RESPONSE Trial for recurrent miscarriage: Thread#3

[Marchgirl]

For anyone on the RESPONSE medical trial for recurrent miscarriage, or thinking of joining. Peeps at all stages of the trial welcome!

Link to previous thread is here

Definitely claire you can 'go on' as much as you like! That's what this group is for! If anything, luke march says we are more invested! I know I am new to the group but all I can see here is constant support!

I've come to the conclusion that I am not pregnant this time... I'm going to just try and forget about it. I feel like I started testing waaaay too early! I'm just following the instructions but the testing seems to bring with it a whole load of pressure... And seems to last forever!!
Just to check as I am doubting myself now, I stop ov testing when I get a solid smiley right? X

Hi Vicki. I always test until my smiley has disappeared then stop. I've only carried on this time because my gut instinct told me to because. my smiley was really really early this time and I'm glad I did!

Ah okay... Thanks kazz. I stopped after the solid smiley... That's all I got, no flashing one before? Next month will try and keep testing.

I think I was just so relieved to have gotten a smiley as have just been told by the consultant that my PCOS is back big time. Was half expecting not to even ovulate! X

Hi Vicki I started ovulation testing on day 10 and got a solid smiley kept testing until smiley went which was day 16, I then got my bfp 19dpo (19 days since first solid smiley) which was the day my af was due, I normally have a 28 day cycle so all works out about right, I don't think my first 4 smileys where ovulating I think they where a surge I don't think I ovulated until cd15- 16 which would work out with what my scan date said from thursday so hoping that's the case anyway! Hope that all makes sense! X

That does make sense... Need to work it out! I think at the moment I have a 34 day cycle at the moment. It's a bit of a mess since the last mc.

I haven't done it right at all this month then! Start next month properly and hope I catch before October! No pressure whatsoever.... x

The October date is a nightmare! I'm. emailing my trial nurse shortly so will check if there's any updates! I need to know if I should still be having my rmc appointments alongside my trial appointments. I've still not had any official appointment to tell me my test results and to discuss the outcome of my tv scan. it's nearly 3months since my first appointment!

I also test until . disappears I bought internet cheap ov tests to use as you don't get that many for trial.

thank you ladies, I guess I'm just starting to dislike the person I've become since the mcs. I'm up and down like I dont know what and obsessed with getting pg. my dh just doesn't feel like I do about it all and get a frustrated with me as I'm getting worse about it all. I hate how I feel like it's making me upset sometimes when I should.cherish every moment with my ds.
I'm starting a cleanse tomorrow for 9 days I need a kick start to eating healthier and if I lose a bit weight I'm hoping it 'll motivate me, bit fed up today though as I started running/jogging last weekend which I'm enjoying but have hurt my leg somehow so going to have to miss a few days . x

Exercise definitely helps Claire. Be careful with running because it's very easy to damage knees and hips if you push yourself too much and you're not experienced - as I learnt the hard way!

I'm on my 3rd week next week with a personal trainer and now I'm off school I'm going to be hammering the gym. Need to get some confidence back about my body as recently I've just felt it's letting me down in size, shape and function! I can control 2 out of 3 of those so I'm going to try damn hard to regain some control! Holiday 5 weeks on Tuesday is my incentive!

How does the testing work with the kits? Can you keep testing on the same kit after the smiley?

I know exactly what you mean claire I sometimes feel like all I think about is babies, it's hard because I haven't been able to even carry one. It seems everyone around me can just snap their fingers and get pregnant! And it always works out.

I don't like that the whole thing makes me think differently about people too. So you aren't alone!!

If it's any help ladies, I have been doing the Whole 30 plan... Have a Google. It really works. I lost a stone in a month with no exercise change etc. it's hard to get into at first and you need to prep but it makes you feel really good about yourself I found.

The book is well worth getting as it explains why you cut out the things you do! It's basically dairy, grain and processed sugar free. X

PS. Would be good to know about the October date too? X

Which ovulation kits have you been given? Not sure of the ins and outs of how they work but you can still use the holder after a smiley and just replace the pink stick each time.

One problem I had last week is I used and old holder on cd11. got a . opened a brand new holder to double check and got no smiley. went for best of 3 and the 2nd test on the new holder was ! by evening the smiley had gone again. I carried on testing each morning and smiley reappeared today. it's still there this evening so will keep testing till it goes again.

