Recurrent Miscarriage Support thread 14 - tests, treatment, trying again

[Justonemoretime]

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 :)

newtothis they can be a bit slow but did respond to me eventually. My best success has been by emailing mr Raj's pa directly. I will pm you her address. Alternatively Mr Rai (who I think is the only st Mary's doctor who takes private patients) also has a clinic in harley street and they are easier to get through to.

Sorry, PMing doesn't seem to work but Raj Rai's PA is Mary Stanton and her address is [email protected].

The Harley Street clinic is here:

www.92harleystreet.com/about-us/meet-the-team

Hope this helps - but I did get a response on their voicemail within a few days (though not before I'd left another several) so don't know what's happening there.

I've no experience of London new but hope you get sorted soon.

I saw the consultant this morning. IUI will start when cycle after next arrives in mid January. Just to confuse things he suggested baby aspirin was worth trying .

I'd actually go with this consultant over the rmc one. He works in the rmc anyway and has conducted research of his own on mc for what he said was the leading research group (he told me the name but I've already forgotten).

I'll also be put on dalteparin from bfp (fingers crossed we get one) not heparin, it's a low dose equivalent with fewer side effects. Still daily injections though.
I asked about the risks of anything happening earlier and he said earlier mc were more likely to be chromosome abnormalities, if it had been the blood clot it's usually the case of seeing an embryo and a heartbeat but then losing it. So on that basis mc 1 could have been a blood clot and mc 2 just not viable, as it didn't get as far.

So, I have a plan. Just treading water until January...

Glad to hear you are feeling a bit better flen - taking a day off can do loads of good, just having some time to yourself and not having to worry about work stuff. The fallout of an mc can be brutal, and unfortunately, it so often hits you out of the blue, even when you think you're doing OK. I've been there many a time!

tanny Hope you are feeling better soon, tummy bugs are evil at the best of times, but so much worse when you pg. Make sure you drink enough!

Good luck for everyone having a scan this week! I feel we almost need a spreadsheet tracker for who is having a scan or apt when . Fingers crossed it'll be good news all around.

Newto Sorry you find yourself here, the club that no one wants to be in. I don't have any advice about how to deal with the RMC clinics, but lots of others on here will be able to share their knowledge.

Well, we have put the tree up at the weekend... But I agree with those that I'm not really in a great Christmas-mood. This will be my 3rd Christmas in a row that comes with the mc baggage, and with each the number has increased. It just sucks. I would have no problem just staying at home, having a nice a quiet days with DH and DS (think pyjamas, sofa, DVDs), but our families are having none of that. We will be going to my mum's in Switzerland this year, my brother and sister are coming, too, so it will be rather cramped... DH's family are having a big get-together this Saturday, but after getting a lot of grief for not being around at Christmas, I have decided to put my foot down and keep my hairdresser appointment instead. I'm sure there will be lots of raised eyebrows about this, but I'm not asking, and DH hasn't said anything of what his family have said when hearing I'm not coming (he and DS will be there).
They caught me during a spell of particularly bad mood, so I decided to stick to my guns, be selfish and treat myself. Surely I deserve this after the year I've had?! Happy to catch up with all of them any other time, I just won't do this Saturday.
(Have suggested the 'just us' option for Christmas next year to DH - he wasn't keen...).

Other than that, I am now in yet another 2ww, sigh...

Hello all. I wonder if I could ask your advice please? Have received so much support from Mumsnet while have been on this TTC journey. Usually to be found on the TTC after a MC threads.

Firstly, am so sorry for all of your losses. This has truly been the hardest period of my life and I think anyone who has gone through miscarriage or fertility issues is stronger than anyone who hasn’t will ever know.

Bit of background. 37, TTC no 1 for 20 months. I have had two losses, one TFMR following an Edwards Syndrome diagnosis in January 2014, and one MMC followed by ERPC in June 2014. Despite it ‘only’ being my second loss, they offered me karyotype testing on that one, which came back as Trisomy 22.

I have been offered an appointment at the Recurrent Miscarriage Clinic, which is this Wednesday. I called them to question whether I needed it (given the losses were two unrelated chromosomal problems) and I didn’t want to waste an appointment someone else could use but they were quite sure that I should come in. Can anyone tell me what I should expect at the appointment and any questions I should definitely ask?

