Recurrent Miscarriage - Referral (Wales)

[PurplePansy05]

Hi. I've just had a confirmed third miscarriage (MMC, early miscarriage and another MMC, this time blighted ovum).

Waiting for my follow up scan next week.

I'm wondering where to go from here, I'm now officially a recurrent miscarrier. What is the referral route in Wales? Can someone help please, I don't know where to go from here. Thanks.

Up. Anyone please?

Also how do you go about the referral to Tommy's? On the NHS or private, I don't cars?

*care

I'm sorry for your losses @PurplePansy05. I've had 3 now too, 2 MMCs and 1 very early loss.

I'm on a fertility pathway, so my consultant referred me last year, but your GP can refer you. I have had recurrent mc blood tests but no answers with those.

I am under Birmingham Tommy's clinic and have self referred to the Tommy's clinic in Coventry for the implantation clinic, which I paid privately for 2 biopsies to look for nk cells. Only had one and everything shut down - but one result came back normal anyway, so not sure that will give me answers.

You can also ask your GP to refer you to Professor Quenby - she's at Coventry - I think that would be an NHS referral. I'm not sure if recurrent clinics are open though.

Sending love 💜 xx

Just thought, if you're back at the epu next week, you could ask them to refer you for recurrent tests too x

Hi @VenusStarr, thank you for replying and really sorry to hear about your losses.

I appreciate I might not be seen by anyone right now and possibly not for the next few months. My mc hasn't even started yet, so it will take some time, I get that.

Spoke to my midwife, she helpfully said the EPU will call me on Monday and what was supposed to be my 12 week scan will be brought forward (I'm/was 11 weeks). She said the EPU would do a referral.

But this is where I'm confused, can I ask for a specific doctor? I read about Prof Quenby and she'd be my preferred choice due to location (I'm in Cardiff - miles away, but still she's the nearest Tommy's RM specialist, there are no RMCs in Wales). I'm willing to pay, both for the specialist and for tests to have them done as soon as possible to speed things up. I'm approaching mid 30s and it's just becoming a nightmare tbh. How did you go about the self-referral to Tommy's if you don't mind me asking?

I'm also confused what to do now, whether to try again after this mc or leave it till after my tests - but as you say, it might take ages before I have any results. I really don't know what to do.

I should add DH and I had the initial consultation with a private consultant and there were no issues for either of us, although I've never had detailed tests done.

What were you tested for, karyotype, APS, NK cells, anything else?

Sending lots of love too, what a mess this is right now! ❤️ Xx

Sorry to be a pain, but one more (personal) question, appreciate if you'd rather not answer - in terms of management of this miscarriage, should I insist on having a D&C this time so the tissue can be checked?

It's really hard to know what to do @PurplePansy05. We initially held off ttc as we wanted answers, so after my loss in February, we paused to do the nk cells tests. But then covid shut everything down (my biopsy was cancelled on the day). I've had the anti-coagulant, lupus, APS tests which are all fine / normal. The Tommy's consultant in birmingham was lovely (I was referred to this one - not self-referral), but all they'll offer is early scans - until I've had a 4th loss they won't prescribe progesterone. I've not had any babies tested as I miscarried naturally between scans, so testing the baby is something we haven't had.

For the Coventry implantation clinic (which is linked to the Tommy's clinic there) I just googled the details and called up. You have up not ttc and track your ovulation, so have the biopsy between 7-10dpo. You call up when you ovulate and get booked in. Professor Quenby oversees the clinic, but it's Professor Brosens who you see. Although I haven't yet because I booked late for my first one and he was on holiday - it's £540 for 2 biopsies and a consultation.

To see a professor quenby herself, you need a GP referral - if you go to the Coventry and Warwickshire hospital website, her secretary details are there. I haven't done that yet though.

I'm 36 and we've been ttc for 2.5 years, so we are waiting for ivf (officially unexplained, although I think it's subfertility as we had no natural pregnancies for nearly 18 months, now 3 naturally concieved pregnancies / losses in a year) we wanted these tests first and then depending on the results, go ahead with ivf.
We've started properly trying again now, I can't hold off any longer, especially as we're no closer to any answers.

Glad the epu will refer you. Sorry, that's longwinded! But hopefully it helps a bit. I definitely feel better knowing my options ❤️ xx

Thank you @VenusStarr. Tommy's website and NHS Wales sources aren't very clear as to the Tommy's RMC referral route or referrals to see a particular consultant in England (eg Prof Quenby). I emailed Tommy's to enquire about this and I'll also ask at my EPU appointment on Monday. Very annoyingly, from what I read there might not be an option for such a referral but I'll see what they say.

