Recurrent Miscarriage Support - tests, treatment, trying again - thread 10

[bakingtins]

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

Can we start the thread with a recap of where we are all up to again, please?

Tiny it's time to do the baby dance. Enjoy!!! X

Hello everyone. I am new. I have just found out I have had my third miscarriage. Feeling a bit shocked and scared at having to face up to the fact it is unlikely to be an unhappy coincidence, although I do have caused dd, nearly three, who was born after an uncomplicated first pregnancy. I have a million questions but the epu won't talk to me about the tests they will do till they formally confirm the miscarriage next week. At the moment they are saying I could just have got my dates wrong and be much earlier than I thought but I know that's not true. Please could someone tell me what the possibilities are, what tests will be done, how long I would expect to wait on the nhs and whether I have any chance of having a dc2? Thanks everyone and sending you lots of warm wishes in return.

ahrgh longest I HATE when they go on about how we might have the dates wrong... we are not stupid!

my NHS referral was a while ago, but i had MC3 in the end of November and my first appointment at St Marys' RMC was in March (I think) and in May I had the results and conceived my DD...

Hi Longest, so sorry you're here...

I think it is such a postcode lottery tbh. I was referred by my GP once I hit 3 mcs, but I had a general Gynae consultant at first, who referred me on to someone with more specialism in the area. I continued to have mcs (now have a dizzy five under my belt), and it seemed that I was referred for more tests after each one.

I found that the service I received improved dramatically once I was seen as an interesting case, which I found fucking frustrating to be frank.

The route that a lot of us seem to have taken is to pursue all the NHS tests, where they look at hormone levels, clotting issues and infections etc, scan to make sure your uterus and ovaries are in the right place/size etc, and may also offer karyotyping of you both to look for any chromosome issues you may have. They only find a cause this way in 50% of cases, and if nothing is found (like me) then you'll be told you're lucky!

Quite a few of us here have now explored NK cell testing, which is not NHS treatment, so you have to pay, but that feels a bit last chance saloon for some of us.

The cumulative effect of all the mcs can really take it out of you, both physically and emotionally, and I have benefitted enormously by taking some time out of ttc. This helps with all the testing too, as they can get some nice clear results.

Hope you and all our newbies find the help and support you need. We are a friendly, if slightly jaded and world weary, bunch.

Tiny only a few more days and it's back to a good book

And I should have said that people like lovely Baking keep us going, both with her font of wisdom and with the wonderfulness which is her new baby, born with the help of nk cell treatment a month ago..

Oh, and Just - dizzy spell... Pfff...

Ah tanny stop it, you're making me

longest welcome to the thread. It's not a club any of us wanted to join, but actually accepting (and more importantly having HCPs accept) that there is a problem and you are not just spectacularly unlucky, and getting some help to hopefully reach a diagnosis, can be a very positive step. Mary Regan's book "Miscarriage - what every woman needs to know" is a good guide to the NHS tests/treatments.
I gather from your description that you think you've had a MMC - baby measuring behind/not viable for dates but you have not physically miscarried yet? In that case I would pursue saving "products" (sorry ) for genetic testing. It makes a big difference if you are losing normal embryos because of an issue with you, or if you are having chromosome problems. If you have an ERPC you can ask them to save and test material, if you end up miscarrying naturally try and save whatever you pass with a sieve and submit it for testing.

Thanks, Tanny :) (dizzy spell: check ;))

Welcome to the club that no-one wants to join, Longest. So sorry that you need us, but glad you've found us. Sorry, also, that you have to spend the week in limbo.
After my mmc, I was referred by the GP to St Mary's, London. They can do that (as opposed to local services), but it did take a few emails and phone calls to various secretaries to get the wheels in motion. Once you're in the system, you should expect to get an appointment in about 3 months. They'll ask you not to ttc before they test you, to make sure you get accurate results. Prof Lesley Regan's book here is an informative read.
I'm blogging about my experiences, so feel free to take a look if you're interested justonemoretimeagain.wordpress.com/, and there are other good blogs out there. Avoid Dr Google, though, unless you have a very big pinch of salt handy, or you might freak yourself out!
On a practical note (sorry, not very nice), you are entitled to have the 'products' (sorry) tested for genetics this time since it is your third MC. Insist upon it. That info will be really helpful in line with further testing you will have.
Good luck!

just your blog was linked on the miscarriage association forums.