Related to this, I’m getting more and more worried that my body is somehow ‘damaged’ after the second erpc. The first time I fell pregnant on my fifth cycle after coming off the pill. After the TFMR I fell pregnant on my third cycle. Its now been six cycles since last MC and nothing. Is this something I can ask them about or do I need to go for fertility referrals? Is it possible for your body to suddenly stop ovulating or be unable to fall pregnant after a miscarriage? I’m starting to go slightly mad with the waiting and worrying. I should have a six month old baby for Christmas, or else a 7 month bump. Instead I’m not even pregnant again. Any stories of hope telling me not to be silly, or even experiences where something was wrong and what questions I should be asking, would be really gratefully received.

Welcome monten and sorry you've had such a bad time. The rmc appointments seem to vary massively from area to area. at my appt (in Edinburgh) they just discussed possible causes and she took lots of blood to test for all the clotting disorders and even though it's not standard nhs practice anymore, she took blood for karyotyping me and dh as we didn't get a result for the foetus. As you have had a result for this which had shown a chance chromosomal condition they may not offer to karyotype you and your oh as Any issues should have shown up on the foetus. You should also be offered a scan for any uterine abnormalities like a septum. You might be offered testing for thyroid,but this isn't standard. Others have had the bloods taken first and the rmc appt was to get the results, but I will just get results by phone or post. I was also prescribed progesterone. 400mg twice daily from bfp. This seems to be fairly standard.
It's great that they are offering you this after 2, as most have to wait till 3, so I would take whatever they offer.

Whilst I Can't comment too much on times taken to conceive, I know that the average is 6 months, so I don't think it necessarily means you have a problem, but if you are worried then it wouldn't harm to speak to your gp about a referral. It's so hard to know as the stress of ttc knowing you'll have the dread of worrying about mc once you fall pregnant definitely has an effect. Have you charted your ovulation or used opk at all?

Oh, FFS. Another pg announcement at work, this time in my immediate team

Hi monten I recognise you from the ttc after mc thread!
2 of my 4 mcs have also been diagnosed due to chromosomal abnormalities (trisomy 2 and 18), and like you, I am currently struggling a bit to fall pg again (although I have to admit this is most likely my fault due to struggling with dtd...).
I am not under any mc clinic, as for me, it is most likely age that is the contributing factor for my mcs, nothing else has ever been found (with the standard NHS testing). So I'm not sure what you can expect!

However, I am planning to make a private appointment at my local fetal medicine centre, and what I really want from the consultant is hard facts - how likely is it really that I will ever have a successful pregnancy at 42 (well, 43 in January), given that I have now been trying for over 2 years? Am I barking up the wrong tree thinking that I even have a chance? Is there anything else that I can/should have tested? Or anything that I can do, other than taking billions of supplements, losing weight, have a healthy lifestyle etc. that can increase my chances?

Basically, I want someone to sit me down and give me solid, research-based data. I am no longer that interested in their personal opinion (but of course I will listen if they have anything to say) - I want to know where I stand and if I have a realistic chance of this happening at all for me without any major interventions. The consultant after my last mc (which was the one with Edward's) was very positive and said that I have a 'very good chance' of a successful pregnancy, but to be honest, after 4 failed attempts, I am struggling to believe this. All this has taken a massive toll on every aspect of my life, so I feel that I need specific and detailed information to decide if I can and want to keep going.

Sorry, this might not be that useful for your particular query! Have you ever had your hormones tested at all after the mc, or any other tests? It can sometimes take quite a while for it all to go back to normal... Are your cycles regular? I noticed a definite change in mine over the recurring mcs - they have become shorter, AF doesn't last as long either, no longer painful etc.
There are many other factors that can contribute, clotting issues, thyroid, uterus issues, etc.
With chromosomal abnormalities, though, there is really nothing much you can do, unfortunately, but if you are worried about not falling pg, then I would definitely bring this up.
Good luck!

Bootles- don't worry I didn't think you were being rude. Made me laugh if anything!

Feeling better after AF finally arrived. Seem much calmer and chilled...for the moment.

Understand why some people aren't looking forward to Xmas. I have to say I am only because it means the new year is almost here and I'm really looking forward to 2015. Again another person defining the year due to rmcs

marchgirl, hello! I've been on this thread and just saw your comment about Edinburgh Recurrent Miscarriage Clinic. I'n Edinburgh based too, and have my appointment booked for middle of March (I am also on the cancellation waiting list). Did you find them helpful? And how is your journey going now? (sorry I can't scroll back to find your stats without losing this message!)
I'm also in the system to see their fertility team. So I presume that these two fields of medicine cross over and I may not have to go the RMC if the fertility team put me on some sort pf treatment plan for next pregnancy.
Can you give me a wee round up of what to expect, as sadly I seem to be the only one in all my friends who is having issues. Everyone else just brushes up against their partner and has a healthy baby 9 months later.

marchgirl thanks for all the info. I'm in London (I used to live in Edinburgh tho - beautiful city). A scan would be good - I'm paranoid about adhesions or Ashermans syndrome having had two procedures in quick succession. I actually went to a private consultant to get checked out (or so I thought) - what I actually got was a scan that looked clear but apparently I need a hysterocopy for a definitive yes or no - and that costs £5000! My periods have been a bit lighter since second mc and its because of that that he is recommending a hysterocopy. But I don't know how much of that is in my head - you know how easy it is to imagine things with dr google. I can't afford to spend 5k to find out!

