Recurrent Miscarriage Support Thread - Thread 17 - Tests, treatment and trying again

[Flower29]

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

baking - glad faith hasn't had any more spasms but really sorry to hear that the hospital / gp are still being unresponsive. You are so right - there just doesn't seem to be a sense of urgency from anyone and it just feels like you constantly have to pester to be seen / get the drugs you need etc. Hugs to you and really hoping that the gp comes through tomorrow re the vaccine. X

Oh, baking, how incredibly frustrating! I can understand your anger, it is so infuriating when a seemingly simple thing takes so much effort to get sorted. Not what you need on top of everything else! Hugs x

flower and brummie - do cry. Scream. Wail. Break plates. Whatever you feel you need to do, do it. There is no right or wrong grieving, anything goes. And the more you let it out somehow, the better!

Mc is an incredibly isolating experience. Even your closest family members and best friends will only be able to understand so much, and as much as they might try, they might never 'get' it properly. And the people that have gone through the same usually keep it to themselves... Understandably. It is so different for everyone. I clearly remember how after my 2nd mc, I would get 'the rage' sometimes in a way that almost scared me! (Fortunately, I managed to channel it through gardening at the time, so no one got hurt).
And yes, you might feel dismissed - if not by healthcare services, then by your family, friends, work... They can't keep up, they don't know what to do/say, sadly we have to deal with the fallout by ourselves, most of the time. Like others have said, my family (or DH's family) never brings up the mc, asks how I am, what our plans are etc (apart from my sister). Most of the time, I'm OK with that, but sometimes, it does bug me massively. My mum can spend ages telling me all about her medical woes, but never thinks to ask about me.

It makes you appreciate when someone does make an effort, though - about 6 weeks after my last mc, I got a phone call from my GP (at 7pm), saying how utterly sorry she was that this had happened to me and to immediately get in touch, if there was anything that I needed from her. She didn't have to phone me, there were no outstanding test results or anything to follow up with, it was just a lovely and kind gesture, and I really appreciated it. Silver linings and all.

Wow cloud - what a lovely gp you have????

I love the idea of you taking the rage out on your garden and creating something beautiful from it. Makes me think I should be doing something positive with it too....

Hi all, sorry I have been about absent, trying to keep my thoughts away from pregnancy & MC as was feeling a bit overwhelmed. sun you just put my worry exactly. Was good to know MC 3 was chromosomal (by good I mean conclusive I guess) but now I am preg again I am thinking if it was the same for 1&2, why would it be different for 4? I know you just have to have faith something will work but it's hard.
twilight good luck on Thursday.
baking I am so sorry you are having such a worrying and frustrating time, I really hope things get better and they start to find some answers.
To all those with the random anger & crying. I agree, I think it's a natural part of the grieving process and an expression of all the not knowing and waiting and frustration.

cloud I am on the garden therapy right now, I find it helps to be outside and feeling something is achieved.
tanny you must be officially at term now! Amazing! Good luck, can't wait for news.
Sorry not to mention everyone but thinking of you all.

It was me who was advised they'd karyotype after 3rd but don't tend to test the foetus. I had just finished reading Prof Regans book and know she emphasises testing chromosomes, like you say Baking if it tests normal then you can move on to other causes. Think my mind just want blank after going over the appointment in my mind the whole weekend before, then was so cross with myself for getting nervous, rambling and not even looking at my notes. And of course Dr for not reminding me. Will raise the questions at next appointment in 6 weeks, but it did feel like he shut down as soon as I'd said 2 not 3 mcs.
I say a Mr Sharp Tanny. He made it sound like prof Quenby worked for him years ago. I lost faith when he had no idea what the TABLET trial was and had to explain it was a nationwide trial going on.

Feeling glad to be alive today though as we travelled home up the same road as the accident prob 10mins before it happened.

Flower sorry about your meltdown, it really can take you unawares can't it? I had a tantrum last week when I couldn't find a pen, no one else in the house, but I couldn't believe how angry I was!

Sorry for those with unsupportive families, mine are rubbish too. I call my dad and say I'm just calling to see how he can put his foot in it this time and make a joke of it. My mum tries, but I just end up frustrated so I've not rang her too much.

Tanny massive congrats on reaching term. My friend is overdue now but dreamt she'd gone into labour and I was taking her to hospital on a double decker bus lol.

Sorry to those I've missed. Feeling very comfortable confused at the conflicting advice we're each given, trying to focus on my work half the days (making lots of mistakes which totally isn't me) and planning low gi meals is very time consuming! Big hugs to you all. I hope in time I can offer words of wisdom too.

Arrrggghhhh...that many typos isn't me either! Do not GP and no idea how that extra "comfortable" got in there.

DP not do or GP. He had the list in his hand!