I'm slowly working out a plan in my head. If I only get a referral to a random local gynecologist not specialised in RM, I'll go to one of the local private clinics. There seem to be two specialists in the area and the tests they offer are very much in line with what you've described. I'll then try to get in touch privately with the implantation clinic in Coventry - sorry for my confusion, but is this the one that looks into NK cells testing? If so, then hopefully I'd end up with the full range of tests done.

I think I'll start ringing them up as soon as this mc is out of the way and decide whether to ttc again or hold off depending on whether they're open. I don't want to wait for results for months and months because of Covid, especially that there's only a 50/50 chance that a cause may be found, isn't there?

Do you reckon the fact we got pregnant three times in 18 or less (it was 14/15 months for me) is a good sign? Did we just have a shit luck to be where we are? Are we going to be like those women that BBC writes about "X had 6 miscarriages", "Y had 10" and here are there rainbow babies, their pregnancies just randomly, finally went well?

I don't know if I want to keep trying for the next 7-8 years when I'm in my early 40s. It seems mental.

I also don't know how IVF could help, unless a genetic issue is discovered. It has crossed my mind, but would it improve the chances in our situation?

What do you think about all this? Xx

PS I'm feeling a bit weird now, because it's blighted ovum it's not really as bad as before as I've not seen the baby, it's just not there. I don't see the reason to grieve now, I'm more so annoyed it was another waste of precious time and it's took me back to square one, or even further back again. I'm worried about the future, is there something wrong and DH and I will never ve able to have kids together Maybe I'm becoming a cold person now, a miscarriage veteran or what? Xx

Hi @PurplePansy05 how are you? Sorry for the delay, yes the Coventry implantation clinic is the nk cells testing. They're not open at the moment but I'm hoping it will be soon - their fertility clinic has now reopened, so don't think it will be long.

I think that's where I'm at now, that we probably won't get an answer, so we might as well keep trying. I'm thinking oh is bad luck sadly. I know that my recurrent mc consultant did feel that getting pregnant was a good sign - we can conceive. I can't remember if I mentioned before, but I think I might try low dose aspirin if and when I'm next pregnant - I've been told it won't harm anything and particularly as we don't have any answers it can't hurt. I also want to try progesterone, but not sure my GP will prescribe it - the Tommy's clinic won't until I've had 4, which is crazy as thrive done research to suggest it can help.

Completely feel you on the how long do we keep trying and going through this? But I'm not ready to stop yet. It's really hard.

I don't think there's a right or wrong way to feel about this pregnancy loss. I know what you mean about just wanting it to be over and feeling like it's set you back ❤️ I was definitely similar immediately after my third loss, like I've come to expect it now. Which is horrible but that's our experience I guess.

Hope you're doing OK and sorry for the late reply xx

I wanted to recommend this book to Op and anyone else who's interested. Someone recommend it to me on a MN thread and it's been invaluable to me. It's clear and covers everything I could think of.

I'm also in Wales op and after my second miscarriage referred to RM (as one of the miscarriages was at 29 weeks) but I'm still not sure what that has meant? Covid came and everything stopped. I'd had a letter saying we have had a referral and they will contact me when they have an appointment for me. That was 4 months ago. I didn't ask for a specific dr as I didn't know that was an option.

Thank you both for your responses.

I went to the EPU yesterday for a scan, it is definitely a blighted ovum MMC.

I have been referred to my newly opened RMC which I didn't even know existed! What a relief. @footprintsintheslow An RMC opened last year at the University Hospital of Wales in Cardiff (the Heath).
I couldn't believe my luck when I heard about it. My first MMC was before it opened I believe, second was natural at home and it's only now that I found out there's been some movement on this front in South Wales. I'm Cardiff-based and unbelievably, for years it appears there was no deal at all with NHS England here, only parts of North and Mid-Wales could get referrals to Liverpool or Coventry. Now, finally, things seem to be looking better!

The RMC is closed for face to face appointments now due to covid. They are running consultations over the phone, but in any event, my appointment will take few months.

Yesterday I was welcomed by a lovely consultant, infertility specialist who has been temporarily redeployed to the EPU.

Honestly, so lucky, the nicest doctor I've ever spoken to. I have my MVA next week. There wasn't even a question on that after she discussed my history in detail. She was wonderful.

Since it's blighted ovum, there is no actual baby, there's an empty sac and placenta. This material will be subject to genetic testing. I was also told that even if my MC starts naturally earlier, I can collect it and bring it in asap, at any time, 24/7. That's really helpful because they may come across something useful for my RMC appointment. The results of genetic testing which will take at least 13 weeks. The RMC appointment will follow that.

