Recurrent miscarriage support - tests, treatment, trying again - thread 8

[Bakingtins]

Welcome everyone, pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of company, information, moral support, tea or sympathy.

Can I suggest we start page 1 with a recap of where we are all up to, because my fuddled head can't keep track?

Congratulations Tanny hope this is a sticky one. I'd phone your RMC clinic for advice, they might see you sooner or tell you to start some of the 'can't hurt' treatments.

Hello may I join? Im really a lurker but wondered if anyone had anything helpful to suggest? I'm a wee bit of a mess.

One dc aged three. Mc at 7 and a half weeks April 2012. MMC in December 2012 at 11 and a half weeks, measuring 7 and a half. This was awful actually - I had known something was wrong but my gp told me everything was ok and I was just worried cos of the previous mc. I eventually got scanned after throwing a massive wobbly (my head exploded after four weeks of knowing something wasn't right). It was the weekend before Christmas. I walked in from the hospital and ripped down the decorations. It was the edd of the first mc. Since then an early mc in May 2013.

I'm 35 in a few days

Referred to local gynae clinic who have done blood tests but no results. Consultant very unencouraging saying that in 90% of cases they don't find anything and 'off the record' to take low dose aspirin.

Dp not really getting any of this. He just wants an easy life.

I'm absolutely terrified of getting pg again. I always 'know' I'm pg very very early and have days of waiting before I can get a bfp and then the weeks of 'am I feeling sicker / less sick' for weeks until it goes wrong . I had HG with dc1 and I just don't seem to be any good at being pg. Its just so hard to find anyone to talk to and I get tearful very quickly. I just wondered if anyone had any tips for not going insane? Please be kind.

I feel so alone.

"This is awful" - stupid sorry. All mc are awful. I didnt mean anything by it just that I got caught in some nightmare inside my head. Sorry

Hi Worry I'm so sorry to hear what you've been through, but you don't need to feel alone with it because there are so many of us who have similar stories. I thin it really helps to have a place to vent your feelings a bit. You'd probably get a lot out of watching the documentary that just linked to on the previous page - it's a bit of a lightbulb moment to realise that everyone who goes through repeated losses has similar emotions about it all.
When you say you've had no results from the gynae clinic, do you mean they are all normal or you are still waiting for them? The usual figure quoted for finding a cause on the standard set of tests is about 50%. All the medics seem to agree it's better to be in the 'no cause found' group as your chances of success subsequently are better, but I think emotionally that is difficult as you feel a bit powerless to change the outcome. I was 'no cause' on the standard tests but then lost another baby which cytognetics showed was perfect so went private to pursue the reproductive immunology route. I now have a diagnosis and a treatment plan, which made me feel much more positive about trying again.
As a minimum the RMC clinic should be offering to monitor you regularly in a subsequent pregnancy and give some moral support. Is asking to be referred onwards to somewhere like St Marys an option?

Baking thank you for a reply. I seem ti be a bit mired in it all at the moment - I said its my birthday soon and it was my birthday that I got a bfp which I then lost at Christmas.

I'm on a mobile which is why my typing is so bad but I will definitely watch the documentary when I get to my pc - thank you for pointing it out.

I haven't had any results yet from gynae blood tests. I'm in an area of the uk without any rm clinics at all and apparently theres only one consultant specializing in rm for a hugr area. My plan is to see through the bloods with gynae then ask for referral to rm consultant and if they won't refer me, then pursue him privately. I have heard the 50% causes identified statistic before which is when I lost faith in the doctor sitting in front of me - I uunderstand what she was trying to do - it was somehow meant to be reassuring but it didnt work.

