Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

[forestnest]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

Update: I'm booked in to go to Coventry on Monday, have you got any advice or questions I should ask?

Grrr. Just lost a big post.

carrot, glad they are seeing you so quickly and that you have another scan booked.

paws, sorry to hear you had a shit holiday. Totally understand the need to step away sometimes. We're here if and when you need us, but glad the anxiety has lessened a little.

naughtius, I'd probably advise at least getting the bloods drawn for the testing before starting ttc again. You need to be not pg for the clotting bloods, so if you fell pg quickly before they were taken you wouldn't be able to have that test. I suppose you need to think about whether you'd be prepared to try another pg without treatment and without knowing you'd ruled out the treatable things out. We started ttc again after the bloods but before the results came through (although didn't get pg until after they were back), so maybe that could be a compromise. But depends whether the waiting would make you more stressed. After we started again i found i was actually glad I'd had the break (even though it was hard at the time). Whereabouts are you? The coventry protocol is the combination of drugs they prescribe at the Coventry implantation clinic (a self funded nhs research clinic where they test for implantation issues by looking at levels of uterine natural killer (uNK) cells). They prescribe everyone progesterone from 7dpo, then if your pattern of losses indicates it, you also get heparin (clexane) from location scan. If you test high (over 5%) for uNK cells, you also get steroids.

rainbow, good luck for coventry on Monday. I hope you find it a positive experience. I honestly felt like they were the first ones who took me seriously and i left feeling like they could help and would do everything in their power to. Things to ask. If you think you'll have problems getting any of the drugs prescribed locally you may want to discuss how you go about a private prescription from them. I asked loads of questions about the theory behind it, but that was mostly because i was interested and because i wanted to see how similar it was to other theories (ie the immunes camp). They are pretty good at covering things although they were very rushed when i went as they were so busy (probably because this thread has sent dozens of people their way! )

need, glad you've got the clexane. Several people have said they think that's what's made the difference with their successful pgs, due to its cytoprotective effect on the placenta, so fingers crossed it does it for you too

Thanks march.

Hi there Rainbow** and other newbies. Very sad to read your stories andvsending you all love and strength

Rainbow** if you read the small piece of paper squished in the new clearblue digital box (clearly produced due to so many complaints, disappointing at £20 a pop) you will see it says you can get 9 flashing smilies before a static one, because they are measuring a rise in estrogen, rather than LH and you can have 3 estrogen 'peaks' per cycle. You can also go from flashy to an empty circle, as we don't always ovulate every cycle. However, a woman on our thread did get pregnant from a cycle that was just flashing smilies! I won't be buying again, just one more thing to fuck with my head. X

Thank you March, your advice is much appreciated. Like you say I think trying without ruling out potentially treatable and potentially failing would mess me up even more than I am now. We are in Wales so I'm not sure we would qualify for the Coventry he'll but will certainly take your information to my clinic review in the next few weeks xx

Coventry is self referral, so anyone can go. You pay 360 as a one off fee, but that's it (which covers the cost of their research). I travelled down from Edinburgh to go there after running out of options and because i couldn't afford private care. Because it's not in the CARE guidelines some consultants are a bit funny about prescribing their treatment plan, i wish they'd get on and do a full double blind trial! But they have done a scoping trial and found that the success rate of patients with high nk rose from 40% without treatment to 60% with their treatment. You go there for a one off appointment where you have a consultation with one of the two professors, who takes a history of your losses, and then takes a biopsy from your uterine lining which they test for the uNK cells. The biopsy (known as the scratch) also improves the thickness and quality of the lining for a few months. You get your results and treatment plan by email as a letter you can take to your rmc consultant or gp to hopefully prescribe the meds. And you get a follow up phone consult with the prof to discuss the results. You need to be 2 cycles clear of your last mc, then you phone up to book when you ovulate. They'll book you in 7 to 10 days later. It's worth thinking about and is a cheaper option than the full private route. It's not a substitute for the standard nhs testing add they don't do ant of the clotting bloods, so you'll still need to get those done . I never thought for a second that I'd test high, i really only went to rule out another potential issue, but it was high, so i have found (and treated) my issue. Lots of us here/on the fb page are pg after going there.

Hi all, just popping in to say thinking of you all on Baby Loss Awareness day. You are a remarkable bunch of women.

I wrote a little thing, it's here thingsaboutmiscarriage.wordpress.com/2015/10/15/things-about-miscarriage-no-36-hope/

Big hugs to everyone.

Thinking of you all today too, particularly those going through a loss now.

