Recurrent miscarriage testing and beyond.. Part 6.. Over here!

(995 Posts)
orangebowl Fri 28-Dec-12 18:55:56

We have filled up the last thread so here is the next.. Deep breath and grit your teeth for the roller coaster of emotions that continues... Hope tea and butterfly and all find it!

squizita Wed 05-Jun-13 15:17:15

I thought Quenby was my favourite name of all the consultants, but Farquharson is even better!! grin Scientists just aught to have scientist names!!

Bakingtins Thu 06-Jun-13 10:57:44

Scan today shows completed miscarriage. Pot duly dispatched for testing. They are going to book me an appointment at the NHS RMC clinic in about 6 weeks to discuss the results and my previous tests. At least it will save me some money.

donttrythisathome Thu 06-Jun-13 11:00:56

Baking so glad they can do the test. I have an appointment in 8 weeks.
How are you feeling? x

squizita Thu 06-Jun-13 11:26:49

Baking what a tough time you have had. sad However at least you are getting tests and it seems to be concluding with the professionals organising something for you. Wishing you very good luck for the tests.

Don'ttrythisathome good to hear you have tests too.

I'm pooping scared about tomorrow, even though I know they said I was just an outpatient. I'm bleeding quite a lot (heavy period-like, not go-to-hospital like) but my boobs still get twinges. I hope they are boob-deflation twinges, and I hope - as they suggested - bleeding might flush out anything remaining.

PicardyThird Thu 06-Jun-13 11:32:26

Lots of love to you, Baking.

Hand-holding, squiz - I really hope this will be the end of the whole draining saga for you.

donttrythisathome Thu 06-Jun-13 14:31:34

Squiz - I saw from your comment on my other thread that you can't start TTC for 6 months. I am so sorry. I hope this all ends soon for you.

I went for a cycle to the beach, and I thought of you all here. I thought how pain does not make you stronger. It leaves deep scars. But it can have two opposite effects. It can make you rigid, brittle and bitter. Or it can make you bend and break your heart open with compassion for yourself and others.

I see a lot of bending and compassion here.

xxx

Bakingtins Thu 06-Jun-13 14:59:34

Ladies, I'm getting myself in a tangle about what to do next. I'm increasingly frustrated with the approach of the establishment to miscarriage. One is "unlucky" two is "very unlucky" three is "extremely unlucky" and four is ...
I'm not hoping for much from RMC consultant appointment because it will be someone from the same team that I've already seen privately, and I've had all the tests they recommended and am still unexplained, at which point they moved to plan B which is to be relentlessly cheerful about your chances next time, and to quote stats about even after 3 miscarriages 60% will carry to term next time. Which is great, until you don't, and I've now lost confidence in them.
I read "Is your Body Baby Friendly?" after someone on here recommended it and it opens up a whole new can of worms about immunological causes of miscarriage. There seems to be a lot of controversy about whether these causes are significant, whether the treatments are safe, whether the successes attributed to treatment are actually due to the 60% having the babies they'd have had anyway. Going down this road means more travelling and more expenditure. I looked into going to Coventry to see Prof Quenby, who tests for NK cells, but that seemed to be the tip of the iceberg of possible problems. We're not covered on our health insurance for miscarriage, we don't have endless money to spend on this.
I haven't even had the discussion with DH whether we should just be calling it a day. This pregnancy (and the last one) was supposed to be our last ditch attempt to have a 3rd child. I'm a very stubborn person, I don't want to be beaten by this, and I don't want to look back in 10 yrs and be wondering "what if?" but I can also see all the stress and upset is adversely affecting my family and taking up a lot of my emotional energy. Perhaps I should let it lie and be grateful for the children I have.
At the moment I'm planning to take a few months off TTC and see what the consultant says. Fingers firmly crossed we get something back from the cytogenetics, because I think knowing if I'm killing healthy embryos or if we are producing embryos with chromosome problems is key to what to do next. I know from the tests I have good ovarian reserve, but that's not to say there are good eggs in there, perhaps they are all scrambled and I don't think there is any way to tell other than keep trying. I'm vaguely planning to go see Prof Quenby after that - have to wait until 7-10 days post ov in a normal cycle so that will be at least 7-8 weeks away, then another month for results of uterine biopsy.
I think I need a focus for the summer, then hopefully in September we can gather our thoughts and some new information and decide whether to have "one last try" before I'm 40.
Sorry for the essay. Any comments?

donttrythisathome Thu 06-Jun-13 15:51:57

It's a tough one Baking.