I guess I'm just really struggling with the idea of getting pg again and it all going wrong. I've lost faith that I can do this. I need to buck up, I know, I'm just having a bad few weeks. Its lovely to see people who do understand getting good results.

worry I'm sorry you are feeling so bad. baking has wise words.
All I wanted to say was I have been where you are. rc mc is soul destroying. I don't think I will ever fully heal from it but what has happened (with cbt counselling and time) is that I can handle it in a way that allows me to move on. I have lost 3 babies over the course of a year and all my tests have come back normal. I'm in NI and we don't have a rmc clinic either
I'm getting to the stage of wanting to try again. Its been a long slow painful process to get to be able to say that.
You will get lots of helpful advice and most importantly support here.

worry so sorry to hear your story. All I can do is second everything baking said! I went to st Mary's - their tests are very sensitive and I was diagnosed within months whereas my GP wasn't clued up as they were all early losses (but at least admitted she didnt know!). My hospital gynie consultant was very useful in pushing through referrals; could you maybe contact your epu?

Hi and welcome worry. So sorry you are being messed about and frustrated. If you are not near st Marys, maybe Liverpool is an option? I'd make some enquiries. Once you get in the right system you may feel you have some control back. Btw, you are not alone; I have not put any Christmas decorations up for 2 years and I don't plan on starting this year either. Humbug! I think my biggest melt down moment was walking out of evensong at Christ's chapel Cambridge and when the vicar asked if I was ok (the service was about to begin) I told him what had happened and exactly why I wasn't in the market for a pry just then. []

ooops meant pray. Stoopid phone!

It's very hard when an anniversary or due date coincides with another special day in the calendar. EDD of my first MC was my birthday and because it never entered my head that I'd MC I had spent ages daydreaming about sharing a birthday with my baby. My birthday has been bittersweet ever since - it's the end of this month and she'd be 4 this year
I find it very helpful to do something positive to mark those significant days - I have a little tradition of buying a baby-related charity gift (e.g. midwife training or newborn vaccinations) which is going to bankrupt me at this rate on the EDDs.
It's very sad to hear it is spoiling Christmas for you, I hope you can find a way of both acknowledging the loss and celebrating this year.

Two of my EDDs are in the run up to Christmas; 17th Dec and 24th Dec. The other is in mid June. :( xx

Gotta stop DTD on my birthday (end of March) ;)

One of my edd was also Christmas day...

Nothing else to do on those long dark evenings....

Hello and thank you all, ladies. I think one of the worst things about rm is finding people to talk to. Even good friends are adrift somehow and the more people that you confide in who dismiss it all and end up making you feel worse, the more you need to talk. In the last week, I've been told three times that my dc needs a sibling by strangers. I wouldn't believe it except I was there...

nearly I'm in NI too. I can't find much info on whats available although through a forum on another site, I've heard of the name of a rm consultant? I'm not from NI either so I feel quite unsure of the system.

just I'm trying so hard with Christmas this year but I just feel swept up in what happened last year. I don't want to remember but I can't help it. I do feel like I'm going mad. I feel a bit daft stressing that I really want another baby - we all want that dont we? - but I am really scared. Then not really having anyone to talk to about it... I see those POAS threads on a Friday and Im about a million miles from all of that. Being pregnant for me means being violently sick several times a day and feeling absolutely dreadful - and being terrified I'll start to feel better. .

If I could forget all this for a few months I'd feel better I think but I'm such a parody - there are times when all I can see are babies and pregnant ladies. This is just a phase, right? While I'm hurting like this?

Hi Worry and welcome. I have found these MN buses so amazing and non judgemental, and I hope you find them useful.
I got a BFP this morning, and yes, I am terrified. I haven't had anywhere near the trauma you have, and my heart goes out to you.

My EDD for my mc in April was yesterday, I had another in August and have the next one in June. None at Christmas, but plenty of other buttons to press then!

I am 41 and still waiting for my rmc referral in a couple of weeks, but whatever the outcome of the pg or the rmc, I feel, for me, the only way I'm going to get a live baby is to just keep on going and hope there's a goodun among them.
I really know that's not for everyone, but I don't know what else to do!

Good luck with accessing some good gynae support.

tanny I have everything crossed for you, I really do

worry I actually think there is no system in NI. I am seen as part of a gynae clinic at the hospital. Every appointment I see someone different. And I get different advice They are generally very disorganised and have lost blood samples etc. They have told me that based on RCOG guidlines I won't be offered any treatment.

The only name I have heard is David Hunter. It's possible to see him privately at the Ulster independent clinic. I'm waiting on a rerun of tests before I see him.

