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 :)

Longest, how exciting to need a new swimsuit! I wore a belly/bump band thingy for the first time today with a hair band over my jeans button and my flies half down. I could have just about squeezed into them (you know how they are tight when newly washed, and then they loosen up once you wear them for a bit), but I figured that I shouldn't have to squeeze into anything now I have a good excuse not to! Now just need to trust that my trousers won't fall down in public!!!

Ahhh there was a whole page I missed, welcome counting, sorry to hear Christmas has been hard, big hugs. I have also found each MC has eroded a little of my confidence, I think you have to remember what you're dealing with and that it's ok to need time off/lesser responsibilities for as long as you need.

The weight thing, ahhh, bane of my life! I just love food but determined to lose a bit this Jan so I feel like there is something I am in control of!

Thanks counting. Amazingly I am 19 weeks now. I think there are now at least 7 regular posters who are past 12 weeks, plus Baking who has her lovely dd after 4 previous losses and several more whose pregnancies are going well this time.

But there are still some sad stories like brummie's and Bootles' lots waiting for testing or bfps. It is a very supportive place and has been a lifesaver for me.

Is anyone back to work tomorrow? I am quite looking forward to some normality now but nursery is on a training day so my mum is coming to stay, then I have a friend visiting Tuesday night so I am not there yet!

just not even different consultants within the same hospital in the same clinic agree on the right protocol!!! It's one of the most frustrating things about mc that you don't realise until it happens to you. There's no consistency with professionals confidently stating what has happened and what they will do about it!

Welcome counting glad you decided to join us. It makes a huge difference not to feel so alone with it all. After my first MC I was surprised how many women could say "me too" but as they mount up you are more and more isolated in that experience.
just I had no idea about the university rivalry thing! It's really not helpful when they disagree with each other anyway, I can accept it when so much of it is still being researched, but they need to keep any personal feelings well out of it.
counting I'm a massive fan of the Coventry approach since I credit that with my success. I was unusual (in terms of a not v scientific straw poll of the thread) that I had v high NK cells on my biopsy and needed steroids, but I take it as a positive that although they seem to tell a lot of women their NK cells are normal, they are still then having success on the progesterone/heparin protocol which is supposed to support implantation. You'll need to take a break from TTC for a few months of you want to go, but it sounds like an enforced break to regroup would do you the world of good. I agree with the others that asking about tertiary referral to St Mary's would be worth pursuing in the meantime.
I felt Coventry was the last ditch try for me, if they hadn't offered me something different than my local RMC we'd agreed not to try again. It takes a special kind of courage to keep picking yourself up and willingly putting yourself back in the firing line. I can understand how it erodes your confidence but really you are one tough cookie to still be putting one foot in front of the other. Take care

Hello counting and welcome.

Apart from your age (I'm 42), your story reads like mine. There is a summary at the start of this thread, but I had 5 early MCs at around the 6 week mark in just over a year. Each one floored me in a different way, but the last one sent me over the edge. I took my maximum paid sick leave (work were awful with me) and then resigned to start my own business, thinking my life needed to be about more than just baby death.

Of course, I was also checking out Coventry, thinking I had one more go in me, had tests and got pg again before the results came back. I was successfully treated and am now nearly 31 weeks, with an agency job, no maternity leave, or job to return to. Scary as fuck, and still the best thing ever.

I also think that my issue was implantation related, with a very thin lining as an indicator, which is what the Coventry team specialise in. I had all the standard NHS tests with my local RMC consultant, but they all came back clear.

My fitness was never tip top, but I definitely gained weight with each loss. And I am more emotionally vulnerable now, knocks are harder to recover from and I cry so easily.

We do a good job of looking out for each other, in a world where people don't get the huge impact of repeated loss.

Welcome!

Oh bother. Just lost a long post. I will try to make it shorter.
Welcome counting, and so sorry you find yourself here and that you've had such a dreadful festive season. You are still very early in the grieving process for this one so please don't feel you should rush back to work. I think a bit more time off would make a real difference to how well you're able to cope with it, and maybe in a couple of weeks time you can think about the phased return your sister suggested.