Personally I don't think I'm ready to go down the more specialist killer cell route yet. I feel like I should just keep trying, albeit with some more tests from the GP as you advised and the karotyping.

But I do think maybe I am too blase. I am 40 now and really am running out of time. Maybe if I don't do all I can now I will really regret it in years to come, especially if my daughter doesn't like being an only child.

i veer from thinking acceptance and hope is the key, to thinking I sold come over all Rocky and fight for this. Am I just too lazy. I'm definitely to poor for any kind of cutting edge treatment.

You see like a fighter, I think you probably know what you must do.

donttrythisathome Thu 06-Jun-13 15:53:17

Sorry for typos.

Have cramping now. Should have rested more.

squizita Thu 06-Jun-13 18:40:30

Baking it is so hard to know what's right. So much of 'cutting edge' treatment seems slightly unproveable, doesn't it? If it comes to testing for immunity I would probably try to go with Prof Quenby. I hope it doesn't get to that but I'm in a similar position with regards to positivity and statistics. On the one hand it's hard science, we have to be rational and positive. On the other, it seems like there's a curse or fate.

sad In my darkest moments I think I should divorce DH while he's still mid 30s so he can marry someone who has a working body and have a family.

I keep thinking, if I need chemo for this, I'll be almost 36 before I can TTC 1st DC and a recurrent MCer. Maybe I should just become a mad cat woman.

Sorry, not a very upbeat post there. sad Bricking it about tomorrow's appointment. Had some bleeding and some tissue (looked like tissue passed in natural MC) ... as far as I can see from molar threads on here, that's either very good or very bad: the symptoms for self-resolving and it needing chemo are too flipping similar. Or, as they pointed out, I could be partial + retained products and the 2 need to sort themselves out independently. Just so confused. Scared they will tell me 'give up' tomorrow.

aMuminwaiting Thu 06-Jun-13 19:11:57

I've got to call someone at Benenden fertility clinic tomorrow. If the phone call is really helpful I'll let you all know. It might be of use to any Kent based people out there.
I've seen some terrible consultants. The worst was in Maidstone. He kept going on about have I been in a car crash and not mentioned it! Seriously. He was sure I'd done something because it made no sense that my baby died. I know now that I have a weak cervix but at the time he had me wracking my brain thinking was it something I did? Horrible horrible man. I also saw a woman in Ashford who looked me up and down and said "you could lose weight and stop smoking, that stops a lot of miscarriages". I've never smoked in my life and am 11st which I don't think is terrible. She hadn't even taken the time to look at my file. My DH and I had waited in a boiling hot room for 45minutes for her to talk to me like that. I complained to the GP and he said "oh yes a lot of patients have complained to me about her attitude". Why send incredibly vulnerable people to her then?!
As if all this hell wasn't enough and we have to deal with consultants with zero people skills.

LandsN Thu 06-Jun-13 21:10:39

Just wanted to pop in and say hi and I am so sorry to read what your all going through sending big hugs to u all xxx

PicardyThird Thu 06-Jun-13 21:33:04

Donttrythis, lovely post at 14:31. Hope the cramping has eased. Take care of yourself.

Baking, in a way I am pretty much where you are - 2 dc, want a third, thought after last year's mc that I would only be able to go through it one more time and have now thrown all that out of the window, but am also frightened of the potential road ahead. I keep thinking that life would be pretty damn good right now if, if only, I didn't want a third child. But I do, and there's no switching that off overnight. Dh and I have had 'the discussion' and he has left things in my hands - he wanted two, he has two, he would be thrilled with more but he doesn't feel anyone is missing, iyswim. So the onus is really all on me, which is quite a hard and lonely place in some ways.
I think your plan sounds like a good one. I looked a little bit into the whole immunological thing a while back and I didn't find what I read very convincing - it does all sound highly controversial - but I think it would be a good idea to see Prof Quenby and discuss those doubts and issues with her. I'm planning to go back to the specialist who ran my tests and go through everything again with a fine-toothed comb - I can't find my copy of my test report atm so need to see him anyway. I might then ask him to refer me on to someone else.