Just watched the St Marys documentary . I want to go there. Does anyone know if you can be referred there from anywhere in the UK?

Nearly St Mary's gynae web page which implies they accept tertiary referrals (referrals from a consultant rather than your GP) from anywhere in the UK. phone numbers here I'd get in touch and ask what the procedure is.

nearly - me too! We have the same plan! I couldn't remember his name yesterday but I'm waiting for bloods and then asking to be referred to him. I know he's referred people to Liverpool / St M too. If the consultant won't refer me then I'll go the private route to get to him... He's the only name I've come across for NI.

I had bloods taken in October so I'm hoping to get results by Christmas. I was told to take aspirin 'off the record' which wworried me a little.

Nearly and Worry - pretty sure you can self-refer for private or be referred by a consultant (as Baking said) for St Marys even if you're out-of-area. The only flipping good luck I had about this whole mess is that I live in the cachement boroughs (i.e. all of North & West London) for St Mary's RMC and Charing X's molar centre.
I would definitely get a second opinion on the aspirin. Sure it isn't harmful per-say but as you suggest it doesn't sound like that doc is very experienced with this kind of thing if 'off the record' suggestions are made!

I'm having a horrible day. Aches and pains - on the phone my mum wondered if it was implantation and I know it isn't (no dtd on the right dates due to appt, and other dtd was 'protected') which made me feel down. Just plain old WHOLE FRICKEN WEEK OF PMT. :( I also got myself into a state that I had breast cancer (runs in my family and there's a sweet story 'doing the rounds' on social media about a woman who survived and had a baby but it's all got mixed up in my fevered brain) ... no, I have PMT sore boobies and a bad back. Grump.

Sorry to hear about EDD woes... I can completely relate to that, it's a tough time. My second one is coming up in a couple of weeks (24th Nov), and I'm dreading it - babies are currently popping left right and centre here, and one of my friends is due at exact that time, oh joy.
I have no great wisdom to share as to how best to deal with them - for my last one (end of July) I had to watch the Royal baby leave the hospital, not great - but I was pg again at the time, which softened the blow a little bit... Not sure what I'll be doing this time, I'll def not be pg this time . Slight hope I will be when the 3rd one in March comes round.

But who knows. I just had the results for my progesterone and AMH blood level tests. Mind you, I forgot to ask for the units, she just gave me the numbers, but apparently, I had 49 (ng/mL?) for progesterone on CD21 (which I was told is really good) and 3.94 for the AMH (which apparently is low - but I don't have the unit, could be either ng/mL or pg/mL).
Which confirms what I was expecting - at 41, I am ovulating, but my eggs are sh**. Not sure what to do with this, though. My appointment with the miscarriage clinic is next week, so hopefully, they will be able to discuss everything in more detail (as they also did the scan, DH's bloods and more of mine).

But what are my options if it's the egg quality that's the issue?! Other than egg donation, which I have never considered to be something I could do. Would there be any point to do IVF with questionable eggs, or is that just going to be heartache amplified by the gash in your finances?
Think DH and I need to sit down and have a good talk about all this very soon.

I don't think AMH tells you about the quality of your eggs, more about ovarian reserve (how many are left). It might be sensible to assume that as numbers fall the dodgy ones are more prevalent, but not necessarily - something to ask at your appointment.
Do you know if any of your miscarriages were due to chromosome problems?
There are quite a few people on the TTC on pred thread or assisted conception after RMC thread who could probably answer your questions about IVF. I know some of them have had pre-implantation genetic testing of embryos, in order to replace only those with normal genes, but I guess it depends very much on whether your pregnancy losses are due to genetic issues or something else.

I need some good vibes for tomorrow as I have my booking appointment. I am ridiculously superstitious about it as I actually started to miscarry at booking in my first MC in 2009 - she sent me to the toilet to produce a wee sample and I found the blood that started the whole nightmare off
Since then I've made and had to cancel three booking appointments, so I suppose I should be positive that this is the furthest I've got, but so worried that filling in the wretched form will be a waste of time yet again.