Recurrent Miscarriage Support - tests, treatment, trying again - thread 10

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

So, here we go again... Positive.

Please don't congratulate me, sprinkle me with baby dust or wish me luck. We all know this might will be over in a few weeks.

Practical advice please. Should I email Coventry and let them know?

OK, maybe just a bit of happiness in there... x

Just a little smiley face Tanny? it's a positive step eh? Best of luck.

One more question. I have weird cheapo private healthcare through work (civil service). I assumed all fertility related stuff would be excluded (most things seem to be) but they have said that diagnostics and consultations are potentially covered if I have an nhs referral but the waiting lists are long. They will consider my application when I have the referral. It has to be to a consultant that accepts both nhs and private patients (told you it was weird). Would that apply to St Mary's and is it worth pursuing do you think? If not St Mary's can you think of anywhere else suitable, preferably in London? Thanks everyone.

Sorry - should have googled before troubling you all. It looks like some of the consultants at St Mary's will accept private patients. Only one under 'maternity' is a professor. Prof Bennett. Most of you seem to have mentioned professors. Are all consultants professors? Sorry- have been generally outside the hospital world for most of my life.

tanny do email Coventry... it's what I will do if it happens in 2 weeks...

Did they give you the cyclogest? continue to take it until told otherwise...

Have some at least

lurker in London I went to St Mary's

Apparently the Royal Free also has a RMC unit but I had to see one of the consultants there on my last mc and I wasn't too keen on him, a bit too impersonal...

Where in London are you? I think one of the doctors who researches NK cells is in Epsom somewhere south (I am North London so don't really know about south London hospitals)

Thanks for the and !

Yes, been on progesterone for five days, so keeping that up. I have 3 months worth of heparin too!

Emailing as soon as the mice in my ancient laptop get on the treadmill!

Keep us posted as I am hoping that will be me in 2 weeks or one month and 2 weeks?

Hope so too!

Tanny - omg you are super fertile!! Hope this time with prof q protocol it will be a sticky one. Have you had your nkc results back?

Longest - st Mary's do accept pvt patients. I went to Dr. Rai. You just need to contact his secretary via email. Let me know if you require details.

pleased for you tanny ( does that slide under the "congratulations" veto?) Definitely phone Coventry and chase results, they will want you on steroids if your NK levels were high.

lurker if someone is a Prof it means they've been in academia/research, often as well as holding a clinical consultant post. The doctor mentioned in Epsom is Dr Shehata, there is also Dr Gorgy based in London who treats NK cells.
St Mary's accepts NHS and private patients, you would want to see Mary Regan or Raj Rai. They do a more comprehensive version of the NHS tests but not NK cells. It's the leading centre for recurrent miscarriage in the UK, if you can be referred there grab it.

tanny have you had your results from Coventry? Maybe a phone call? I'd be far too impatient to wait for someone to return an email.

We've managed to get an appointment to see the consultant on 7th July to discuss the possibility of tests. The nurses asked if this was our second miscarriage (yes) and whether the last one was a natural conception (no) and didn't seem to dismiss the idea of tests as readily as they did last time. Fingers crossed. Unfortunately the scan showed that it hasn't all gone yet, so I can expect the bleeding to continue. They're going to do a blood test when I go in on the 7th to check the hcg has gone back down.

Barking That sounds good about the tests at least. Good luck.

Thanks for the info about consultants everyone. Tiny I am in North London too. My local hospital is the Whittington which is where I will go on Wed for my follow-but up scan at EPU but I can get most places fairly easily. I am not sure if my cover would apply to NK testing anyway if it's not something the NHS offer. They basically cover things when the nhs would treat you but the waiting list is long enough yo cause 'discomfort and distress' or something. Even if I can just use it to speed up the NHS tests though that would be something, and if it includes the extra ones St Mary's do even better.

Lurker I am across the Heath from you, my local hospital is the Royal Free.

I used to live in Archway 14 years ago!

Just make sure you read all the small print on the insurance... a friend of mine needed some investigations as she wasn't getting pregnant, but for infertility their would not pay but she got the doctor to refer her for "period pains" and that was covered by her insurance

Ah that is nice Tiny. I am not quite in Archway but not far. Yes, I have checked and miscarriage and fertility diagnostics are covered but they make a discretionary contribution depending on the waiting list so need to find out what that would cover, what the rest would cost and weigh that up against the waiting list for nhs consultation. Dr Rai appears to meet their criteria so will send some emails and make some enquiries. Thank you everyone.

Thanks everyone. Am still a bit that I'm here again! Yes we really are super fertile, I think DH has supersonic sperm...

I phoned Coventry and they're going to rush my results through early next week. They've offered me a scan next Friday if I'm local (I'm really not), but I might phone my epac and see if they'll do it on Prof Brosens advice.

