Recurrent Miscarriage Support - tests, treatment, trying again - thread 12

[bakingtins]

Welcome everyone! A thread for anyone who has suffered recurrent losses and is in need of support, information, moral support or tea and sympathy. Newbies very welcome.

Please can we start (as is traditional) with a recap of where we are on 'the journey'.

Just thank you. The cry of "take me seriously, PLEASE!!!" needs to be heard. X

Thanks just shall share it!!

Tiny how was your scan? Bootles, sorry you are being treated badly. Good for you not being intimidated.

No news here, which is good I guess. Heading into my danger zone now so very nervous. Another long drive tomorrow then flying to cairns on Sunday. X

It's not on for a few hours still.. Aghrgh

Good luck tiny I'm thinking about you!
just thanks for your blog post! Entertaining and educational!
Sorry bootles that you've had such a frustrating experience, I hope you are feeling better today.
I'm on my second day back at work and really struggling! Feeling so tired all the time and working 12 hours today. Was supposed to get a few hours break this afternoon but it doesn't look like that's going to happen... what a surprise! I suppose I just need to 'man up' a bit.

All OK
And low risk for all trisomies tested.

We can ask the receptionist to call the us and will hopefully get the gender next week as I hadn't asked before...

Still find it hard to believe...

Congrats tiny - you have made it past 12w and all normal. Now u can start to relax

Honestly I want to go to Coventry with cheerleader pompoms

Maybe after April...

Bristolian - it was about 2 weeks after I joined work that I had energy and wasn't tired anymore. So give it some time. On "manning up" - it frustrates me that men at work exaggerate even the slightest pain or headache while we go through mcs and are expected not to even mention it in the workplace.

Bootles - what an awful experience, hope you are feeling better now.

7wks since erpc today and I think I may finally be ovulating. So hopefully AF in 2 weeks- this has got to be the longest gap between erpc and AF. Can anyone beat that?

Haha Tiny - You should and maybe charge a commission as I am sure a lot of us will visit Coventry after your, tanny and bakings experience! And to think something so simple like progesterone and clexane were the answer.

I owe a lot to Baking

Tiny that is fabulous news!! I plan to contact Coventry after my 20 week scan, with said pompoms x

Great news tiny

Triple I agree - thanks.

Yay Tiny! Amazing news!

Thanks for the positive vibes on the blog post, and thanks for reading it. I find it helps me to get it all out and that was an issue that was really p*ssing me off!

Not heard from my local hospital yet re the HSG/Hycosy, but I have been able to get a potential appointment privately for about £400 for the end of October, so if the NHS doesn't come up with the goods, at least I know I can get it done. Its expensive (and I don't have pots of money lying around), but you can't buy time, so I think it will be worth it. Hopefully the NHS will come through in time.

I'm bloody knackered! Have a good weekend, one and all!

am on my phone as internet down, so will be forced into a concise post today:

tiny that has made me cry..its so wonderful to hear positive news. Major milestone reached

just thank you for writing that..it also made me cry. You have described it very well. You, and other ladies on here have reinforced that I am not in fact insane, but that it is a common emotion to feel fobbed off and patronised. Sadly so. Thank you. And just hope the HSG comes through quick.

longest so far so good, dont forget to enjoy your trip.

bristol try and take it easy .. work re
turns can be tough.

triple hooray for your cycle getting on with it!

Phone not bloody working properly now..

Thanks, Bootles. Sorry I made you cry. You're not insane, but the system is. I've corrected the mistakes in it now, and everything! That's the trouble with writing at 06:30 am and being too eager to post!

I don't cry often enough anyway and besides it was tears of appreciation and relief! I did notice how early your post was..impressive!

Just-beautiful piece of writing

Tiny- yeah another milestone crossed off!

Bristolian- hope the day ended better & remember tomorrow's another day x

So i survived first week back at work which has turned out to be manic and meant I worked 5 rather than my normal 4 days. No such thing as easing myself back in with me!

Going back to work I've been open about why I was off and that it's my second occurrence firstly because I didn't want anyone gossiping and secondly I felt it better to be out in the open (my person choice) Amazingly I've had two women come to see me and confess they have had recurring MCs but hadn't told anyone. Re-enforces that it's more common than people think.....