Tbh, it's not an ideal place to be in, but it's the first time I've been treated with dignity and kindness by the NHS after the miscarriage. And it makes all the difference, I'm unbelievably grateful for that. It's been a very hard 15 months for me and DH. I burst into tears at the EPU when I was thanking them.

Importantly, @VenusStarr, the consultant yesterday specifically recommended to me that if I get pregnant whilst waiting for my RMC appointment, I should be on baby aspirin from the BFP and on Cyclogest which the EPU will prescribe for me. I am definitely going to do this.

Whilst I truly hate TTC, I would like this to be over and to start afresh asap. I think this has made me more determined than ever. I'll give it at least 2-3 more years and see how I feel then. I read up a lot recently on adoption and I'm clear that if things don't ever go to plan, this is the alternative. I think I need to have a child, I'd go mad without having any. I also know that we're particularly unlucky but I'm fed up now of dwelling on my bad luck, this is what's made my life really hard in the last year. I think I'm at the stage where I've accepted it and I know the road will be rubbish, but I want to get on with it. Pity party over myself or sorrow from others won't help me carry the baby. Getting pregnant again and trying new things with medical assistance will. I think I now accept that I'll never enjoy a pregnancy and there will always be that risk present of me being again in the same place I am in right now. I can do it, though. It's nothing new.

One thing I need to develop is not giving a shit about other people's pregnancies and kids because it doesn't help. It's like being jealous of someone's inheritance when in reality people have no influence over some things in life, they're not lucky by choice and I'm not unlucky bo choice either. It just happens and I've got to do what I've got to do.

That all sounds so positive. I'll ask about going to the Heath when the time comes. My local is the Royal Gwent.
All the best next week, it's a horrible thing to have hanging over you but it sounds like things are hopeful going forward.

Thank you @footprintsintheslow. I'm actually ok with this, I was really worried having read stories that they only offer medical management or expectant management because of covid. I was very sick because of medical management and really didn't want this to happen again. Also considering it's blighted ovum at nearly 12 weeks and still no movement, expectant management isn't likely to be a major success for me. So the MVA is actually a blessing! How are you getting on now? Were you happy with your care at the Gwent?

Glad you had a good experience in awful circumstances @PurplePansy05, it makes a world of difference.

That's great news about the aspirin and cyclogest. I'm going to take the Tommy's research to the GP, if and when I get pregnant again (my rmc is still closed).

I'm not quite ready to think about what's next, dh keeps me grounded by saying we've not exhausted this path yet, we can try ivf etc. Good to hear that you're feeling a bit more positive.

@footprintsintheslow I've got that book, agreed it is really helpful and explains things very clearly. I know we've been on another thread together, hope you're OK :)

@VenusStarr I am nowhere near ready to give up yet. I think I will only seriously consider adoption if I exhaust all other routes, trying naturally, with some support if needed (meds) and IVF. I'm not sure how IVF might help with recurrent miscarriage, is it the case the embryo would be checked first before implantation to ensure there are no chromosomal issues? So that might be of assistance if the nature of miscarriages was chromosomal? I'd be interested to know what advice you've had re IVF as this is a route we'd go down as well, if it can help Xx

I had a free consultation at a private clinic at the end of February, just part of an open evening and had a 15 minute session with a consultant. He said that ivf could help us as they'd get a good look at the eggs and sperm and also see how they come together - sounds like there's a lot they could learn which might give an insight. Not sure it'd pick up chromosomal issues though.
I think you can have 'pgs' testing which looks at whether the embryos are abnormal. But it's costly and I think it's a bit controversial as they sometimes discard healthy embryos and sometimes they can look abnormal but then correct themselves?
The clinic we're assigned to is an NHS hospital (we get one free round) and it's not open yet sadly. Xx

I wonder why the fertility clinic was not mentioned to me by the NHS at all, just the RMC referral. I'm a bit confused about that. Should I be asking anyone about this?

I didn't realise there is a risk they can "discard" (it's an awful word, but not sure how else to say it) healthy fertilised eggs by mistake as part of PGS, that's not good.

My friend who had IVF privately (successfully, at 40) said they pick the best quality egg and check quality of the sperm too. I'm not sure if in my case that would make any difference though, DH and I had the initial tests in a private clinic too and both, sperm and eggs were fine. In fact, very good, and the consultant even said I had plenty of them when she scanned me.

For now, I'm clinging on to it thinking that maybe one of these eggs will be the lucky one and baby aspirine + Cyclogest will help me. Xx

Hi
I know it’s a old post but was wondering if u have had any luck with rmc in Cardiff??

I’m going through my 4th mmc ( I managed to have one baby and now my 2nd mmc after having my daughter)

Im 36yo so age is not my side …

Was wondering if they support now women in Wales and what they did for you ?