Anyone been referred to St.Marys or paid privately?

[lovemysleep]

Has anyone been to St.Marys recurrent miscarriage clinic?
Had my 4th mc in June, and am desperate to try again, but need the support of some specialist care. Test were done after my 2nd mc, but all clear.
Sister in law is pregnant again, and this has almost tipped me over the edge, as both of hers coincide with my mc's and when they would have been born. Am obviously madly jealous, and just cannot go and see her, as I feel like she is getting my babies (mad, I know, but 4 mc's do this to your sanity!!!!).
I am lucky enough to have a 5 yr old daughter though.
Researched St.Marys, and reckon it's about a 3-4 month wait, or I could go privately - I am that desperate, that I would pay serious money to try to get some answers.

[sotough]

hi there, so sorry to hear this and hope i can help a little.
my situation is not massively dissimilar to yours, in that i have a lovely little boy who has just turned three. however, after him,i had four miscarriages in a row, all around the 7-9 week mark. it has been an absolutely devastating experience. as you know, one mc isn't too bad; two seems pretty grim; by the time you get to three you're shattered; and when you have a fourth you get really, really scared because it seems there must be something seriously wrong and you start to fear you will never have any more children of your own...(how people manage to cope with even more than four consecutive MCs, i just don't know.)
anyway, after our third MC, we had various tests on the NHS, which showed nothing. we were advised to leave it six months - a waste of time as it turned out - and just keep trying. i was prepared to accept the 'just bad luck' theory at that stage and so we had another go, which resulted in MC no.4.
when that happened, we decided to throw everything possible at the problem, both time and money.
i found a sympathetic GP at our surgery (they weren't all very helpful) who, after i was quite pushy, did refer me to St Mary's. It took about three months to get the first appointment. Meanwhile, we went for the full range of private tests at the lister hospital, where they also test for NK cells. (St Mary's don't.) We saw Yau Thum, who i would recommend. This cost about £1500 in total for the consultation and the tests.
It was basically almost impossible to get a private appointment with Lesley Regan (i left multiple, increasingly desperate and pitiful messages on her answer machine) though you might have slightly more luck with her colleague Raj Rai.
However, my advice would be to get all the private tests done at the Lister or elsewhere (they will test for quite a few things the NHS doesn't bother with) AND wait for an NHS referral to St Mary's. St mary's are used to patients having private advice as well.
Once you're in St Mary's "system" you will get a lot of care with them, so it's worth the wait. They also have very slightly different testing protocols, so although you might well feel it's not worth going through yet another batch of tests, in my case, it did yield some new information and was worth it.
I got pregnant again in the spring and this time have been taking clexane (blood thinning injections) and took steroids for the first three months for possible NK cell/immune issues. We never had a conclusive diagnosis for anything, so my treatment has been experimental. The clexane was prescribed after one of the tests at St Mary's revealed a possible blood clotting issue, but the evidence for it wasn't strong. (only 1/4 repeated tests was positive.) The steroids were prescribed by the Lister.
I am thrilled to say i'm now 23 weeks pregnant (yay!) and things appear normal! i really hope that you get the help you need, so you can leave no stone unturned in your search for what's wrong.

[prettydaffodil]

Wow, sotough, that's a great story - congratulations.

I had 2 miscarriages and then, out of desperation, had tests done privately. They proved inconclusive an said there was no issue, it was just bad luck. i suggested to my gynae that I take aspirin and he agreed it was worth trying.

As a result, I've had 2 agonising pregnancies where I bled until about 20 wks but had 2 perfect children. Although my DH needs persuading, I'd love another baby but don't think I could cope with the worry of bleeding in pregnancy again.

I've heard such fabulous things about St Mary's and would do all I could to get a referral there, if I could persuade my GP. As Sotough found, I would say it is worth all you can throw at it. The good news is that there is likely to be a reason for 4 consecutive miscarriages and that most such reasons are likely to respond to a form of treatment. Good luck, I really feel for you xx

[lovemysleep]

thanks everyone for taking the time to get back to me - i really appreciate it. I am really impatient about this, so am tempted to do the whole thing privately and do the NHS route too - thanks sotough for this advice, and it's lovely to hear that you are pregnant - congratulations.Lunaticfringe - that was some speedy appointment time you got!! - do you live close by? Or was that just good timing? And have been pouring over Lesley's book recently, trying to make some sense of this! Guess you all know how much research you do in pursuit of answers, and to try to get some control back!
I get the fear every now and then that I'm messing with nature - I'm 39 in January, and just wonder whether nature is telling me that it's not wise to get pregnant! Mind you, I did have my first miscarriage when I was 32 - hardly ancient, really. I think it's just how your mind works after several mc's. What i can't understand is how I can have a textbook pregnancy with my daughter, with no health issues at all, and then have all these mc's. It just seems bizarre to me.
Anyway, thanks again everyone - you've been a great help......will keep my eye on the testing thread

