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Recurrent Miscarriage Support Thread 15 - tests, treatment and trying again

990 replies

Justonemoretime · 01/01/2015 09:02

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 :)

OP posts:
Boozle80 · 12/01/2015 19:05

That's really helpful of whoever you spoke to - I'm persueing a complaint at the moment of our local EPU and insisting they train all their staff in compassion...
I found it helpful to research articles to take with me showing the positive side of the drugs I wanted them to give me - I didn't need them in the end but it gave me a real focus of something to fill my time with while I waited for the appointment to come round. It also made me feel like I had something to say and that I could back it up with evidence - mainly so they couldn't fob me off so easily! Where abouts are you?

girliesaints · 12/01/2015 19:09

Boozle, your first post of the evening made me laugh x

ourdaywillcome1983 · 12/01/2015 19:10

I'm in sheffield. My husband says I should complain too - there have been too many things that are not satisfactory. It makes me so nervous to know I'm up against them, which is why I wanted to wait til 7 weeks (as I did with mc3) but to give me the deltaparin/fragmin they want to see me ASAP.
It was a nurse who said that too, potentially one who could even be In the scan so still won't know the answer then either Sad

Boozle80 · 12/01/2015 19:16

I've been treated at manchester St Mary's and they've been amazing - they take self referrals - I can honestly say the best thing I've ever done is changing hospital to there, they're amazing. Let me know if you want my consultants contact details, she'll probably see you on Mondays clinic next week if you're pregnant

ourdaywillcome1983 · 12/01/2015 19:19

I know just and tiny were prescribed theirs I just don't want there to be any battle (as there has been for everything else)

Boozle80 · 12/01/2015 19:21

St Mary's put me on heparin, progesterone and an anti-immunity steroid without question - they said because they hadn't done tests yet they'd better tackle all possibilities as none of it will harm the baby. They also gave me weekly/fortnightly reassurance scans which were great.

ourdaywillcome1983 · 12/01/2015 19:22

That's really interesting boozle Manchester isn't a hassle for me to get to. The sheffield cons used to be really highly regarded (T.C. Li) but he's gone back to Hong Kong. I would like your consultants details please, that would be great - a backup plan might give me the reassurance I need.

ourdaywillcome1983 · 12/01/2015 19:23

Glad st Mary's have lived up to their great rep for you. Hopefully I'm hormonally worrying about nothing. My heart pounds when I think about it.

Boozle80 · 12/01/2015 19:36

I've PM'd you all their details :)

ourdaywillcome1983 · 12/01/2015 19:48

Thank you boozle :)

bootles · 12/01/2015 20:47

ourday I felt just the same with the last one. Terrified they wohldnt give me the meds, and terrified about the scan. I dont know if this will help you, but I kept telling myself I had no control over the outcome of the pg. What will be will be..and did deep breathing and told myself I could handle any outcome. Sadly it was a bad outcome in the end, but there's no reason yours will be. With the meds I think if you are assertive enough, they are likely to give them to you. Good luck.

barking that sounds so frustrating, I hope your body let's you know soon what its up to.

just great 16 WK appt news!

brummie glad you are feeling a tiny bit better

sticking I don't mean this as bluntly as it sounds, but the universe is not that interested in us lot, in my opinion. Sorry you had a bad day though.

tiny GD - what a pain, sorry you have an extra thing to think about. Also I just can't imagine you wallowing, you don't strike me as the wallowing type..(meant as a compliment)

mrsdiddlydoo · 12/01/2015 20:49

Sorry if this is a daft question but those of you who gave up on the NHS for one reason or another, how did you find and/or choose who to go and see privately?
The blood tests my gp arranged have all come back as normal. We're still TTC but the thought of another possibly unnecessary mc no 3 is playing on my mind and I wouldn't mind exploring possible options available to us. Can I or should i ask my gp? I've been on google searching for consultants with an interest in rmc, but how do you know if they're any good? Totally confuses me! Confused thanks!

bootles · 12/01/2015 21:05

I think it was boozle who started the swearing business in support of my work 'back off' vibes. Its my duty then, to say for fucks sake my work place is fucking shite. BAD day.

I was there for 20 mins when someone walked past and said ''oh you're back, how are you, you didn't have another (waved hands vaguely at stomach) did you? '' I was so shocked at her brazen insensitivity that I nodded (dammit dammit dammit I hate that I nodded) and muttered something vague and must have displayed SOME fuck off vibes as she then backed off. Two mins later a colleague who I am closer to but who is known for his big mouth, greeted me and said "oh no have you had another mc?". No-one there knows about the last three so its infuriating that its so obvious - a few appointments plus two weeks off = mc

Wish I was a more in your face kind of person and that I could have done some quicker, more clever thinking, but I'm just not.

At lunch time I went to update the genetics counsellor that the pg had ended. I ended up outside crying into the phone, and realised I was actually standing in the middle of a bush, in tbe rain, where I had unwittingly ventured in an apparent effort to hide. Must have looked lime a right idiot. Luckily she is lovely, which helped.