Sorry, falling behind.
brummie on the 'no one wants to listen' yes - I feel like sometimes I try to talk to friends, and they just don't want to talk about my lack of a baby, or about the mc's, or failed iui. I don't blame them I suppose, but I can't keep off loading on DH, it's not fair. And he really doesn't get it anyway, he just wants his happy wife back and gets frustrated when I remain sad and don't know how to flick that happy switch back on.

sun and others talking about family support or lack thereof - I sent my mum a text to tell her the iui had failed. She just sent a text back saying sorry. She didn't follow up with a phone call or a further text to ask if I was ok. Not exactly the support I'd like. I have definitely felt more and more distanced from her over the last 3 years as she has shown no empathy at all. After the 1st mc she said 'that's the trouble with finding out so early these days'. Wtf? Surely even in the 'olden days' a missed AF meant you thought you were pg?!

boozle sorry, I don't have any advice as I have blood clotting issues so my plan of the heparin from bfp to post birth is based on that. I greatly sympathise with the frustration of conflicting consultant advice on something so vitally important to you though, it's so difficult to feel confident when they say different things.

flower29 so sorry, it's horrible when it hits you out of the blue and suddenly you're back to that raw stage you thought was gone.
I've got my head in the sand over the due date, keep trying to forget it, but it's not easy when one colleague is leaving for mat leave next week and another who is management keeps referring to organising things for 'when she is on mat leave' in a couple of months. Neither works in the office full time, but it seems to hit me harder each time I see the growing bump.

baking I'm so sorry you're still chasing, it's not what you need and it's not fair.

twilight well done on getting the extra scan, everything crossed for you.

I just feel very down at the moment. The UTI I had a couple of weeks ago didn't clear completely, and yesterday I had to go back to the gp to give a FOURTH urine sample as the last one still showed the infection had gone but it still had traces of blood in it. Since the weekend I've had a stinking cold. Last night I woke before 3am, desperate for the toilet and dripping with sweat to the extent that I had to go and change my pyjamas. I have horrible AF cramps today and am feeling very tired, shaky and generally unwell. And on top of it all, I just feel sad.

Hugs Barking Yep you've described it perfectly, just feel so sad. And the feeling of seeing your colleagues bump. Never gets any easier xx

Flen just seen your blog on Twitter!!

Oh Barking I really feel for you. I think sometimes you need to spell out to people exactly what it is you need, unfortunately.

Thanks everyone. I've rung my midwife and asked her to see if she can make any sense of it all. I think the main downsides are things such as osteoporosis - I haven't had any blood tests since I've been on it so I'm not sure of anything!

Seems today as been a bit of a low day for a few people. Hope tomorrow is a better day x

Had my annual review today which traditionally I've achieved an over delivery grade, however this year due to the MCs, I only got an satisfactory. My manager was very complementary about the work I had done BUT due to my sickness record last year it meant a number of projects didn't deliver, so I can't argue the grade. Just another frustration of the impact of an MC.

Did take the initiative and showed my manager my development plan, which includes aiming for a promotion. Fed up of putting career on back burners for past 3 years so decided to do something for me and if I get pregnant then it won't be wasted.

Hi all
I hope it is okay to join this thread - don't know who to talk to anymore. As others have said, it gets harder to talk about recurrent miscarriages with each one that happens :( I am currently pregnant, six weeks in theory, but early scan dated it at less than five and I have no pregnancy symptoms (unless crying is one!). I have one beautiful daughter who is three. But after her I have had a chemical pregnancy, a missed miscarriage at 12 weeks and three further naturally managed miscarriages between 6-8 weeks. I am under consultant care with an EPU now, after the fourth miscarriage, but that took determination to finally be referred. My GP kept saying i had a 98% risk of mc due to my age - thanks! After bloodworks I am now on Heparin and Asprin for ALS, Predisonole for autoimmune problems and Cyclogest for low progesterone. But none of this makes the rollercoaster any smoother - still convinced this will also fail in some kind of weird 'disappointment management'. Sorry to be so down, my hubby doesn't really know how to help anymore... He has decided he doesn't want another child now instead. I have another scan in a weeks time, but the waiting is just emotional torture. As you say Brummiegirl, I just feel sad too. Here's hugs to everyone dealing with the sadness miscarriage leaves. X

barking my mum said exactly the same about testing early! MENTAL. Sending you some more hugs and wishing you some lovely things to get you through these horrible days.

brummie hooray!

Thanks ladies . It helps to offload here!

Hello rollercoaster sorry you're here. I can't believe what your gp said, I have no idea how old you are but that sounds absolutely ridiculous to me!! I'm sure someone else could reference sensible statistics rather than merely dismissing the 98% as nonsense, but I'm pretty confident of that judgement. I'm so sorry you had an inconclusive scan and are in that limbo hell, it's just an horrific place to be.
A quote I read a lot when I was in a similar limbo went something like courage doesn't always roar like a lion, sometimes it's that small voice that says 'I will try again tomorrow'. Sometimes you just need to put your head down and keep putting one foot in front of the other and consider that enough of an achievement each day until such time when you're ready to look up.

Barking and Cloud and everyone else has summed it so eloquently.

