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Miscarriage/pregnancy loss

Find support and share your experiences on our Miscarriage forum. See also legal rights and support after baby loss.

Original poster

Recurrent Miscarriage Support Thread 18 - tests, treatment, trying again.

999 replies

bakingtins · 20/02/2015 18:57

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

OP posts:
Frecklefire · 26/02/2015 21:44

Funny - i was 11 weeks too sebs - wr seem to be running parallel. X

sebsmummy1 · 26/02/2015 22:28

The ladies who tested neg for NK at Coventry, did they still put you on the protocol?

Freckle let's hope that in time we can be the people with some happy endings too.

sebsmummy1 · 27/02/2015 05:58

Wide away at 5.30am with the same awful commentary running through my head Sad
Need
It
To
Stop.

sebsmummy1 · 27/02/2015 05:58

*awake

TinyTear · 27/02/2015 07:05

Seb I was neg for unk cells but went on progesterone and heparin

Lovemylittlebear · 27/02/2015 07:06

Hi Sebs Mummy, I've had similar experiences in the past when my anxiety has been really high and I had some sleep issues too (had bad birth trauma after my daughter was born). It does get better, the thoughts get less powerful and upsetting and things do get easier with time. You are a good mum and you are trying the best you can :) please let me know if you want the psychologists details as she is fantastic and has since helped some of my friends with anxiety/depression/ trauma also. She specialises in acceptance and commitment therapy and CBT. She is very human and normal (not like you see on the TV lol). Hope you are feeling a bit better and have a friend that can come and give you a hug and a cup of tea with xxx

Justonemoretime · 27/02/2015 07:08

Sebs, I was normal for uNK cells, too. Just got the progesterone and heparin. I even only took the progesterone from bfp because it took 7 cycles to conceive after the scratch. I was advised yo only do the day 21 thing for the first 3 months. Seems to have worked, though! Smile

sebsmummy1 · 27/02/2015 07:12

TinyTear did prof Quenby prescribe the medications?

Littlebear we just don't have the money for psychologists on top of acupuncture, expensive supplements, private testing. I have up get over this on my own and I know it's going to take time - it's so fucking painful but I've been through a lot in my life and I know I'll get spat out the other side at some point.

My sister is coming along to our soft play jaunt today. She is lovely just effusively and unrelentingly positive with a small lack of sensitivity in allowing others to be sad. So I'm not looking forward to it in one way, but her son is only did months older than mine and they play together so I need to just take a deep breath and get on with it. I'm a terrible people avoider when I'm upset and that doesn't really get me any further in the long run.

sebsmummy1 · 27/02/2015 07:14

Thanks Just Smile I also remember you from the miscarriage threads and I'm over the moon you are pregnant. Like I said earlier, the fact so many people on here are successfully pregnant gives me hope that I might get the same result one day.

Justonemoretime · 27/02/2015 07:21

Sebs, prof Brosens prescribed the progesterone on the day and I got a letter to take to my GP for the heparin because you can't have it until an in uterine scan. I showed the letter my GP who wrote to the EPU and arranged that I could have early scans and heparin next pg. Then I took both letters down to the EPU on the day of the scan and the hospital prescribed it for me. Bit of paperwork, but got there in the end.
I know its still early days and grief takes time and comes in waves, but do look after your whole self if you can. I had cognitive hypnotherapy and believe it really helped me come to terms with things. Hope soft play isn't too much of an ordeal and your Ds has fun.

Justonemoretime · 27/02/2015 07:23

cross posts, thanks Sebs, its been a long road, but it seems to be working out in the end. Smile

Flen · 27/02/2015 07:27

Hugs to cat, I did a blog about that only yesterday - stuff doesn't go away, and that is true of when you're pregnant too. Loss is still loss and grief is still grief. Flowers

Am knackered after a terrible night with dog being restless (and then sick!) OH snoring and my anxiety beginning to ramp up as I head towards AF due date next Wednesday... YAWN.

AndCounting · 27/02/2015 07:34

sebs and cat sorry to hear you are in a the darkness at the moment. Hope things pick up soon. X
freckle you have described the classic 'what to do for the best?' I was planning to wait and go to Coventry and then we threw caution to the wind this month (thinking that this clinical trial might do the trick) and of course if I have another MC that will give me a world of opportunity to blame myself. There's no right answer here, kiddo. But I like what your GP said, there is a decent chance it will work out. All the best.
tiny that's super news. Uplifting. Hurrah.