Thanks for the responses to my first post on here everyone. Very kind of you to share your experiences.

Having spoken to my healthcare provider (AXA) I have managed to get an appointment on 14th October with Prof Regan. Slightly worried now after Bootles experience. The Coventry team were not on the accepted / recognised list with AXA nor the other NKC testers (not sure why?) so we will see where we get to after the 14th and go from there. I am hoping she will at least explain my test results and the results of the testing they did after the MVA and reassure me at least. And possibly give me a plan?

If Prof Regan doesn't find anything we will then try to get the NKC testing done privately. Following baking tins example we would try to go to Prof Quenby.

I see from the Prof Regan questionnaire that we shouldn't ttc until after the second round of tests. I (think I) understand why but that feels like delaying everything even more. How did people cope during the testing period?

Thanks everyone

Barrelita - I have coped very poorly with the testing period - as my frequent ranting on here will have shown! Its beyond frustrating. However, its not as frustrating as what happened when testing had to be put on hold while I had my fourth miscarriage. I do also feel slightly more resilient after the break to be honest, and less like having a fifth miscarriage would finish me off. In terms of how I coped... , and ranting mostly.

That is massively fabulous news Tiny - and how exciting about finding out the sex. Wonderful news.

Girlie - congrats on making it through your first week. I've gone for the open approach too and it is amazing what comes out of the woodwork isn't it. Its a gamble though, because you also risk learning that people who you thought were lovely can be right tools!

Hugs to Bootles - just for being a bit tearful.

Sorry to hear you're having a tough day Bootles - I hope you made it through the rest of your shift ok.

Sending positive vibes to you Longest. Very jealous of your holiday though.

I am over at my parents tonight as are my lovely nieces aged 4 and 5. The 4 year old is poorly and its absolutely horrendously awful and draining and its only 9:45. Having flashes of 'maybe I'm not cut out to being a parent after all'. She's all hot and red and crying pitifully and its just ghastly. I'm not even the one looking after her! Grandpa is. Is this what being a parent is like?!

barrelita please please don't feel intimidated after my rant about Prof Regan. Don't. St Mary's still does a great job, and if there's anything that can be found wrong, she/they will find it (other than NK cells). Prof Regan is very well respected in her field, and I absolutely trust her in terms of the tests that they do. She is straightforward in her approach, but is bound to be perfectly nice to you. This is exactly why I was hesitant to post anything negative about the clinic, or her - I know people hang on for ages to see her, and there is much expectation. I don't want to give a negative overview. Don't let my experience have any bearing on yours - this is your appointment, your chance to ask your questions, your experience.

The NK cell issue is just a whole different ball game, and seems to elicit strong opinions. Sorry if I am misunderstanding but is AXA your health insurance? (I'm probably being a bit dim by not knowing who AXA is). If so, I would imagine health insurance would be very unlikely to recognise any of the providers in terms of NK cell testing, as it is still in the research phase. Insurance will usually only cover tried and tested drugs, procedures, treatments etc.

As for the waiting to TTC...I am rubbish at it and struggle.

girlie well done for doing the week.

Thanks twilight. Ah your poor neice. Its very tough and exhausting when they are ill. Those flashes of 'am I cut out for it' are entirely normal. Of course you are. Hope she feels better soon.

As I had my first 3 miscarriages between May and November 2010, the break before St Mary's was good as my brain was frazzled

tiny I'm so delighted for you! Wonderful news!

barrelita It's great that you are going to St Mary's. They are the best in the business in terms of the standard causes. The problem is they only find an answer 50% of the time. The NK stuff is new and not approved by NICE which will be why your insurance doesn't cover it. The frustration comes when you are being told that St Mary's or your local RMC don't know what's wrong and basically can't offer anything, yet they are discouraging you trying other avenues. In some ways I can see their point because I think once you get desperate you are vulnerable to the snake oil salesman, but as just says to treat you as someone not able to evaluate treatments for yourself is very patronising. hopefully you'll be in the group that they can help, I think in your shoes I'd be trying to put some money aside in case you are not.

barrelita think of it this way - st mary's is step 1. You may not need to go as far as step 2, which would be exploring NK cells if you felt it was appropriate. Prof Regan will be great : )