Welcome Rollercoaster so sorry for all your losses. There are lots of (sadly) very experienced people on this thread but it means lots of support.

We also have our living and breathing examples of how it does work out with our very own Tanny about up drop

Pull up a chair - we are all in it together and these ladies are incredible

baking that's utterly crap that you are still having to fight for meds and reviews. I really hope your persistance pays off soon.

flower grief catches you at funny times hey, I think you just have to go with it. Hope it lifts a bit soon.

barking that's not helpful that you are feeling physically so unwell, that sounds like one persistent urine infection - did the gp say to come back if you don't start to feel better soon? It must be so gruelling for you to go through this gutting disappointment. Lots of hugs to you.

Welcome rollercoaster, I am so sorry for your losses. As you say, and as per the current conversation on here, RMC is very isolating. No-one can really understand unless they have been through it. Can I ask how old you are? What a bizarre comment for your gp to make! I have never heard of any age that suggests a 98% chance of mc. I have heard the age thing sooo many times from different doctors, and it does get frustrating, as I sometimes feel I am just written off because I am 41. Like you I have had 5 losses since having my lovely DS (now 3), and I don't believe tbat age is the only thing going on. With your current pg it must be seeming like a really long wait, and I hope the next scan shows progress. In the meantime, sending hugs your way.

Beautifully put barking, and by the way my post kind of makes it sound like I am referring to the urine infection as a gruelling disappointment..obviously I mean the iui... x

flen, barking - my gp actually said the same thing. 'In our mothers generation women didn't assume they were pregnant until the had missed two periods'! Really?! After no af for 7 weeks, they didn't start to think 'this is a bit odd'?? To say nothing of sore boobs, stuffy nose, food tasting wierd?!!!!!

flen - I just read some of your blog. It is awesome. I love the post about the tww. Completely identified with all those habits . So looking forward to embarking on these for the next two weeks - sigh.

rollercoaster - sorry you find yourself here but welcome. As others have said, these ladies are fab. Hhhm - 98% chance of miscarriage because of age - sorry but that must be complete crap. I had a conversation about age / chances of mc etc with my rmc consultant a couple of weeks ago. She quoted the most negative statistics I have come across which were that at my age - 38 - there is a 1 in 3 chance of mc (most other sources I have read say 1 in 4). And that by 44 it would be a 2 in 3 chance - so that's still 33% that statistically would be fine and nowhere near the 2% your gp is quoting.

x

Hmmmm, so many people said a similar thing to me about testing early and our parents generation. I think that unless the entirety of it was completely zoned out of their bodies there's no way they could have all 'not noticed' they were pregnant - especially if they were trying. But then again my mum says some bizarre things to me full stop!

Thank you sun, glad you liked it. TWW is hellish, we'll all be here to help you through it.

We are almost back at daily dtd time... Thank god it will be half term or I don't know how I'd get the energy. I have just drunk a glass full of dark greeny-brown smoothie. It had spinach in it. I now consider myself the healthiest person on the whole planet.

Morning everyone.

Welcome rollercoaster and so sorry you find yourself here. Sounds like you've had a really rough time of it. Everyone on here is so supportive and knowledgeable. It has been, and continues to be a lifeline for me as I don't really have anyone in RL to talk to about this who fully understands. Really keeping everything crossed that this pregnancy progresses. That inconclusive scan is such torture in the meantime.

As I Think I've mentioned before, my mother is another one who told me that in her day we probably wouldn't have known about miscarriages as they didn't have hpts. She had had a discussion With her hairdresser about it on the back of my second mc. This was supposed to make me feel better?

In an ironic twist. She is probably right this time, as I had a negative hpt this morning at 17dpo. So it looks like it's been a chemical pregnancy. I feel utterly broken. I knew, As all my symptoms had gone. Still no bleeding and a very very feint line came up after about 10 mins (says not to read result after 3), but it was the strongest fmu so there's no denying it. Progesterone will mask the bleeding so don't know what to do now. Do I stop the Progesterone now or wait a bit longer?

Just told my sister that I was pg on Monday as I knew I would need the support this time and she is coming up this w/e with her dh and 3 boys. Now going to have to pretend nothing is wrong the whole weekend as i know she wouldn't come if she knew.

My only vaguely positive thought was that maybe the Progesterone had done the decidualisation thing and this is it rejecting a bad egg. Whilst this is better than accepting it and losing it later, I would just rather have never had the positive result. I had such high hopes this time. But now almost feel like a fraud that I was ever pg.
Can't imagine ever being able to muster that hopefulness again.

Think I'm going to contact Coventry today and see what they say about when I can go down.

Oh March, that's horrible. How gutting to think yes and then have it change. Can you get advice from consultant/GP about the progesterone? Maybe someone here can advise. Hugs to you and look after yourself.

Oh march - that's so rubbish, so sorry to hear that. It is horrid to feel so high and then so low in such a short time. Big hugs and take really good care of yourself. I've never used progesterone so afraid I can't help on whether to stop but am sure one of these lovely ladies will be along soon with some advice. x