Lovemylittlebear · 27/02/2015 07:51

Hi roncon, yes mine went up a couple of times but then started to drop and it managed itself. It feels completely different to this misscarriage. Cardiff were adamant it wasn't in my tube as they couldn't see if but I saw it in my tube when London looked. No baby thank fully it hadn't developed it was just the sac and yolk sac in there. Cardiff actually said lol that there were two little sacs in my uterus so it could be wrong dates and I could be having twins that was weird after I had been counselled on losing a pregnancy. They are a shit hospital from what I have experienced and they were blatantly pseudo sacs! Over 1000 they should see something in your uterus if it was there (that's what I was told by London hospital) so if they can't see anything and it's not a normal double rising hCG it sounds like it is either pregnancy of unknown location or ectopic. I personally found the PUL diagnosis really hard so I hope you are ok. Are they taking bloods every 48 hours? Xx

bootles · 27/02/2015 07:52

sebs and flen sorry you had bad nights

tiny that's great you have a date! How exciting! Doesn't seem so long ago that you were posting about a bfp in the early hours, and now its only another few weeks.

Think I will need to rebook a coventry appointment (couldn't keep the last one as ds ill). I had lots of questions post mc, and Prof Brosens suggested I come back to discuss. I have since e-mailed a simplified version about a week ago - ie what's the plan now - but still not heard back which is unusual. I can be a bit dense about these things, and sometimes need things spelled out to me - would everyone else take that as a hint to re-book the appointment?

bootles · 27/02/2015 08:07

freckle its a difficult one. I agree, there is no right answer. Do you know if any of the losses were due to chromosome issues? (Most often just bad luck). I went to Coventry after my 4th was found to be chromosomally normal and St Marys RMC clinic couldn't offer me anything else.

cat sorry you're feeling low, I hope the sadness lifts a little, soon.

Flower29 · 27/02/2015 08:09

bootles yes I would rebook. Best to have a face to face meeting and then you can make sure all your qs are Answered.

Great you have a date tiny, very exciting! Smile

cat understandable that you're going to be very emotional, especially as it gets closer to kittens arrival. Of course, you're never going to forget your lost babies, they are a part of you. Thinking of you.

roncon I had suspected ectopic. They saw a sac in the uterus (at which point I thought, phew not ectopic) and then said 'well we can't rule out ectopic' (shit!) although they could see a sac, there was no pole or yolk sac so he said it could be a pseudo sac (as littlebear's already mentioned). My hcgs at this point were 970.
They redid hcg that day and it was 950 but offered a laparoscopy anyway which I declined (as hcg appeared to have peaked). Could you request a laparoscopy? They also said any heavy bleeding or pain to go straight to hospital but I didn't have any unusual pain. I passed some tissue that weekend so I asshme it wAs the sac they saw but cannot be 100%. It is horrible not knowing what's happening and whether you're suddenly going to double over and it be very serious. Thinking of you, let us know how you're getting on. X

tannyLoo · 27/02/2015 08:20

Can't keep up! I just wanted to say to roncon that I had a suspected ectopic last year and it took ages to find anything. I was kept in hospital for a weekend and threatened with losing a tube or having mm. Eventually, a tiny smudge of an empty sac appeared in my uterus and the diagnosis was changed to a failing pregnancy (blighted ovum) and I was allowed to MC naturally. My symptoms were similar to yours except that I didn't bleed for a while, but had very slow climbing bloods. They eventually started to fall and I had a natural MC about a week later, with a follow up scan to check it was complete. I hope you get some answers. I found it a worrying time.

TinyTear · 27/02/2015 08:21

Sebs, as just said, they gave me the Progesterone there (I saw Prof. Brosens and talked to Prof Quenby on the phone) and emailed me a letter to print to take to my GP and maternity notes and all of that for the heparin...

maverick79 · 27/02/2015 08:26

sebs it is possible to get free help and support from your local NHS trust some via self referral, some via gp referral. Often there's a waiting list so its worth getting in early, you can always refuse appt if you dont want it when it gets offered. Theres often counsellors based in gp services. Also, I phoned the miscarriage association yday to see what they offered. They have online support but also gave me a number of someone local to me who I could call for a chat if I felt the need.