I think in our situation it's so hard to know whether your lack of confidence/enthusiasm for work is a temporary thing brought about by every waking thought being taken up by the process (or is this just me?!) Or a more permanent thing that might need a change of job or even career. I do think this mc thing changes you and your outlook and maybe this change of outlook means that your job doesn't 'fit' any more. Whichever it is, I think a few more weeks to heal a bit more will make you feel stronger and more able to decide about this. It doesn't in any way make you a failure that you don't want to do the more senior role. Massive hugs to you

bootles and brummie, hope you are both doing ok, as much as you can be x

Welcome counting - am so sorry for your losses, what a terrible time you have had. The ladies on here are so lovely and impart so much knowledge and good advice, I hope you get the support you need.

Can I ask a silly question - I went to my local rmc clinic, which is Kings in London. I understand Coventry is different but how is St Mary's different? I can I self refer if I am being treated elsewhere? I've felt very confident with Kings before, it's a research unit led by Prof Nikolaides so if feel quite lucky. But perhaps they are not experts in miscarriage.

Back to work properly tomorrow. On my second edd. And the same week last year when I had my 12week scan. I swear sometimes the universe likes rubbing it in. I'm sure we've all got stories like that to tell.

Welcome Counting.
In my case after 3 losses went to St Mary's and all was normal. Had dd with no treatment.
Then 2 more and went to Coventry for a last attempt. I am now 26w after nk cells being normal but following their progesterone and heparin protocol. I am.apparently hyper fertile and also had thin lining.

I am going to be 42 this year so had decided this was our last attempt.

As it seems you are in London I'd advise you to try city pregnancy (google them, can't get the link now ) for counselling as they specialise in miscarriage, pregnancy and stillbirth...

That's not a silly question monten. I am not sure myself. I was going to be referred to my local RMC for some basic tests and then for a tertiary referral to St Mary's if they came back clear but because I am in London I pushed for a referral direct to St Mary's which I was able to get mostly because I was getting the initial tests paid for privately. But from what I have read on here the tests seem pretty similar at most rmcs. I had tests for insulin, thyroid and various clotting disorders (Inc a TEG test repeated 6 weeks apart and again in pregnancy) and then scans (Inc a saline scan but I got pregnant before I had this) to determine if there was a structural problem with my uterus. I was also offered participation in trials re thyroid antibodies and later I saw posters advertising trials for a new medicine. I think research may be where they excel? And I think they specialise in the structural problems though can't be sure.

I don't think you can self refer but kings can refer you if they feel you would benefit from further tests.

Hi Counting I'm a Christmas 2014 mc'er as well. Had my ERPC for mc number 3 yesterday.

Welcome and sorry you are here. This thread is great and the ladies wonderful. Many who I "met" the first time I had a mc and have supported me through number 2 and now number 3.

Re treatment I'm going to see how I get on with Mr Watts at Worcester and his rmc. But if that doesn't help I may well look at Coventry. Being in the Midlands makes it v easy for us.

Debating acupuncture as well. A colleague of mine has had. 3 mc's and she had acupuncture and then got pg. May try him. Will try anything really.

Got my counselling on Wednesday. My last session was the Wednesday before Christmas and we were discussing how wonderful it was to have a hb and how to cope with the anxiety of being pg again after mc.

Fuck me she won't see this coming

Counting Welcome, and sorry to hear about your losses. This is truly the club that no one wants to belong to, but you will find lots of advice and handholding here.

I agree with what others have said - everyone is different when it comes to going back to work after a mc. Personally, I found the 'rebound' from my 1st mc incredibly hard, then an infection was thrown into the mix, and in the end I had about 6 weeks off. For the other 3, I took on average 2 weeks - I've always recovered quite well physically and then found work quite useful to distract me from the emotional fallout.
However, it sounds as if you are not ready to go back yet. And that's totally OK. Go to your GP tomorrow and get him/her to sign you off - mine have been very understanding in the past, so hopefully, it won't be difficult for you. Then just go with the flow - see how you feel every day and do what you like! If that means sitting on the sofa in your PJs all day, watching TV - great. Or if you decide to give the house a make-over - great. Have a massage or a facial, manicure etc. Anything goes in this situation, as long as you feel comfortable with it.
Also, have you considered having counselling? I've had it after my last mc, and it has been so so good and helped me through a lot of rough patches, I can really recommend it.

justone thanks for the point on the rivalry BTW the consultants. Silly of them but as well to be aware of it. Like barking says!

