Recurrent Miscarriage Support Thread 15 - tests, treatment and 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 :)

hi Ladies - i forgot my log-in details (jetlag brain) so have had to wait til i was back at work to auto-log in.
I was on the last thread, i had just joined to say all tests had come back normal and to get some advice on whether to see prof quenby and whether it would be logistically possible as i was going on holiday and the only day i could see her was the day i flew back to this country.
Fast forward to now. So I forgot to take my OPK's on holiday so i couldnt see prof quenby when i landed, so the plan was to be careful on holiday and go this month instead. Also i was extremely ill on the day that i should have ovulated thanks to a suspected spider bite. So we were careful like i said but it turns out not that careful as i am now 4 weeks 5 days pregnant and terrified. I have my cyclogest (200mg twice a day) and my 5mg FA which ive been on since June/July - are any of you taking asprin? My consultant was dismissive and said it would do nothing since my clotting tests were normal, i know you ladies will appreciate that i want to do everything i possibly can.
Im sorry i havent read through all of the below yet - i need a big catch-up but i hope youre all very well.

Hi sunandrainbow I could've written your post myself

38, no kids, mc in May 14, August 14 and I had an ERPC Saturday night for mc number 3.

Can I ask what made you decide to be at work? I'm at home recovering - where I very much plan to be all this week.

I really hope you are ok. Please don't take too much on and be kind to yourself

Hi Brummiegirl, i remember you from a pregnancy thread when I was panicking at having lost symptoms. Really hoped that we would both have positive news but sadly see we are both on here now. My work are pretty unsympathetic regarding sick leave - after my first erpc I did tell my boss I had to have a small operation and would be off a few days and by the next morning he was phoning and emailing asking where I was! We are also going through a restructure at the moment so I feel a bit vulnerable taking time off. Might call in sick tomorrow though as am feeling less than useless sat at my desk trying not to bulb! X

Hi sun. So sorry to hear your sad story. The ladies here are all lovely and I couldn't have managed without their support and advice over the last few months. Hopefully you will get a result for the tests on the foetus soon.
What tests did they do last time? Was it at a rmc clinic or just with your doctor? Have they prescribed progesterone for you? That seems to be fairly standard these days although the results of the promise trial (testing the use of it in early pregnancy) are still not out, as far as i know.
Are you sure you're ok to be in work? It's still very early days and if you can't cope yet then give yourself a break and take a bit more time off.
I totally understand the need to try again ASAP. That's how I felt after no 2, but it turned out I wasn't ready and no3 hit me really hard as a result. It's different for everyone but a little break may help you to get your head together.
I think you have to be 2 cycles post mc for Coventry tests so if you go down that route it may take the pressure off a little to know that you have to wait for that. I found waiting without a reason very hard to do (and even waiting with a reason almost as hard, but it was slightly easier)

Congratulations on the bfp ourday. Maybe that relaxing holiday vibe worked its magic! Completely understand the dread of a new pregnancy. But you have your plan in place and if your testing was normal then maybe the cyclogest was the missing link that will make it work this time. Keeping my fingers crossed for you. The latest research suggests that taking aspirin 'just in case' is not such a good idea, as it can impede the implantation process in some cases where there is no clotting problem diagnosed. I think just had done some research on this so I'm sure she's point you in the direction of that.

Thank you March i appreciate your reply, i have read some of the same too. I know my consultant wasnt keen on the idea so wanted to see if anyone else on here had a consultant that maybe thought it was a good idea. With MC#3 i was taking it 'just in case' and i did get further than before and had wondered if the aspirin contributed. But at the same time i dont want to do any harm. Wish i had all the answers for us all

It's not inevitable, sun. I am 19 weeks pregnant after three mcs and no treatment but I am glad I waited to get some things ruled out before trying again as the idea of just doing the same thing over and over and expecting something different to happen terrified me. I think I have a hormonal issue that interferes with implantation. There's not a lot to be done about it but at least knowing that I was doing all I could and that the cause was one that reduced my chances rather than made it impossible enabled me to try again. If this hadn't worked out though I would have tried coventry next. Just wanted to try once after the st Mary's go ahead before introducing a competing opinion.

Congratulations ourday. I understand the nerves but have everything crossed for you. Fingers crossed the progesterone is all you need for a different outcome. I would avoid the aspirin. The latest advice is that it's a bad idea to take it if you don't have a clotting disorder as it can interfere with implantation. Heparin is thought to aid the placenta but tbh I have no idea how you get that prescribed without a clotting disorder except by visiting coventry. I haven't taken it though and all is well so far so fingers crossed it is the same for you.

Thank you longest i will probably give it a miss then. So glad to see things are still going well for you.

Congratulations oneday, may this be your day

welcome sun sorry you find yourself here but glad you found us. It sounds like you and brummie are at v similar stages, so the advice she's been given would apply to you also. I'd strongly suggest taking a break to regroup, waiting for the results of genetic testing and if you have normal bloods and normal genetics thinking about Coventry (for which you need to be 2 cycles post MC and not pregnant) I understand the ticking clock, I was nearly 39 when I had my last MC, but it's another reason to get your protocol right before another attempt.

ourday congratulations! I agree with the others about avoiding aspirin. I hope it goes well for you. Do you have an early scan coming up?