Hi cloudjumper! Thanks for your reply. I know exactly what you mean. I want to speak to a consultant and I want to know cold hard facts about how likely it is I will ever have a healthy baby and if I need to worry about the fact I am still not pg again. My af has changed too - used to be able to set my watch by it, now it changed by up to 5 days. Last week I ovulated a whole 6 days earlier than I was expecting to, which would put me on track for a 27 cycle, a record. I just feel like my body doesn't know what it's doing anymore. If I'm not lucky this cycle I will go to gp as that will be 6 months. I really hope you get some answers at your appt. and we all get our healthy bfps soon.

Hi Monten, I know you a little from the TTC after MC thread, hi hi!

Honestly after my ERPC in Aug my cycles went batsh*t crazy. Cycle 1 was 30 days (so far so normal), then just as I was getting ready to TTC, AF2 came at DAY 13 WTF? (Full flow, not just spotting). Then AF3 at 28 days. Then my last cycle (the one I conceived on) I apparently ovulated twice, once from each ovary. I had a feeling it had happened as FF put me ovulating twice and it was confirmed by sonographer - corpus on both sides. Weird. AF has been way heavier and more painful since the erpc. I guess what I'm saying is that it's pretty normal for our bodies to go a bit weird after all the hormonal changes (I won't even get started on SpotFest2014 going on on my face) but even when the weirdest things happen you can still get pregnant.

As to all the stats I've been trying to make myself better by reminding myself that even though I have a slightly higher chance of MC'ing this one THAN THE AVERAGE WOMAN I still have a much higher chance that it will work out than it won't. We all do! xxx

sizethree I'll pm you so I don't bore everyone else with Edinburgh chat/my story!

flen, hope you're feeling a bit better today lovely

charlie I am glad to read about the crazy, it makes me feel better about this weekend and the mentalness!

Thank you march, today I have gradually gone back to feeling more normal. Which is a massive relief.

cloud I completely get where you are coming from in a) sticking to your haircut guns and b) wanting treatment based on research. You've got to do what you need, and that's part of the frustration about the lack of hard data - hard to know what to do for what you need.

Hi All, sorry I've been a bit quiet - last week was my danger zone and I kind of thought you wouldn't need my neurotic panicing going on! We had a scan today and one happy and healthy baby with wiggling arms and legs was waving at us. Still not out of the woods but the consultant has said two more weeks and we can relax a bit.
Monten how're you doing - these guys are great! I'd definitely go for the RMC - if nothing else you get lots more support through future pregnancy in regard to scans etc. It's nice to see your name :)

Boozle I am so glad to hear that (the scan, not the panicky bit). Yay!

boozle that's great news! But you are v welcome no matter how neurotic or panicky you feel, who can understand that better than us lot?

Yeah boozle kicking scan week off with a bang.
cloud fuck'em. Go, get your hair done, get a nice conditioning treatment, get your eyebrows threaded and a mani/pedi. Then shake your fab mane at them and give them a perfectly manicured two finger salute.

Hi boozle!! How amazing, congrats, you must be thrilled. So nice to see a ttc thread grad. And you too charlie how are you getting on? Sounds like you've had a scan already, really hope it's all going well.

Just read back a bit and see Smithers familiar face just so happy to see you got your bfp. Fx for your scan this week

Hello Monten I recognise you too. The rmc will most likely test you for thyroid, clotting and insulin problems, plus a scan for womb abnormalities. You're right that in your case it doesn't sound like these are to blame but no harm in being tested, I suppose, and they will then monitor you in early pregnancy.

I know all too well the pain of ttc after mc but hang in there. There is no reason to think anything is wrong. One thing that struck me though was your irregular cycle. Have you been tested for pcos? The scan should pick this up but depends when in your cycle you have it. Might be worth asking your gp for a hormone test.

Good luck!

Yeay boozle! Congrats! Xx

Boozle- fab news x

Great news, boozle!!

Boozle