Longest thanks for the details of the clinics and waiting lists. I'm the opposite of thick-skinned at the moment but forewarned is forearmed. Alas not a civil servant. Coventry is sounding promising for me. (19 weeks- yay)

tannyloo thanks for your mssg. Aces you are expecting. Well done starting your business. You have courage my dear.

Thanks, Marchgirl you hit the nail on the head, it's impossible to know what's permanent and what's not. Thanks for saying it doesn't matter about the senior role. Too right.

bakingtins thanks for bringing me into the fold. And thanks for calling me a tough cookie, that gave me a boost.

Congratulations, Tiny these good news stories are uplifting

bythesea and Monten thank you x

Brummie thanks m'dear and likewise, sorry for your loss. Hope your counselling goes well. Xx

I just read through these posts with DH and you have all given us such a positive feeling. There's lots of hope. Good night all.

Thanks, cloud, counselling is on my shopping list for the GP. I had some through work last time, so should be able to have it again that way if not.

My GP said she would be happy to give me more time off if necessary. Then I will have a swim and then go for a coffee and croissant with my book. Thanks again

Tried to post yesterday but tablet had issues. I'll be brief (for me) as am trying to get early nights.

twilight, hello again. I think most of my pregnancies have involved a v faint line that takes a while to develop into a more definite line. Everything crossed for you and keep us updated.

brummie I wrote a long thing yesterday but will summarise. Firstly, glad its finally all done. And as others say, bleeding often comes over the next few days. My erpc was on Monday (so nearly a week ago) and I had no bleeding, but then a fair bit of cramping and thick blood. However on my first I had no bleeding at all.

The numb and calm feeling you referred to before is definitely a coping mechanism. Its just not sustainable to be at the other end of the grief 100% of the time (ie tears, panic, etc etc). Personally, I have got 'better' at dealing with the MC's in terms of a lot more calm numbness, mainly due to focussing on keeping things going for DS. Also they have changed me as a person, and how I cope with things, which for me means less tears, but the grief is of course just as bad each time. I totally relate to feeling broken. That is exactly how I would describe how I felt immediately after each mc, and for varying lengths of time afterwards.

Its lovely that the surgeon spoke to you afterwards. I too cried to the anaesthetist. Sorry that you felt turfed out the morning afterwards. We are here for you, to listen, hand hold, anytime. We get it xx

and counting sorry for your losses and that you find yourself here. We have some similarities. I have a 3 3/4 year old DS, and had my 5th mc over Christmas. ( My 2nd was a tfmr, and all my mc were at differing stages, so medically we may not have the same things going on, who knows ). I echo all the advice already given. If you are being referred into imperial college that's St Mary's then - are you London based? I was seen there, and nothing found wrong, then self reffered to Coventry, where I was found to have high NK cells. According to Coventry 1 in 10 women who sees them has high NK cells, but as already stated, several people are doing well in their pg's on here on the protocol from Coventry without high NK cells/steroids.

I have definitely list confidence since having the MC's. I need a new job, but it seems overwhelming to get one. Unfortunately a lot of my job involves speaking to pg women about their pg's and I am dreading going back. Also previously taken a week or two off, but am struggling this time. Due back a week tomorrow. Thankfully only do 3 days a week (but hate it). I think the anxiety you refer to is a normal reaction to very stressful situations. Give yourself a break and take the time you need, and if you only think you can manage a couple of hours at a time when you do go back, see if that's possible (no idea if it would be, depends on the job I know). Stay on here and we will look after you. Its a shite situation to be in we know.

No doubt I have forgotton loads of what I was going to say, but that early night is slipping away. Oh, am mainly 'in', just a few friends and work managers know, but recently told some family, still a bit unsure about that. 'Out' is good though.

bootles good to hear from you glad your physical recovery has been uncomplicated. I don't know how I would cope going back to work if my job involved dealing with pregnant ladies. Is there any help available to you through work. If not, then there should be.

counting welcome and sorry for your losses.I think you have the general gist of this place now. It is THE go to place for advice, support and help for ladies suffering from repeat mc. If it is more good news stories you are after, today I am 16 weeks. This is my 4th pregnancy 0 dcs, I am 40 and had decided this was to be my last roll of the dice and so far so good.

brummie so glad you are home. I found mc 3 really tough. Didn't feel I could put it down to bad luck any more, had to face the possibility of there being an underlying issue, but there is some comfort in that as there may be some answers there as well. I get that you want to push on, but do consider how much time you need to recover physically and mentally. Despite my ticking clock I always took a bit of a break ttc after each loss and I do think it has helped me cope.

sasha well done on your positivie start to the new year. It is good to focus on what you can control.