I'm the meantime, keep using progesterone.

Trying to practice mindfulness and distract myself with tennis, with absolutely bugger all limited success.

Just and Tiny please please let this be your month, for purely selfish reasons... I don't want to do this without you!

Ladies. Can I ask a really gross question? Please don't read if you're eating or don't have a strong stomach. I have been trying to save the product for testing as you recommended. I think I might just have passed it but how do I know? Will there be lots of horrible meaty stuff as well as the actual sac? Is this first lot just the beginning? Bearing in mind I as m only measuring about 5 weeks?

And wtf do I do with it? I am not due to see epu till weds but presumably it won't store till then unless I freeze it? Sorry, and thank you so much. I am not sure what I would have done without you all the last few days.

Sorry lurker. I don't know... Personally I either had erpc or just flushed...

I hope someone can help you.

lurker fridge not freezer, save anything that seems to be more than just clot, and deliver to EPU or gynae department ASAP. I'd phone them and see if you can drop in whatever you've passed tomorrow. hope you are ok, it's grim but worthwhile.

Bakingtins, thanks for getting in touc and congrats on Baby Faith, she must bring you such joy and she's wonderful news to this community. Hi to everyone, I have been on a MN hiatus for a while- just needed to stop the obsessing. I'm a bit fragile these days, all the TTC hopes and bouts of disappointment and sadness have finally caught up with me.
Resipsa, my DH was diagnosed with cancer (T3) at this time last year, a week after MC3. I am so pleased to say he's been finished chemo and radiation for months now and is thriving. I know how difficult that diagnosis is and all that the fertility stuff feels like a selfish afterthought. But please please be sure to freeze a sperm sample or two before chemo starts. It gives you options and the peace of mind is worth the ordeal. DH was treated in the Bart's NHS Trust and they have a reproductive med unit hat arranged it all for us- we have private insurance but this was all through the NHS. You will get the all clear about 3 months after chemo has ended but it depends on where the cancer is located. I wish you and your DH all the very best and please PM me if you want moe detail or to chat to someone who knows how you are feeling. Also, call MacMillan- they are amazing.

Tanny, tiny little yay to you. Phone signal crap here so will catch up tomorrow.
Think its a bnf for me (am I infertile now?)

Tanny, tiny little yay to you. Phone signal crap here so will catch up tomorrow.
Think its a bnf for me (am I infertile now?)

Tanny, fx your one of the next success stories hun!!! We're all hoping for you!!! but no congrats here, just lots of sticky baby dust.

Hi all
Sorry to gate crash, just after a bit of advice really.

Bakingtins, you've been fab at dishing out you wisdom so anything you'd like to tell me I'd like to know!

I had my 6th mc last weekend so I've been for a follow up appt yesterday afternoon with Prof Brosens who works with Prof Quenby who is on hol.

He was very clear and explained everything. It was the first time things made perfect sense!

Basically my body is either rejecting everything, healthy or not, or not being picky by letting the embryo stick, even if there is something wrong with it, but then letting go.

My body needs a reset as it were so basically this month I'm bolloxed. We are to stop trying for 2 months, and the 2nd month post last mc they are going to do the uterine testing for Nk (natural killer) cells.

He said recurrent mc is more common if your previous pregnancy was a boy too, who knew!

However, due to the fact I am ovulating at the moment and not taking precautions, chances are I may catch again this month. If i do, i do, there's nothing I can do about it now. You never know, I could carry it this time!
If I do have another mc though, I've got to wait I would assume ANOTHER 2 months?? Would this be right?
Then the results are up to another 6 weeks, so it's going to be a long wait!

If I have high nk cells I have to take steroids, heparin and something else I can't remember. If all is normal, I just bin the steroids and they'll put me on the other 2 things.

He didn't mention cost of the testing at all (I've read it's about £360!) so I'm not sure if it's now free or whether I'll get slapped with a bill! I've not mentioned that to dh as I want this test!

So basically I'm on hold and a bit gutted :(

I can't remember what happened with some of you, or bakingtins so some info would be great, thanks.

Morning choccy !

The "other thing" would be progesterone pessaries. I think you are right about the 2 months. I was seen last year after one normal period ( so it was about 8 weeks post MC I was seen) but I think they have altered their protocol since and you have to have had 2 periods, then be 7-10 days post ov. I know it feels like time is slipping away whilst you are waiting, but TBH it does you good to have a break from it all, use the time to be healthy, look after yourself and heal emotionally. AFAIK all of us have paid privately for the testing, it's not normally available on the NHS, but if you are already their NHS patient and they recommend it for you maybe it's covered? I'd contact Kerri and ask, so you know if you need to be saving up or not.

Thanks baking tins. I'm already on cyclogest, I'm sure he said something else, but may not have, I was just trying to take it all in!
Did you have raised nk and catch first time?