We are ttc again already, but I have to say that it sometimes feels like a distinctly foolhardy thing to do. I think one of the hardest things about all this is that no path we take is ever free of conflictedness. No sailing through things for us.

squiz, I'm still holding your hand and sending you every possible good vibe for tomorrow. I'm so sorry things seem bleak. This has been so so hard on you.

muminwaiting - I'm sorry you have had such bad experiences with consultants. I think the whole elusiveness of miscarriage can lead to some terribly lazy (at best) 'care'.

teaandchocolate Thu 06-Jun-13 22:09:28

Hi everyone. Just a quick one from me to say that I'm thinking about you all, particularly Baking & Squiz.

Squiz I hope you get some resolution and some good news. Stay strong, you will get through this.

Baking I don't have much to add to what's been said. I too am undecided about nk cells and the like and even who to see - I read about a Dr Nduke who is now at Zita West and seems to get good feedback & is super thorough. I am also concerned about the cost and uncertainty of the treatment. If I were you I'd definitely try to discuss your concerns with someone more knowledgable even if you don't take it further than an initial consultation. There is also a thread on here for those ttc on steroids so you could maybe pick their brains?

I am going away for the weekend tomorrow so won't have wifi probably. I am going to try and enjoy the time away but staying with DHs family in a big house and am terrified of mc there! Also feeling really exhausted and achey. Not sure if its hormones or stress/lack of sleep but all I want to do is lie in bed and don't think that will go down too well with the in-laws!

Bakingtins Fri 07-Jun-13 06:27:03

Squiz thinking of you today. Really hope your bit of tissue was the end of it and you get an all clear today.

tea have a lovely weekend. Keep hanging in there.

My DH decided the day my MC was confirmed would be a great time to tell me that his sister is pregnant with her third child, only a fortnight ahead of where I would have been. Didn't take much to flip me to "brittle and bitter". That's another reason to avoid family Christmas like the plague then. I like her, and she was really lovely after my first MC. In his wisdom DH has not told any of his family about the subsequent ones so nothing to stop them endlessly banging on about it and wouldn't we like another? Grrr.

squizita Fri 07-Jun-13 15:56:57

Charing Cross monitoring my bloods for 6 weeks. Nothing alarming came up on tests, just that I have a triplody embryo and slow falling HCG. The 'crude' blood tests show the HCG has fallen 100 (380 to 280) in a week ... of course they need to do some fancy tests (ready 3pm Monday) to ensure no nasties or hidden hormones however they seem relatively OK and told me I should anticipate that I can work/go on hols over the next 2 months.

Fingers very tightly crossed.

donttrythisathome Fri 07-Jun-13 18:11:22

That's great squiz. A holiday would be good.

Baking, what bad timing. My SIL is due in a couple of weeks, when I would have been due my baby from the second mc. It would have been nice to be still pregnant when she had the baby. Everyone around me has had their second babies. TBH though, I don't want their babies, so it's not hard to see them. I want my own. I'd hate them to think I was jealous though so haven't said anything about this third mc. I'm sure most people think you'd love their baby, not realising you really don't want it at all.

I've had a dreadful time in the last 24 hours - fever, nausea, uncontrollable shaking, cramp, bleeding, exhausted, headache. Just back from the hospital (there all day) where infection diagnosed. I'm still going camping though (stubborn)

donttrythisathome Fri 07-Jun-13 18:12:50

And enjoy wknd tea.

And muminwaiting - that's very wise what you said about no path being conflict free. I think a lot of agonising can be trying to find the "right" way to deal with things, when in fact there is no right way, just your way. x

Bakingtins Fri 07-Jun-13 18:55:09

Ladies we need a new thread. I have form for jinxing them so can someone else start one please??

squizita Fri 07-Jun-13 19:05:07

Baking ... made a new one. [http://www.mumsnet.com/Talk/miscarriage/1774326-Recurrent-Miscarriage-Testing-trials-and-tribulations-Part-7] smile

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now