BTW my one is ninelongmonthsandbeyond.blogspot.co.uk/

but i wrote a lot in pregnancy, the first few posts tell of all my mc and investigation story, but then just didn't have the time or commitment to continue so it stopped now...

ninelongmonthsandbeyond.blogspot.co.uk/ linky link

Cool, Thanks Tiny, I'll check it out :)

I'm just dipping my toe in - I don't really fit the criteria of 'recurrent mc' as I've only had two mc but I hope you don't mind as I'd really appreciate some advice. I'm going round in circles and a second opinion would be amazing.

I've been ttc #1 for 2.5 years now. First mc last Sept following a clomid bfp, now second mc following an IUI bfp. No NHS tests further to the standard fertility tests we've already been through as I've only had 2 mcs and I'm 'probably just unlucky'. No diagnosis for not getting pg naturally other than 'unexplained infertility' although I think ovulating on cd22 and having a 7/8 day LP isn't exactly helping. I accept that mc is horribly common, but I can't just keep trying to see if it will work next time, it doesn't happen without help and we've got two IUI and one IVF chance left. I've been trawling mn and google generally, reading about tests and nk cells etc. I have a lot of allergies, which is making me more nervous about the potential immune issue.

Do I:

A) accept I'm just unlucky, go for the next IUI/IVF and hope everything works and baby sticks. More tests is just more stress, we don't have lots of money to throw around and chances are everything is fine.

B) go for private tests on the basis that if it takes all our remaining chances to get pg, then I mc, we're at the end of the road and have to face that our only option is then adoption. I don't want to have to cope with the 'what if testing had brought up something treatable before we used up our chances?'

C) ?

tiny I couldn't find the parts of your blog related to mc, can you direct me to a month/year? Do you have a link for just's blog that you mentioned?

Scrap that, I'm blind, sorry . I'll stop multiple posting on a thread I'm not supposed to be on anyway now...

Barking, welcome. Sorry you find yourself here. The 3mc thing is an NHS thing and is down to cost. We don't mind at all if you hang out here and ask us stuff.
Your cycle does sound 'unhelpful', maybe acupuncture might help? I have it, and its relaxing. I have a regular 'standard' cycle, but I have heard other ladies say it has fixed their cycles.
Maybe also ask you GP for basic bloods like clotting and autoimmune stuff? It might throw some light. If you want to go private, maybe try Prof Quenby in Coventry for a uterine biopsy for nk cells? You don't have to have had 3mc, and it costs £360.
My blog link is further up the thread. I've not written all about my testing yet, but plan to get to it soon.
Good luck with it all.
X

Barking your story sounds really complex, and I'm sure you can get some steers here, but I'm not sure. I'll have a think...

And we're not rigid about our RM criteria as the NHS. I joined this thread when I was 2 down. Like you, I think I knew I would need more support to try again.

Thanks just, I've been reading your blog. The facebook bomb particularly resonated. After my first mc my cycles went AWOL altogether and I started acupuncture after 3 months of waiting for AF to come back. AF did return, and for a couple of cycles pre IUI ov was slightly earlier but LP only stretched to 8\9 days and I started getting lots of pre AF spotting I hadn't had before. I've been having acupuncture for 6 months now along with Chinese herbs, and it's an ordeal rather than a relaxing experience for me (on my third acupuncturist so it might not just be them). Pre/during IUI then through early pg I continued with the ACU but can't bear to go back now. Not only did I find it unpleasant and a hassle to fit into my day (I was going twice a week during IUI) I just cant afford to keep throwing money at it.
When we start the next IUI I'll go back, but to a new lady another mner has recommended!
I'm back at the clinic for a scan on Friday to check everything has gone. I need to write a list of questions to ask the nurses while I'm there, number one being whether we'll get an appointment with the consultant so we can ask him the questions! I hadn't thought of asking the GP given I haven't had 3 MCs. Last time I went to see them was when I hadn't had AF for three months and the gp I saw wouldn't prescribe provera so I could bring on a bleed and try clomid again, she just referred us back to the fertility clinic.