[sotough]

your age is highly significant - 39 is a whole different ball game to 33, which is what you must have been, roughly speaking, when you had your successful pregnancy with your daughter. you don't say over what period of time your 4 MCs have taken place. if they're all since you've been at least, say, 37, then I imagine egg quality could be a major factor. if however your successive MCs started when you were under 35, that is likely to suggest a different issue. the MC you had at 32 (presumably before your successful pregnancy with your daughter) may not be medically significant in terms of suggesting a basic problem..i'm not a doctor, though! just amassed more knowledge than i'd like to have on this subject!

[lovemysleep]

1st mc was a mmc, found at 9 wks - blighted ovum. I was 35 with the 2nd - around 10wks, fetal growth stopped at about 9wks 2days, 3rd mc, I had just turned 36, and happened at virtually the exact same stage as the 2nd one. 4th mc, this June - I'm 38 now, and this was the earliest mc - just found out I was pregnant, so was just over 5 weeks. They just found evidence of a mc, whatever that meant! I have a feeling that the 1st and last one were maybe a case of bad luck (on a good, optimistic day!), yet the 2nd and 3rd were so similar in terms of timing, I think that there could be an underlying cause.I didn't try after the 3rd one, as I got very depressed, and couldn't cope with the thought of getting pregnant again. In fact, i had decided not to have another child, and this last pregnancy was a surprise, which has made me want to try all over again, despite miscarrying again. I know I am going to be battling egg quality now, so have been eating healthily, taking lots of vitamins and barely drinking for the last 3 months - and hubby too. I went to see a nutritionist after my 1st mc to help me conceive - she got me to control my blood sugar and eat very healthly,with lots of supplements and thats when I got pregnant with my daughter. So, that's either a coincidence or maybe there is something in that.

[lovemysleep]

Oh, so does the consultant always have to rubber stamp the referral? I didn't realise that you had to do that first - so basically, I would have to wait 6 weeks to see a consultant, and then go from there.
Why was the consultant so reluctant to stamp yours?
I am already slightly pissed off that the local EPAU didn't mention or know about St.Marys - you'd like to think that they would make it their job to have some kind of specialist avenue to pursue for recurrent mc sufferers. They were lovely, but I'd have preferred to be better supported really.

[lovemysleep]

Have booked a private apptment - but it's with Dr Shehata, as he seems to be the one who works at the Miscarriage clinic recommended in the back of Lesley Regans book. sotough - you wnet via Zita West, to Yau Thum, didn't you?Will quickly do some research there too. Don't quite understand how you contact St.Marys, request a private appointment, yet end up with Dr.Shehata, at what looks like anothe clinic.....am v confused, or quite possibly being a big muppet!!!!

[lovemysleep]

Lunaticfringe...that's awful! I didn't realise your dd2 was a stillbirth - so sorry to hear that. I am sometimes shocked at the level of care given out, or the insensitivity of these people. After my 2nd mc, I had a consultant ask me if I was ready to ttc again, and I said that I needed to work out if I was able to cope with another mc...in a really sneery, sarcastic voice, she said "Well, there's nothing like looking on the positive side of life, is there?" I was so shocked and later, angry. And when I went on to have another 2 mcs, I wanted to ring the woman up, and tell her, so much for bloody thinking positive!!!! For a "caring" profession, they are riddled with some cold people.
Thanks for your help - hope I'm not causing you to dredge up painful memories.

[lovemysleep]

LunaticFringe....wishing you lots of luck with this pregnancy.
Big poky stick would be great...or the ability to shoot lazers out of your eyes, and leave a wisp of smoke in their place would be good...hehehehe.

Am about to phone the Zita West clinic - after all my tooing and frowing, have decided that would like some continuity - sounds like sotough did it through her, and Raj Rai works at St.marys too, so maybe that will be better.

Can't believe I'm nervous...guess there's always the worry that they won't find anything wrong, but at least you are somewhere supportive.