I've gone through soooo many pink sticks this month already but thankfully the lovely Louise us sending me her leftovers to top me up. Really hoping we catch this cycle because I'm pretty certain the next cycle will be a no go trial wise due to the timing of our holiday. And the following cycle would take me within 2 days of the deadline!

kazz I have been given the clearblue ones... Is that the same as you? I think I had just missed the point and stopped testing after the smiley.

I will just try it next time then!

Are you on the Coventry trial? X

No. Not done anything with Coventry yet and with the response trial deadline looming I can't afford to skip a month ttc to go and have the tests for unk cells done. If I don't succeed and get a bfp before the October deadline I'm going to look into having all the further available testing done including the tests at Coventry

Good thinking!
Yeah, they did say that there are lots of other things that they can look into at Coventry. So much better than the options we have had at northampton. So, hopefully we hit the deadline of October but I guess if not we have a way in with Professor Quenby. x

it's just below my knee kazz. it's really quite sore so will have to rest up. how annoying!!

you ladies at Coventry are very lucky as I think once trial ends I have no other options x

There is a recurrent miscarriage thread (currently number 28 - I set up the latest one yesterday) and on it there is a link to a spreadsheet with details of all the tests available at places around the UK.

I'm not at Coventry Claire. I live in Manchester so would have to travel down there for the appointments. About 2.5 hours on a good day. God knows what on a week day. But as long as I can get the time out from work which I'm hoping I could pull off I figure it'd be worth it. Anyway - not thinking like that as I won't need to go! (Think positive think positive! )

do you know costs kazz?x

how can I joint that thread kazz (sorry I'm a bit useless) x

I'll post a link to it in a minute. Can't do it on my phone but going to be on my laptop in 5! The link to the spreadsheet is in the first 5 or so posts on the thread. I think March has posted it

claire, The rmc thread is here. The link to the info sheet is at the top of the stats list on page 1, although it's still a work in progress.

uNK testing at Coventry is 360 quid. One visit for consult and a uterine biopsy. Results by email then phone consult to discuss results and subsequent treatment plan.

Having said that, someone mentioned free testing for those on the response trial (but might be just those at Coventry), so not sure about that

thank you ladies xx

Thanks for posting the link March.

Just emailed my trial nurse. only to get an out of office saying she is on holiday until 8th February! obviously thinking the date is wrong but now I've no idea when she's back in!!!! Stress!

claire not sure on any costs involved in next steps... we see it as a positive though. We live in Northampton so not quite the trek that kazz has but previously we have just had the medical answer of "unlucky" so i guess any checks/help are a bonus... i literally had to stalk my GP to even get her to consider doing the standard tests following the 3rd MC.

We haven't thought that far ahead yet... one step at a time i guess!

Hope everyone is okay today? xx

Afternoon ladies, on this very rainy miserable Newcastle day!! Where has the summer gone?!

Been following your discussions about further testing and prior to the trial we were at a total loss as what to do next. We considered travelling to London for the NK killer cells tests but the top consultant in Newcastle told us it's a waste of time and money. She said even if the test comes back positive - there's no medical proof that the medication given for it can help fix the problem.
It was after this information I was frantically looking online for answers, and then came across the trial. Thank god!
In my opinion, I think some fertility places can feed from our losses and misery to make money. I would have happily paid a fortune to have the test and of course all the travel, but thinking about it, it would have been from sheer desperation and from what I was told, a wasted trip. It's obviously up to each couple and for some treatments may work - but I we advised against it.

How is everyone doing? Xx

I think the further tests at Coventry are around the £320-350 mark which I personally consider to be a lot less than expecting. Hopefully won't need to go down that route anyway. I think from my point of view if I don't succeed trial wise we will go down that route as I will need to feel like we are doing something. I know I will never look back and regret having the tests but I worry I may look back in the future and regret not going down every possible route to get our baby.

We have no children atm.so there is nothing I will stop at. My Sil recently had my niece at the age of 39. They tried for a baby for years without success before adopting 5 years ago. Then out of the blue my niece came along. She doesn't regret how things turned out but has said she wishes she'd pursued testing. She never had any investigatons done