Thank you tinytear i hope so too

Bakingtins i have, its on the 14th of Jan. Im dreading it, im sick of the sight of EPAU now and some of the nurses are really awful. I had a battle with one of them when i went to get my pessaries: she made me take a test which was fine but i wasnt warned so had already been to the toilet! So after that she said she had made the scan appt for Feb (cant remember the date) so i told her that the consultant said i could have weekly reassurance scans from 6 weeks and the date she had given me was 10 weeks (past any pregnancy point ive ever got to!) so she said 'yes thats 6 weeks from now' so i tiold her i needed one 2 weeks from then since that would be 6 weeks - so she rolled her eyes(!!!!!!!!!!!!!!) and said 'yes but we dont have any proof that youre 4 weeks' i had to argue the point and remind her that she had a positive test meaning i must be 4 weeks and this wasnt exactly helping the relaxed mentality im meant to be having, she finished off with 'fine i'll change it but i didnt have to make this appointment for you, you know' i lost my cool at that point and told her to forget it and do it myself and i couldnt believe her attitude, she promptly changed it. There are so many nurses like this at our EPAU, dont get me wrong tthere are some that are very emphatic and helpful but experiences like this totally put me off

Welcome sun, so sorry for your ordeal. Recurring mcs are soul-destroying, at some point we have all wondered/are wondering if it will ever happen... Hope that you are being looked after, take it easy for now and try not to worry about ttc. Don't go to work if you don't feel up to it - I would consider telling your boss that your absence is pregnancy-related, as this does not count as sick leave.
Now that you have had 3 mcs, you should get the investigations - have the EPU mentioned anything about this, other than the testing of the baby? Blood tests for yourself and your DP, a scan etc. to see if there might be any issues that could contribute. As with everything on the NHS, these things take time, so you might want to ask your hospital what you can/need to do to get the ball rolling. It is different in every place - for me, my EPU automatically initiated the testing after the third mc, others have had to go to their GP to get a referral.

Congratulations ourday! (Did you have a name-change, too? Just wondering...). Sorry you have had to deal with such an unsympathetic nurse - it always amazes me how EPU staff can be so callous and unkind, after all, they see people like us all the time and must have some understanding of how we feel! Completely understand being sick of the EPU - every time I have to go to mine, I keep thinking how I shouldn't have to be here...
If you are getting the progesterone and do not have a history of blood clotting issues, I would stay clear of the aspirin, too - at this point, the progesterone will be the most important thing to help your pregnancy along. Will you be getting heparin as well, do you know?

I'm starting to get apprehensive about my consultant appointment on Thursday. My plan is to start the list of questions that I want to take with me today - but I am not keen on getting all the books out and re-reading, looking at stats etc.
I am scared that he will say something along the line that I might as well forget about another baby at my age I'm now 43 (as of Saturday) and know that the odds are not in my favour . And my mc history seems to confirm this... Sigh. This is were I am happy to hear stories about successful pregnancies of women in their forties, if you have any!

In fact i dont know whether to put it off. The scan will be 6 weeks exactly, i might change it to 7 weeks. If i was to have it at 6 and it turned out to be too early to see anything i think i would worry myself silly.

sun sorry that you find yourself here and please be kind to yourself, sounds like a few more days off work might be in order. Whatever you decide, good luck.

I felt exactly the same after MC number 3 that I just wanted to jump in and try again. We decided to wait until after testing had been done locally and actually, it was so good for me having that enforced break. For about 3 weeks I felt really like we were missing out and should be trying. The longer we waited, the more I realised that I was getting back to being 'me' and not spending every waking minute thinking about what could have been/might be with pregnancy etc. We got the all clear to try again in December when all tests were negative but I actually wanted to wait a bit longer by that stage. See how you go but it's been 3 months for me and I feel like a different person and so much more ready to face everything that may come this year. I know it's scary when the clock is ticking but in hindsight, those 3 months for some mental wellbeing are so worth any possible delay.

Congrats oneday, hope you had a lovely time away and this is the start of a lovely 2015 for you Sounds like your have your work cut out with EPU, glad you have a scan booked though.

Hope the first gloomy January monday is being kind to everyone. Thinking of those of you with recent losses

Sorry, ourday not oneday!

hi cloud, no my username is still the same. I was only on the thread for a couple of days though and then i was off on holiday. Thank you for your opinion on the aspirin, thats exactly what i wanted: everyone elses point of view.
I was the exact same just before my meeting with my consultant, i had pages of books highlighted and questions and then in the end i didnt take it. Please dont worry about your age, in my relentless search on miscarriages i was on a website where a lady had worried that her circumstance was related to her age and the consultant (sure it was Mr Shehata) had really set her mind at rest about it, im sure yours will too

Cloud, I am 41 and Tanny is 42!