Flen I'm sat at playgroup reading your blog and fighting back tears. Congratulations on your scan. I'm sure it will provide hope to others. xxx

Thank you for all the information Marchgirl that's incredibly helpful. Would anyone be happy to pm me the contact information because it certainly sounds significantly cheaper the private route which I don't think will be an option for us and this might just be our lifeline to getting some answers (as my original post said, the hospital have been very poor in their care and support of us so unless we can maintain contact with good gynae consultant then I doubt we'll get much support over the coming months). Sorry if you've already said but could a gp prescribe the meds needed or does it have to be the hospital consultants? Thanks again for the information I really do appreciate it, having a particularly bad day today emotionally so a light at the end of the tunnel is just what we need (other than a return to my normal cycle!).

Hi maximus, here's a link to the info www.mededcoventry.com/Research_and_Development/Facilities/Implantation%20Clinic%20leaflet.pdf
The contact is right at the end on the final page - Kerri.

Hi Kerri, that's brilliant thank you very much, will have a good read, NM

flen that's a lovely blog so glad your scan went well!

naughtius which hospital are you under? I'm under royal Gwent who weren't great but I did tell them I was going to Coventry and they were fully supportive. I emailed them a copy of my Coventry letter after I'd been and they sent me a prescription out in the post straight away. I have struggled to find nhs miscarriage specialists in Wales so Coventry was the right thing for us.

As for me had my early scan today and all looking good -7w5d was a bit dubious that it fell on baby loss awareness day but so far so good.

Great news flower! I was thinking of you this morning and meant to post but never got round to it.

Big hugs to everyone for baby loss awareness day today. Hope you are all doing ok x

Sorry you're having a low day naughtius. There is hope and light at the end of the tunnel. Kerri is the name of the admin at Coventry who you contact btw. We have made a Google sheet with info about coventry and other investigations. You'll find the link at the top of the stats list on page 1 of this thread. It's a work in progress!

Naughtius I definitely think a trip to Coventry will be your light at the end of the tunnel, there are so many success stories on here about it. My GP prescribed the meds (although he referred me to a gynae consultant to check as he was clueless about them). However I wasn't under a rmc consultant as only had 2mcs but I think it's possible they would prescribe too.

Flower that's great news, I'm so pleased for you!

That's brilliant news Floweroct! Would it be OK to pm you a bit later?
Thank you to everyone for their advice, planning to talk to dh as soon as he gets home, it has been such a relief to A find this thread and B hear that there are alternatives to out our price range private care and the crap care we've been provided up until now.

Yeah of course it is naughtius just pm me any questions you have!

Thinking of all of us tonight xxx

Thinking of all of you this evening. Thank you so much to all of you - you have helped me through some of the worst weeks and months of my life. Xxx

Thank you march, that's very kind of you x

Hi I need help URGENT
Is Coventry open on a Saturday or does anybody have any contact details for them other than kerris emails or 024 7696 7528?
After speaking to Kerri last week about my ovulation tracking I had been getting flashing smileys on cbfm since 9/10/15 but no peak yet, she booked me in for tests in Monday. I have just been for an internal scan sent by my doctor to check everything is ok and the sonographer said I look like I will be ovulating within the next 36hours, I'm just worried that if I go to my appointment at Coventry on Monday I will be at the wrong point of my cycle for the tests!

Hi rainbow I don't think they are open on Saturdays. I'm guessing your best bet will be to call first thing on Monday for advice and to possibly delay the appointment if they think you need to. I think they usually like to see ladies a week or so after ovulating so it might be they just move your appointment to Friday. Do you have far to travel to them? Try not to worry (which is probably easier said than done). They are really nice there so I'm sure something can be sorted out. I don't have a different number for them sorry.

I would agree, rainbow, call them first thing Monday and they may want to rearrange for a week's time. Have you taken an ov test since?

Thanks for the relply
Iv not taken a test since because I ran out of tests but feel I ovulated last night as I had a pain in my side. I'm going to ring first thing Monday morning and put the appointment back I was worried about rearranging work but Iv managed to sort that. I'm going to try for the Friday as I think the following Monday would be to close to when af is due, at least this month I have learnt I ovulate a lot later than I originally thought x

Don't worry rainbow, as Diddly says they are really nice so will just probably move it to Friday.

Hello everyone. I've had 3 early mcs this year and I think I'm having the fourth right now (light positive test yesterday, major period pains right now - this has happened before too so it's only a matter of time).

We've been referred to Siobhan Quenby later this year and while I'm so grateful to the NHS for helping us look into it all, I'm just feeling numb at the moment. And a bit lost.

Just thought I'd say "hello" and to all, and to ask you to wish me some luck as I spend yet another day trying and failing to concentrate at work!!