrainbow · 07/01/2015 19:09

march - acupuncture seemed to get mine back on track after last mc.

bootles · 07/01/2015 19:20

Woah, I am bound to forget people with each post its so speedy.

Tanny sorry for getting wrong day - I don't know what day it is half the time. Hope it goes ok next week.

brummie sorry you are feeling this way. Its just so hard. I had the same bloods as you at my first RMC appointment, and no-one has ever ever looked at my hormones/progesterone, either. Whether this is because I have regular cycles and hold on to the pregnancys after they have died, I dont know - I think they just said hormones are unlikely to be the problem. They will also want to discuss any chromosome results they managed to get.

As for waiting..its tough isn't it. Sometimes I waited, sometimes I didn't. When I didnt I used the logic that I would TTC even though I shouldn't, would probably not get pg on the first month, but 'use up' a month so that the next month would be a step closer (I know, what logic?). Look after yourself, snuggle up in your PJ's. My bleeding has pretty much stopped now, 9 days post erpc, hope yours isn't too bad. I am however, plagued with dreadful headaches.

Having flashbacks to the good post 8 WK wriggly scan..

Sunandrainbow · 07/01/2015 19:31

Did any of you ladies who have had ivf, have genetic testing of the embryos before they were put back in (sorry not sure of the technical term for this?). It has anyone discussed it with their consultants? Thx

AndCounting · 07/01/2015 19:33

Hi all

brummie hugs to you and feel better soon

twilight you perfectly articulated the stress of trying to work out what order to do everything in. I suppose the problem is there's no right answer.

Having said that, please could someone check over my plan of attack and let me know whether it seems sensible or if I've missed anything?

  1. I can't remember what tests I have and haven't had at this point, so step one is to ask GP to give me a list of what's already been tested and then show it to you wise and wonderful friends (like brummie did) ( can I ask my GP to do that?)
  2. I am going to head to Coventry next month (they said wait one period after mc), as someone (longest?) Helpfully suggested that implantation could be at work here as MCs all at around 6-8 wks but I have one Ds(1st pregnancy)
  3. Meantime no TTC as that would jepordise the Coventry visit
  4. GP is following up on my EPAU referral to local recurrent miscarriage clinic, I think I have already been to it and moved on (as I did wait a long time to see a consultant who read my notes, examined me and then said 'they're not all destined to survive' and no further investigations,) however GP says this is the route for the genetic tests (kyrotyping?) Which I know I have not had as that is me and DH right?
  5. I have decided NOT to request referral to St Marys at the moment as, from my understanding I am likely to come away from Coventry with a treatment plan (is that right?) which I will want us to immediately put into action and if I was still waiting to go to St Marys that would mess with my head.

Thank you in advance for any help. Reading my own questions I can see how little I have been paying attention to the medical side of all of this. D- for Counting. Must do better.

Xxx to you all

bootles · 07/01/2015 19:33

baking tough one. I told DS about the 2nd (tfmr) as I was struggling, and he had heard medical people saying 'baby' and seen me in a state (bad idea to take him to that scan - but there were reasons at the time). He was only 2.5 so I made it v simple. I haven't told him about any of the others as it feels wrong to keep saying it at his age (3.75) I will when he's older though. I agree that they accept things at a younger age, and if your DS is asking questions now maybe it's a good time? Personally I would go for a matter of fact approach, as Tanny described.

Sunandrainbow · 07/01/2015 19:34

.... just wondering if this is an avenue to explore.

AndCounting · 07/01/2015 19:35

I'm sorry for your loss, Tanny. X

Monten · 07/01/2015 19:38

No I haven't march but I heard B6 (or all the B vitamins) can regulate cycles. I started taking it after mc 2. Since then my cycles are generally shorter. Used to be 35 like clockwork, now anything from 27-33. That could just be due to the mc screwing up my cycles though.....

