I've finally got an appointment with Lesley Regan

[kissmummy]

I'd given up thinking it was ever going to happen. was referred by my GP months ago.
now the appointment has come through for two weeks time
Does anyone know what first appointments at St Mary's are like? perhaps i won't get to see her, and it could be one of her colleagues? the letter doesn't really make it clear - the appointment card just says it's at the recurrent miscarriage unit.
By then I should hopefully have all the results of tests we've had carried out privately so obviously i will take those along.

[just1moreplease]

good luck kissmummy let us know how you get on

[samoy]

hi kissmummy im currently being seen by the recurrent miscarriage clinic. I had my first appointment in dec- it was nt with lesley though i saw Raj Rai and he was lovely. It was a quick consult if im honest followed by lots of blood tests. I have since been back for repeat bloods and a HSG x ray and we will get all our results on the 16th of this month which is 10 weeks from 1st consult. You will be in good hands whoever you see im sure-just be prepared to sit around for a while. Ill post back on my results. If you want to ask anything more feel free. Good luck x

[samoy]

p;.s when is your appointment if you dont mind me asking?

[sh77]

That is really good news. Hope you get some answers.

Lunatic - any more updates about your clotting or other results? I am going back for a repeat clotting on Fri and then another 4 week wait for the results.

[Dozer]

Kissmummy, I am being seen at St Mary's but privately. At the first appointment they'll probably take lots of blood tests, including a special blood-clotting one called a "TEG" (thrombo-elastogram) that they only do there.

And probably an internal scan. If they think you need an HSG test that will happen later.

The tests come back quite quickly, except for the "karyotyping" genetic ones: if you've had these done already they won't need to re-do them.

[kissmummy]

Lunatic prepare for a battle even to get on to the private practice list My increasingly desperate calls went unanswered for weeks. I couldn't understand how they could not even ring me back, when i was leaving tearful messages (well, almost tearful . I was near enough begging them to call me back.)
My appointment is on Tuesday 16th and I'll def let everyone know how it goes.
Meanwhile I'm getting my test results back from a different private fertility hospital (the Lister) tomorrow. I went there after giving up on getting an appointment with Regan or Rai. It's taken months to get these results (a long wait for my cycles to return to normal after my last miscarriage; then christmas got in the way; then a five week wait for the results) so it will be quite a big day for us.

[coucoukitty]

Hi,
I am brand new to mumsnet and this is my 1st post so fingers crossed this goes through ok ! I had a 12 week ultrasound scan yesterday only to discover that there was no heart beat and the sonographer concluded that the baby probably died at 9 weeks. This is my 3rd miscarraige in 12 months and I am utterly devastated. I really thought it would be ok this time. I am now obviously classified as having had 'recurrent miscarraiges' and one of my friends recommended I look into seeing Lesley Regan. I live in brighton so not sure that I can qualify for an appointment at St Mary's ? I am really keen to see a specialist and thinking about private clinics but I don't want to forgo my right to have a baby via an NHS hospital. I have been told by the hospital that we can have tests but need to wait up to 8 weeks in between testing ?! Does anyone have any advice about this? I have read a few stories now about Prof Regan's clinic and it seems she has a high success rate. I just want to try and understand what's going on as I can't face another major disappointment like this. Can anyone advise ? Many thanks

[kissmummy]

hi there
poor you. I so know how it feels...
normally consultants like your cycles to have returned to normal before carrying out any tests, as the pregnancy hormones can distort the results.
Basically your options are

1. have investigations carried out on the NHS. Your GP can do some basic blood tests, which can rule out a few of the common causes of miscarriage. (anticardiolipin, thyroid problems etc.) You will then be referred to a specialist. I think that under the government's choice programme you could request referral to Lesley Regan, even though you're not in London. I managed to get a referral though St Mary's is miles away from our part of London, but it takes several months. A specialist at a standard recurrent miscarriage unit may be able to carry out a few more tests, but they don't cover all the possibilities. However, it's free, and it's a start.
   
2. Or you could go private. A typical first consultation with a private specialist in London is about £180. For that you do get about an hour and they take a very detailed case history. They can then carry out very extensive tests, MOST, but not all, of which are the same as those you'd get on the NHS.
   (Eg, I didn't get testing for Factor v Leiden on the NHS. That is quite a well known cause of recurrent miscarriages.)
   
3. One other thing to consider, depending on whether you can afford it, is an analysis of the tissue sample from your lost pregnancy . The NHS doesn't really do this, but if you had an ERPC privately, (which would cost about £1500-£2000 I think) they can analyse the tissue, and see if there is a genetic abnormality. I have not had this done, and slightly regret it. It can provide answers, but you'd need to get it done asap, as the value of the tissues diminishes the longer ago the baby died. [sorry if this is upsetting; can't think how else to phrase it.]
   I hope that helps. I've had four miscarriages so getting a bit knowledgeable about the whole thing now!

[coucoukitty]

Thank you so much ladies. It is really useful to have your advice and understand other people's experiences. I am so glad I found this website, it is a great support network as it is pretty isolating out there and there is no real follow up offered by your midwife. I will definitely be investigating so that I can find some answers. Even though I'm 37 I am sure my chances (and dream) of having a baby are still pretty good. Thanks for your help x

[pinguin]

I had my first appt at St Mary's last Tuesday - third miscarriage (actually ERPC) was in November, I spent the last 2 months annoying the very breath out of Yvette at the RMC to give me an appointment. To be honest the hardest thing was getting the utterly useless people at Homerton Hospital in Hackney (where I had the ERPC) to do me a consultant's letter. I'm with Prof. R herself - she really is the archetypal scary academic, isn't she? - where they did a pelvic scan and some blood tests - I think antiphospholipid antibodies. I've also done day 2 hormone tests - FSH, LH and testosterone and my boy and I have had blood karyotyping done.

kissmummy, I think you can get karyotyping of tissue from a pregnancy loss done on the NHS. I say I think, because Homerton claimed they would do this for me - have had difficulty getting the results out of them since then, conflicting info by phone and at the consultant appointment, then when St Mary's asked for the results they couldn't find them. It was almost worth all the pain of spending 2 months navigating Homerton's numpty bureaucracy just to hear the receptionist there getting her head blown off by the St Mary's receptionist. Was slightly hacked off though when Regan says to me "how hard can it be for them to just send over your results?" Oh yeah, ask me. You're the sodding NHS, not me...