[sotough]

hi lovemysleep, yes, Zita West was our starting point. i actually thought she'd be full of 'drink green tea' crap which would not have gone down well with us after four miscarriages, but she was very brisk and efficient, immediately said there was obviously a medical issue, emphasised that it was probably something quite minor that could be easily resolved once identified, and generally made us feel we had a plan, which is very helpful when you're feeling so devastated and overwhelmed.
she referred us to Yau Thum, but she also has links with Raj Rai. I would not personally spend time or money going private with Raj (he doesn't investigate NK Cells) as he will cover the same things you can get for free on the NHS at St Mary's (where he and Regan are based.), unless of course you can't get referred to Mary's.
One possible option if egg quality turns out to be your problem is a form of PGD at Nottingham CARE unit...

[lovemysleep]

sotough - thanks for that - have an appointment next thursday, with someone called Anita at Zita West. Will make sure I make a note of Yau Thum to mention to them at some point.
Glad she's as brisk and efficient as you say, as I was a bit concerned that they would suggest airy-fairy stuff - I have already been taking vitamins, cut right down on drinking etc for the last 3 months. I regularly see a therapist, as she was so brilliant helping me deal with the mc's, so don't think I need any of that either.

I just basically want the medical tests. Are these NK cells worth investigating too? have Allen Beers (if that's the right name) book, and he goes on about those. I understand that St.Marys are not behind these either.

I am going to be a right royal pain in the
butt to fight my way to get referred to St.Marys........am beginning to realise that i may need to be!

What's PGD?....don't even want to consider that my eggs may be buggered!!!!!!

[sotough]

lovemysleep can't you get an appointment with Zita herself? or is Anita equally experienced?
at your stage I think it's well worth investigating NK cells. The lister will do all the medical tests, including for NK cells, at once. NK cells are treatable with steroids which do not cross the placenta and so are very low risk to the baby. although scientific opinion on their significance in relation to miscarriage is deeply divided, the evidence to support the theory is increasing, and there are signs that even St mary's is beginning to reconsider its stance on it.
DH and i took the view that in the absence of any other explanation for my losses, we didn't have much to lose, and might possibly have an awful lot to gain, for taking the treatment for NK cells. we opted for steroids - the cheapest and least scary form of treatment - which don't cross the placenta and are therefore low risk to the baby.
PGD is preimplantation genetic diagnosis, where the quality of the embryo is examined and tested before it is placed into the womb (as part of an IVF procedure.)
This can 'weed out' flawed embryos, eg, ones that have a chromasomal disorder. The science is still in its infancy, and i don't know about success rates.

[lovemysleep]

ok - will make sure we do Nk tests too.

The receptionist reaasured me that Anita is experienced - I just think it takes longer to get an appointment with Zita, and because she's the name behind this, I guess most people would prefer to see her. I'm going on the principle that she wouldn't put her name to people/or employ them if she didn't rate them.....hope I'm right!

Am a bit wary about IVF at this point...only because I would worry about the drugs you have to take, and I've heard that these can knock you about a bit. Time will tell, I guess.

Just trying to get my head around everything really. I'm positively crapping myself about the whole thing for all sorts of reasons - even REALLY worried about it actually being successful! I know that sounds nuts, but I think all these miscarriages have clouded the whole pregnancy thing so much...I worry about the disuption a baby would bring, whether it would be healthy, what it would do to my daughter, if I'm too old and will get too knackered coping with 2 kids etc. I think the whole thing makes me feel so vulnerable basically, despite the fact that I would love another child.

Ever get the feeling that you think too much??? (wink)

[sotough]

i understand lovemy - the thing is about all the disappointment that goes with one miscarriage after another is that you begin to 'rationlise' your situation to yourself and try to think of all the good things about not having more children.
i'm still slightly in denial myself at 24 weeks pregnant. I have to tell work in the next few days but have spent so long keeping it quiet it seems a bigger deal than ever and i almost have a kind of psychological barrier to breaking the news.
plus i've genuinely no idea how i'll cope with the sleep deprivation that goes with a very small baby. i hated that bit first time round....

[littlemiss72]

I have an appointment arrnaged with Prof Lesley Rean for the 22 Nov, I have arranged this privately however the wait was still long!

I have had 2 MC this year, 1st was at 10 wks and was a MMC and the 2nd was at 6wks. At 38 I don't have time to hang around, I'm keen to give myself the best chance possible, thankfully my private healthcare seems to cover some of the initial treatment.

I was lucky with my GP who studied with this woman many years ago, she was extremely helpful and helped me contact her PA and I got an appointment. I have heaps of paperwork to complete before my appointment but I'll give anything a try right now.

Getting pregnant just seems a scary thing right now, the fear of yet another MC would be too much to take.

I feel for you all and sympathise with your stories, it's heart renching stuff. x