News from me, I think i may have felt the first signs of movement yesterday. Quite low down, almost felt like one of those involuntary muscle spasms. Not 100% sure but bump is definitely developing. Four weeks to next scan...

counting welcome to the thread, and sorry to hear what you've been through. I echo what everyone else has said! I took 3 weeks off for my last mc, having gone back 3 days after my first (!!!) and a week after my second. I am finding it progressively harder each time. Like lots of people on here, I have also slightly changed my work situation. I got offered a chance to do something that is risky, but what I love, so I have gone part-time in my main job to start the risk! For me this was about actually having a choice about something in my life. We shall see how it goes (I start today!)

bythesea Yes please! Will pm you.

Joining in with everyone on a health kick, I have put on half a stone, so am now doing a low GI and wheat-free diet, along with trying to do 10,000 steps a day. I bloody hate exercise, but love walking, so we will see how that goes!

How exciting Belle, I also thought I felt a flutter last night. Def not wind... but this is all brand new territory for me. 15.5 today...
Good luck to everyone returning to work today, and healing vibes to those that need them. I hope you can start to move forward from today. Thinking of you.

belle and just how exciting! Remember when you start feeling movement it will probably be very sporadic at first with days of feeling nothing in between, and that is normal.

flen good luck with today and your new work plan...it sounds intriguing.

belle unfortunately work aren't especially helpful, though I think if I asked for anything particular they would try and assist. Really need to get out of the job for several reasons.I need to find the energy and umph to make changes, but am starting a short course this week which is step towards where I want to be. Only one day a week so just about all I can cope with at the moment.

Anyone else get bad headaches for a while post erpc? I think its the hormonal changes...

Ooh flen, exciting. Good luck!

belle and Just musclee spasms is how I would describe it too. Definitely not bubbles or butterflies. Think I have a footbailer on my hands. But I echo what Bootles said. It's still sporadrc even now.

Hugs Bootles. You sound very strong. I guess you're a bit in limbo again pending your results? Hope you can concentrate on taking care of yourself.

I feel quite lucky that I like my job -most of the time. Have been feeling pretty crap at it lately but am back on form now I am pregnant!

Good luck with the new job today flen

Hi ladies, hope it's ok if I join your thread. I had my third miscarriage a few days ago:
Mc1: April 14 erpc at 11 weeks, fetus measuring 7
Mc2: July 14 erpc at 8 weeks, bo
Mc3: Jan 15 erpc at 8 weeks, no hb, although hb seen at 7 weeks
I am 38 with no kids and just feeling completely destroyed by this. We had blood tests done after the second but all came back fine. Am feeling really lost as to what's next for us. X

I am sorry sun. It's an awful thing to go through. Do you mind me asking if you have already miscarried or are going to have an erpc? If you have not already miscarried it is worth trying to have testing on the foetus to see if there was any chromosomal abnormality as that will give the best clue as to whether it was a problem with the foetus that is unlikely to recur or another cause. Do you know what blood tests you had? If you scroll back a few posts you will see the advice given to counting about Coventry and st Mary's and this would be applicable to you too.

In the meantime I hope you are taking care of yourself. Don't rush back to work if you are not ready and keep posting here. There is heaps of advice and support here and we understand what you're going through.

Am back at work now but can't get logged on. Frustrating!

Hello - thanks so much for the quick response - it's lovely to know that there are people out there as I am sitting in work desperately trying to hold it together and failing miserably! I had an erpc on Friday and they did agree to send the tissue off for testing, although they mentioned it may take a few weeks to get the results. I will have a look through this thread properly tonight to check out the advice others have had. I just want to try again as soon as possible but feel as though the outcome is inevitable now after the third in such quick succession. X