And on my birthboard for my dd there is a stupid Wendy queen bee woman who had 5 children, two of which in her 40s, who says stupid things about only children... Grrrrrrr

Sorry cloud forgot to answer, no herparin - he said there was no point in that too! I have asked for a test now im pregnant to check for any clotting disorders that will only show when pregnant - hes meant to be coming back to me today.

Thank you bythesea i hope it is too so that i can put rotten 2014 behind me.

welcome sun sorry that you find yourself here too

Sorry everyone - i have another question, has anyone paid to have the sticky blood test? I asked the RMC nurse to ask my consultant but instead she asked him for thrombophilia which hes in turn said they wont do whilst im pregnant, she will now ask for antiphospholipid syndrome testing on Wednesday when hes next in clinic. Might just try and arrange myself rather than all this back and forth frustration

Hi ladies - thanks for the lovely welcome. This is really helping me to get through today.
I had tests done at the rmc (due to my age they agreed to see me after mc2). I think they were the standard blood tests - clotting etc, but all came back clear. They were pretty dismissive about trying anything different as they said aspirin and progesterone weren't proven to make a difference. For that reason I didn't try anything different for #3, but now really wish I had. Apparently the rmc will see me again for a follow up in 8 weeks, which feels like a lifetime away, but I assume similar to last time, they won't suggest anything new, unless there is a chromosomal problem that could be hereditary in which case I think they will test myself and DH. DH has spent all morning researching private clinics to see if we can at least get another opinion more quickly as we both feel that we would really like to try out some other options if they could give a glimmer of hope. X

Hi ourday congratulations on the BFP, what great news.

I have read differing things on aspirin as a just in case and many of the ladies on here have not had good results but I feel it has helped me.

I am currently 14 weeks pregnant after two mcs (at 9 and 11 weeks), a chemical pg and years of infertility. I'm on mini aspirin until my nuchal / dating scan which is being done this week as a 'just in case'.

I have known progesterone issues so took cyclogest until 12 weeks but have always tested negative for blood clotting issues.

If you do go for it be sure to have the gastro-resistant type, my consultant said the stomach just absorbs it otherwise.

Good luck with it all. Hopefully 2015 will be a better year for all the ladies on this feed.

x

sun I saw mr rai at st Mary's privately. He would probably prescribe progesterone just in case (he didn't for me at first but his colleague did at 8 weeks, hinting that the promis trial would show a benefit) but not aspirin for the reasons given to ourday. His colleague also told me to tske extra folic acid (3 tablets though I know others have been told to take them by the fistful).

Coventry is probably your best bet if you feel you have exhausted the nhs.There is also mr shehata but wev on this thread have less experience of him. I only know he charges £££.

ourday I am afraid I am not sure. I had a repeat TEG ib early pregnancy but can't remember what that tests for.

Welcome to the feed sun so sorry for your losses. Hope you're taking some time off work to rest and recover a little.

There are lots of lovely ladies on here with great knowledge between them. The good news is that despite there being sad stories and loss along the way most women who have had recurrent mc will go on to have a healthy pregnancy. There have been lots of happy stories on here and the odds are stacked in your favour so please don't give up and don't lose heart.

I would certainly enquire about seeing a recurrent miscarrage specialist. Lots of people on here have done great under the Coventry team if that's reachable for you.

Hugs xx

Thanks bootles And belle for the solidarity.

sun sorry for your loss. You are being very brave my dear. Sending you good wishes.

ourday crossing my fingers for you. And then some more.

cloud is it really true that pregnancy related illness does not count as sick leave?

And WHAT? Asprin can cause problems??? My GP did not get that memo.

flan how did your first day go?

Update from me: I'm now signed off work for a bit and I spoke to Coventry clinic. I'll have to wait until my next cycle to go but that seems OK. Feeling a bit better today.

Same as Cloud my EPAU have automatically referred me for the testing after number. 3. I'm cross with my previous GP though. Worcestershire have said they would have tested me after number 2 due to my age 38.

For 1 & 2 I came under Birmingham Women's and I begged to be helped after number 2. They wouldn't even consider it. Told me I was statistically more likely to have a successful pregnancy with number. 3. I said "what if I don't?" And was told "we don't know that you won't, we can't help you until after number 3"

Well guess what, here I am....

Sorry just feeling bitter and it's easy to blame someone.

Tanny I'm feeling a bit better about my age though as I know you are 42 and are now finally doing ok.

I do worry about it though. Even my own mother this morning told me older women struggle because of their "staler" (is that even a word???) eggs which is really unhelpful.

Feeling crampy now and it aches. So watching House of Cards on Netflix. Which is amazing!

Can I just check ladies - when you mention Coventry - is this Prof Quenby?

Brummiegirl - I am also panicking that my mcs are age related and I just have shrivelled old eggs. Although at the rmc, the consultant did say that while the chance of mc increases with age, if my eggs were running out and/or all bad quality, then I probably wouldn't be getting pregnant to begin with. x