Thanks for the welcome tan

August 2011 bits.
It's in 3 parts...

I can link to the relevant posts when not on the phone...

Thanks everyone. This has already been really helpful. It is still puzzling me why any problem didn't manifest itself till after dd, who is now nearly 3. I am 33 and dh is 34. I have a 42 day cycle which is weird but scans have never shown up pcos. I seem to conceive every third cycle, which is about every 5 months.

My last mc was an mmc discovered after I started bleeding at 11 weeks. I measured 6 weeks and no hb. Today I am meant to be 7 weeks (9 by lmp but this is always out because of my cycle) but measuring more like 4-5. I have just started bleeding properly so will try and save products. My first mc was a so-called chemical pregnancy but is on my record and they do seem to be counting it.

The only other things of note are that my dates for dd suggested I must have conceived her just before my period was due, and I didn't get a bfp until I was 8 days overdue which has always made me wonder about my luteal phase but other cycles don't seem to have been the same. Does a short lp cause miscarriage at around 6 weeks or would it prevent implantation in the first place?

Finally this is probably unscientific woo but in my direct maternal line there are no boy babies in 4 generations and my grandma was one of 5 girls. My mum and her twin sister both had difficulties conceiving and suspected multiple early miscarriages but didn't ever seek medical advice for over 10 years for some reason, when they both finally conceived (girls) naturally and my mum then had my sister 2 years later with no trouble, though her twin never dud conceive again.

Does any of this sound familiar to anyone? Sorry for the epic post, most of which is probably irrelevant waffle Wave to fellow newbie barking. Hope you find some answers too.

Hi guys!
Took a last minute holiday and have been on denial land for a while which was nice!
I'm sorry to say hello to some new joiners too!
Will have a read and catch up tommrow

Wasn't meant for the ! After the new joiners part btw
X

Hello fellow newbies so so sorry about your loss. hugs

Longest, how are you tracking your ovulation bbt/opk? I ask because with such a long cycle it can get confusing without it! The cheapest approach would be bbt with a cycle that long. It would make clear if you in fact have a LPD. There are studies suggesting that the body can create antibodies to warn off boy children but this is after the first born male. I only saw one study floating around Dr. Google. I have a first born male that's how I bumped into it. Vitex sorted out my cycle if you haven't tried it. Its very cheap and worth the try in most cases.

How is everyone else?
Some of you will be testing soon?
TINY 'O' day yay!!! "and so it begins"

My apology in advance Longest, I didn't mean to Long cycle to be rude or blunt. I just reread and it just didn't sound warm enough! sorry

Thank you coco you don't sound blunt at all. I haven't really been tracking it tbh. I tried with sticks but could never catch myself in the act as it were, and I had 2 blood tests which didn't work either but then I got pregnant with dd so didn't worry too much. Then since dd I think I know when I am ovulating now though because I feel hot and get lots of cm (tmi- sorry) and this generally seems to be 2-3 weeks before af is due which is about right and fits with my bfp dates in the recent pregnancies, but not with dd, which is why I have continued to wonder. Also when a teenager I used to get quite a lot of spotting, like a light period, 3 weeks into my 42 day cycle. Then I was on the pill for many years and since coming off it the 42 day cycle has returned but not the spotting. What is bbt please and how would I source vitex? Sorry, I think i have been in denial about having proper fertility issues for too long. I have been to the gp a few times but generally been patted on the head and sent on my way.

I am in London but st Mary's is not my local hospital. Sounds like I should be asking for a referral there? Haven't ruled out a private consultation or two but is it best to be patient re the nhs in case there's a long and complex road ahead?

Lots of us travel in for St Marys as they are one of the top RMC hospitals. If you're near by, definitely try to go there. X