My manager had nothing to say to me (ERM..how about..how are you? Let me know if there's anything you need...etc)

And THEN.. OH was annoyed that I had even to!d anyone at work about the first two MC's, as he seems to be ashamed of it, or something, or it dents his male ego. Well he can sod off an' all.

Apologies for the me me rant, just a really rough day, with numerous holding back tears episodes, yet another throbbing headache for hours (still there) and a weird total exhaustion.

Boozle80 · 12/01/2015 21:13

Oh Bootles, what complete and utter arse wanks. All of them. Why are people such knobs, seriously - my five year olds have more tact. When do you have to go back again? Sending you massive massive hugs xxx

bootles · 12/01/2015 21:13

mrsdiddly not sure..I went to Coventry based on what was said on here, and specifically because they look at NK cells which is the one thing I hadn't had checked. Many of the private consultants will also work in the NHS and won't necessarily do anything different in the private system- just more quickly, and with on time appointments. If you haven't been seen by a RMC clinic yet, then yes private could be an option to get that access sooner - the gp should be able to advise further on that I would have thought.

barkingtreefrog · 12/01/2015 21:29

bootles that sounds like the day from hell, well done for getting through it. People can be so bloody insensitive, it's unbelievable Angry.
I can't believe your dh's reaction. With friends, I think it's best to have a united front and agree beforehand who you will tell, or let the other know who knows - nothing worse than assuming someone does or doesn't know something when you see/speak to them, when the opposite is true.
But work is up to you - it's you that has to deal with your colleagues and you that knows whether telling or not is the best thing for you. There are 3 people at my current work that know some of my history, as much as they needed to at the time. When I was teaching everyone knew, as I was a complete mess and trying to deal with two pg colleagues at the same time I was still bleeding. For the sake of my class I needed to know that if I gave a signal, someone would immediately step in and take over if necessary without needing to ask questions.

Marchgirl · 12/01/2015 21:31

Sorry to hear you've had such a crap day bootles. That's awful that your colleagues are so completely devoid of tact and compassion. I frequently wish I was better at coming up with things to say quickly, but it's hard when you're not imagining people will be so blunt. Glad your counsellor was nice at least.
Grrrrr at your OH not wanting you to tell people. Angry. I think mine is the same. He's a v private person and hasn't told anyone and although he hasn't said anything to me, he's made faces when he's heard I've told people. I know how you feel and It's really the last thing you need hun. Just ignore him for now and maybe you can discuss it more when you've had a better day. It's up to you who you tell and he shouldn't be dictating that to you.
Hugs Flowers
On the plus side, it can only get better Hmm

Catlover2014 · 12/01/2015 21:39

bootles massive hugs to you what an awful way to be treated. People can be so ignorant.

Please ladies don't be afraid to complain at bad nhs treatment. Making a fuss is the best thing I ever did to get the help I needed.

Hugs to you all xxx

girliesaints · 12/01/2015 21:44

Massive hugs bootles. Hope you're tucked up. It's a big nasty world out there at times. As you know we're all here for you and feel free to vent at any time tomorrow x

tannyLoo · 12/01/2015 21:48

Bootles what complete fuckwits. And dickwads. not taking this opportunity to teach my new phone some good swear words at all

I tended to "overshare" about my MCs at work, which shut the fuckers up.

Hope it is better next time you're in x

mrsdiddlydoo · 12/01/2015 21:49

Thanks bootles. Sorry you've had such a shitty day. I really don't understand how people can be such nobs.
I told a close colleague I'd had a mc after that first one and he burst into tears. It was awful. Felt so bad and he's a 'big tough bloke' type. Had hg with ds so now whenever I'm off for more than a day people automatically think I'm pregnant. Sucks.

barkingtreefrog · 12/01/2015 22:00

tanny I, too, am a fan of the tactical overshare. I tend to use it if people start going on and on endlessly about their pg or their children, or asking personal questions when inappropriate. If it's a choice between me running away and crying in the toilets, or them feeling a bit uncomfortable, I choose their discomfort. Not failed me yet Grin.

SashaKerr · 12/01/2015 22:06

This reply has been deleted

Message withdrawn at poster's request.

longestlurkerever · 12/01/2015 22:27

Huge hugs Bootles. What wankers.

Great news Just! Really pleased.

On private consultations, I saw Mr Rai at St Mary's, mostly as for my insurance I needed someone who has both private and nhs clinics. I agree it was all the same tests but £1500 would buy you all the tests except karotyping and if you can afford it it might be worth it if you can't get an nhs referral. Try and get your go to do at least some of the blood tests if you can though as they really add up.

tannyLoo · 12/01/2015 22:29

And if anyone is ever down in the West Country I'm up for a meet. Baking maybe we ought to get the ball rolling!

And I'm also on fb if anyone wants to hook up on there. PM me. Be warned though, I am slightly militant political over there, and a left leaning wooly liberal...