What does everyone think about acupuncture? I believe in it but not quite sure why I do. I'm not sure I buy the whole energy flow thing. The first time I tried it I got pregnant that week Shock. I think that was a coincidence tho... I started again a couple of weeks ago to stimulate my uterine lining. I got really strong ov pains afterwards, am sure it does something. Just not sure what!

AndCounting · 07/01/2015 19:43

Wouldn't it be great if you could sort messages by sender, like with emails? It would be great on a thread like this to help learn who everyone is.

Bootles have we already noticed that our dss are practically the same age? (Mine is 3.95 yrs). His birthday is a week sat and while I'm sure it will be lovely, each milestone does has a bittersweet side.

bootles · 07/01/2015 19:43

counting

  1. yes you can ask gp to do tbat
  2. bodies can change between pg's - whilst you are unlikely to suddenly develop a clotting disorder or structural uterine issue or anything of tbat nature, hormones, NK cells etc can change. Coventry told me something like a third of their patients have a child already.
  3. exactly
  4. genetic tests may mean on the embryo's or on you and DH - sorry I forget, did you have testing on any of the embryos/the last one?
  5. sounds reasonable, as long as you confirm with the gp you have been tested for the usual things first, before Coventry. And yes, they will give you a treatment plan, and confirm/add to it when NK cell results are back

I have a 'mc file' with all the paperwork, it really helps me.

AndCounting · 07/01/2015 19:45

I had lots of acupuncture last year, Monten, with no appreciable result. It cost a lot. However, I'm aware lots of people really find it helps.

AndCounting · 07/01/2015 19:50

Thanks, Bootles. Right, one mc file coming right up. I have a reputation for organisation, obviously my relentless optimism/denial intervened here.

  1. Missed the boat for testing products on this last one unfortunately. ( See point on denial above)

Thanks again. X

longestlurkerever · 07/01/2015 20:03

Sun I am not sure that anyone on this thread has had Ivf, though cat had some preliminary investigations and a couple of people have had iui. Ivf with embryo selection would be an option if you have a genetic predisposition to chromosomal abnormalities but that is quite rare. Do you know if your embryos have been chromosomally normal.

counting I agree with Bootles. It sounds like a good plan as long as (5) is subject to(1) as I think Coventry would want to know you had had the clotting stuff ruled out too.

March. I took agnus castus to try and shorten by regular but unusually long 42 day cycle. I don't know if it worked or not. My wtf cycle was the usual 42 days though my previous wtf cycle was more like 8 weeks. I got pregnant the next cycle, which is unusually quick for me and I think ovulation may have been brought forward a couple of days. Importantly I also seem to have hung onto this one, possibly due to it having increased my progesterone levels as it is the only different factor I had this time until 8 weeks though it could of course have been a coincidence. I checked with Mr Rai before taking it as it's quite a powerful herb and can mess up cycles if they're already regular.

longestlurkerever · 07/01/2015 20:04

I am a bit sceptical of acupuncture tbh but who knows really.

longestlurkerever · 07/01/2015 20:07

Ps i think you can acquire some of the clotting disorders. Others are genetic and you would always have had them.

Sunandrainbow · 07/01/2015 20:32

Ah - ok. Thanks longest. Think am just clutching at anything I hear about at the moment. x

girliesaints · 07/01/2015 20:44

Wow, can't believe how quickly this thread is moving at the moment. Sorry if I miss anyone...

Brummie- big hugs& hope bleeding
Is easy off. Understand frustration of waiting and it is everyone's choice but haven waited nearly 12 wks for referral, I have to say it's done a lot of good and I feel ready.

Bootle- hope each day's coming. A bit more bearable x

And counting- my Dh is 4 on the Sunday, so exactly the same age. Is your's a devil or Saint?

Tanny- planning maternity leave already, wowzers!

I have the long awaited consultant appointment tomorrow. Not sure what to expect as I haven't been advised if they are taking any more bloods etc. Trying to not get too stressed by it but at least OH and I have had a discussion around what our plan is and if we don't get what we want then we'll consider private/ Coventry. Also have next sw weigh in tomorrow. So either way I'll either be very happy or one pissed off bunny!