Anyway, what was I saying? Yes, I think you can get karyotyping done on the NHS.

Also, Regan has done a book called "miscarriage: what every woman needs to know." It's useful, if for no other reason than it lists the tests you might get offered on the NHS.

[kissmummy]

hi pingin i've read her book. when i asked for tissue testing by the NHS after my fourth miscarriage the response was very vague. I fully expected to experience exactly the total ineptitude/lack of joined up communication you describe even if they did do any testing so I just dropped it.
It makes my blood BOIL how inefficient the NHS can be. Regan is right. How hard is it to convey results from one person to another? With my last miscarriage, the first thing the registrar asked me was "is this your first miscarriage?' I was totally because that self same unit had dealt with three of my other miscarriages. yet apparently they "don't keep records' - quite dangerous, you would have thought! But that is the NHS in London for you.
If i have another miscarriage I will find the money for an private ERPC so we can get tissue testing without having to go into battle for it.

[pinguin]

kissmummy, who knows, maybe there were reasons why they couldn't do it... you'll never know though because they're always dead vague, trying not to upset you or something. I don't know. My last pregnancy was a twin, the first one died straight away, and I had some bleeding. At 5 weeks (I had bleeding + therefore many early scans) the sonographer put a comment on my file, I read it while she was out of the room, it said "suspected second gestational sac" but she didn't mention it to me. Then at the 7 weeks scan there was one heartbeat and I asked if there had been another embryo that died and I was told no, it was probably just a "shadow" on the ultrasound. Then I went for a private scan at 10 weeks and the sonographer told me there was clearly one that had died at about 7 weeks and one that had died at 5 weeks.
It's like, who the hell cares about my twin pregnany other than me? Those wee things existed for like two or three weeks after conception and the rest of the world just never knew that they were. The ONLY person that gives a toss is me. And they wouldn't even tell me! To spare the feelings of someone who's already had two miscarriages. As if they could possibly know what I wanted to feel. Going private is brilliant, you can just tell them how to do it and they nod and smile and do it and then get you a cup of tea.

[coucoukitty]

Hi Kismummy, pinguin. Sorry to hear what you have both been through. It is so tough to deal with. This is my 3rd mc now and as I am approaching 38 I really want to understand what is going on asap. I have made an appointment to see my GP this weds and really want to push for a referral to Prof Regan's clinic (even though I live in East Sussex)
From what I can gather I need to go into battle with the GP to actually get a referral (!) and will have a bit of a wait. Do I need a letter from a consultant to say I have had this 3rd mc? I didn't get anything from the hospital. I didn't even see a consultant there. I saw a nurse/midwife. I was only given a couple of leaflets explaining about the options to manage a mc. Excuse my ignorance but what is the RMC ? Just would like to know what documentation I might need to ensure they get me a referral. Thanks for your help.

[MegMum25]

Hi KissMummy, CoCo and Pinguin
KissMummy -Did you get your results from the LIster? I was there for NK cell repeat tests and FSH etc last week and wondered if you were alos in the waiting room. I am so sorry CouCouKitty and Pinguin about your losses and commend your herculean efforst to get answers. I know how this feels. I saw Raj Rai from RMC at St Mary's via the Zita West clinic which meant I had to pay but I bypassed the interminable private waiting list and found him thorough and good although beear in mind that RMC do not accept the killer cell theories. I am now ttc again, and very very appreehnsive. I sincerely hope it all turns out well for us, you are right to keep dreaming and looking forward. Keep me posted on all your developments and results xx

[CMOTdibbler]

COucoukitty - unless things have improved drastically in Brighton since I saw the consultant there 3 years ago, I'd really push for a referral. For a start, the consultant didn't really specialise in recurrent miscarriage, scans were carried out in the antenatal department, and he had no sympathy at all.

And when I had my ERPC in Brighton (rather than Haywards Heath were I was before), they promised to take a tissue sample for karotyping. As I knew it musn't go in formalin, I was even checking this with them when in the anaethetic room. When the junior doc came round, she very casually said 'oh, we won't do the test as it went in the wrong solution'. Was generally terrible

[coucoukitty]

Hi Cmot, Megmum

Thanks for your replies. Unfortunately I don't think things have improved since you were last here C! To be honest, the people dealing with me at the hospital were so unsympathetic and sounded like they were reading from a script when they were breaking the news to us that there was no heart beat. I honestly thought she was joking ! It was a horrible experience and it felt like they couldn't wait to get me out of the room to deal with the next person.
Anyway as I decided to go down the natural mc route (I had no idea you could examine the tissue - something they also forgot to mention) so looks like I am relying now on tests. I am determined to see someone who can take some time to understand it all rather than being 'fobbed off' and being none the wiser! Will keep you posted x

[CMOTdibbler]

Sorry to hear that things haven't improved - I did make an official complaint after my third miscarriage about the 'care' I recieved, and I think some things did change at HH afterwards, but Brighton was terrible. It was only that I knew what to ask for that I even got offered tests - had to make the junior doctor get the file out to check what was supposed to happen for recurrent miscarriers, and then make her do what it said