Catlover2014 · 27/02/2015 08:34

Trying to keep on track. Hugs to Roncon hope they can rule out an ectopic soon. Let us know how your next scan goes.

Thanks all for your kind comments. Feel much brighter today so think I'll blame it on the hormones haha!

X

tannyLoo · 27/02/2015 08:55

Sebs it might be worth checking on fb for any local miscarriage support groups. Here there is a peer led group that offers peer support one to one.

Prof B wrote the letter for me to get meds after an initial hospital prescription but my GP refused it, saying it was not nice approved (or some sort of bollocks), so I got repeat prescriptions when I went to Coventry for early scans and eventually had to get a private prescription to cover the rest. Bloody expensive. It worked out ok in the end but it was frustrating not having the support of my GP. My RMC consultant was fine about it, but I thought about that route too late unfortunately.

Bootles, yes I would rebook. I felt more supported there than anywhere else and went a few times in the early stages.

Baking, just wondering how you are and sending you lots of love.

No news here. Sweep booked for Tuesday and I'm struggling to keep up with toddler energy levels. Sleep is an absent friend and I am now very uncomfortable. As cat said, the pain and anxiety doesn't go away. Hugs to you cat.

Anyway, in the time it's taken to write this about twenty things will have happened!

longestlurkerever · 27/02/2015 09:26

Hello everyone! Gosh, busy thread yesterday. roncon - how frustrating and worrying for you. I really hope you get some answers soon.

Tanny - I bet you wish you could just move the clock forward by a couple of days and have your baby in your arms. Won't be long now!

Tiny - Not long for you either. Very excited about our imminent thread babies.

Freckle. Glad you had a reassuring appointment. I decided to give it a go after mc3 without waiting for Coventry and it has worked out, but it was a scary old time between bfp and 12 week scan. Guess it would have been anyway though.

Cat - I felt just like that last week. Have brightened up now and have even got some of my baby things down from the loft to sort through. Was quite poignant as several times I have wondered about just getting shot in case I never needed them again and they stayed Miss Haversham-esquely gathering dust and being eaten by mice. They are fine though, and my dm has offered to take the clothes away and bring them back washed and ironed (!) for me. Our builder is here painting dd's new room too, so that her current room can be a nursery. It's a bit scary but deep breaths - we are getting there. Am a bit under the weather though and have messed something up at work so am fretting about that even though it's not important really - just a bit embarrassing. Have painful mouth ulcers and a recurring eye infection i get has flared up so think my body is trying to fight something off. Chicken pox and scarlet fever are going round at nursery so worried about dd getting those but I should be immune to the chicken pox.

Bootles - sorry you are feeling abandoned. Do book the appointment. I hope Prof Brosens has a plan for you. Are you ttc at the moment?

Good luck to all those in the 2ww. I really, really hate ttc so really feel for you.

Brummiegirl15 · 27/02/2015 11:24

Morning all. Hope everyone is doing ok. Thread has moved so quickly since last night. I was bopping away to the Script in concert so missed all the chatter...

Something very silly - my AF still hasn't turned up and I'm on cd 27. Which I know in real terms is not late but my cycles are 24 days bang on. As we know I peed £7 down the loo and got a bfn so not pg

I'm wondering if the acupuncture and raspberry leaf tea and gazillion supplements have lengthened my cycle.

I guess change is a bit unsettling for anyone so am worried about why it hasn't turned up yet. Especially as I ovulated on day 9 which does fit with a 24 day cycle.

I'm stressing because of course AF means then ovulation follows and can book Coventry appointment

Am I being silly? I guess longer cycle might mean improvement in my lining...

sebsmummy1 · 27/02/2015 11:37

Brummie I would test again first of all and I do think there is a chance your cycles have lengthened. Which I would have thought was a good thing but if your OV day has stayed the same then I can understand why you're a bit Confused

I think you are quite a few months down the toad now aren't you? It always took a good three months for my cycles to decide how they were going to pan out post MC. that's one of the reasons I feel so dismayed I'm back here again.