Anyone gone private for recurrent miscarriages?

[Pinkieblue24]

Has anyone on here gone private to find out their reasons for recurrent miscarriages? Was it worth it? Did you get answers? How long was the process? Is it worth the money? If you got pregnant, did they monitor you quickly? What support/treatment plan did they give you? Who did you go to? Who would you recommend?

Any experiences/recommendations would be greatly appreciated! Thank you 🩷

I went to the recurrent miscarriage clinic at St Mary's (NHS), (saw Prof Regan). Once I was pregnant I went private for the whole pregnancy under one of the consultants there (Mr Rai) and had very intensive monitoring. Gave birth in the Lindo Wing (private wing at St Marys). Elective caesarean. Excellent all round.

When I had ivf five years ago Professor Quenby was the UK expert. I think she is still at the Coventry hospital linked in the Tommy’s list of leading recurrent miscarriage clinics: https://www.tommys.org/research/research-centres/tommys-national-centre-miscarriage-research-clinics

Good luck OP. I can also recommend the Fertility Life Raft run by Alice Rose for support. You can look her up online.

For me it has been invaluable. The consultant I saw privately is head of the department for the NHS Trust too so he has really advocated for me to be treated on the right pathways within the NHS too which I just wouldn't have known how to navigate myself.

Originally saw him for recurrent miscarriage blood tests and consultation (paid for by my work Bupa so worth checking this if you have work medical insurance). They showed I may have an immune system issue.

Fell pregnant 6 months later and he had me straight on prednisolone and cyclogest. 6 week scan showed blood in uterus so he increased cyclogest and I had weekly scans until it was under control. Unfortunately baby's heartbeat stopped a few weeks later but he then pushed me into the NHS process to get genetic testing. I could hear him on the phone saying "no, she needs scanning tomorrow. No, tomorrow. And then the tissue needs sending off for testing" and I was thinking "if this was me on the phone I'd be getting fobbed off here and wouldn't know what to do". We found out that baby had a chromosome issue.

I'm now 9 weeks pregnant again and seeing him both privately and under the NHS recurrent miscarriage clinic. He's been massively useful even with things like "the NHS have moved your appointment to a Monday, that's no good - that's a standard gynaecology appointment not a recurrent miscarriage appointment which is on a Wednesday. Phone these numbers, say this, you need fitting in this Wednesday".

I have no idea how you navigate the NHS system without this support!

Obviously I have no idea how my current pregnancy will unfold but I do feel really supported. (Much more so than my very first miscarriage when I was haemorrhaging in my bathroom using Google to find out if it was normal!)

@theDudesmummy thank you for sharing your experience! Happy it all worked out for you & you had a great experience. Would you say there is a big difference when it comes to Private healthcare over NHS. Ive had not so great experienced through the NHS although I have had 2 MC’s and at this point I just want to get extensive testing as I want to get pregnant again however can not bare the thought of another MC

@LaundryIsNotmyFriend I have heard of Professor Quenby and quite a few posts I have read online people have spoke very highly of her and her work! An acting GP at my local practise refused to refer me to recurrent miscarriage clinic as she said they only accept referrals when its 3. Kind of feel stuck atm hence why I am thinking of just spending the money and going private. Thank you for your recommendation- I will definitely have a look into them🩷

@twoforwardoneback firstly, I am sorry for your losses🩷 thank you for sharing your story & so happy it is all working out for you- Congratulations on your pregnancy🩷 sounds like you have excellent support & a trusting medical professional advocating for you every step of the way through your journey which is something we all hope for! This is something I am hoping for too. I am just terrified to get pregnant again & be left to deal with alone and not gain some answers or have some support, almost feel like my recurrent miscarriages have knocked my confidence and self esteem. I am really considering going private to get extensive testing so I can gain some answers and maybe have a contingency plan if I was to get pg again but hearing positive experiences gives me hope that some day that can be me too! I really hope it all works out for you🩷

@Pinkieblue24 Just a word of caution - you might have all the tests, and they show nothing which means nothing can be specifically done. I just want you to feel prepared - I'm within the NHS recurrent miscarriage care pathway and I cannot fault it, and all the professionals I've seen have been amazing, but I wasn't quite prepared for how I'd feel about all my bloods etc being normal. It feels like I'd rather have something wrong that can be fixed if that makes sense!

I completely understand your fear of another loss - for me, whilst I had NHS recurrent miscarriage testing, if I get pregnant again I'd speak to a private consultant as soon as I got a BFP (unless the genetic blood tests me and my partner are having done on the NHS mean we have to go down the genetic counselling route, which would be a whole different journey!). This is mainly because my NHS trust only prescribes progesterone from after a scan, and I'd rather have it from day 1 x

@moosey89 This is something I have really been trying to prepare for- like we may never know why & never get any answers. Mentally I am trying to prepare for this as well. I think it will give me peace of mind that I have done everything in my control & if we dont get any answers then we just gotta keep moving and see what happens 3rd time round. Honestly I am just terrified to be pregnant but at the same time I want it so bad, like surely I can’t be unlucky 3 timess?? Its great to hear your experience with the NHS has been a positive one. Have they said why they they would only prescribe progesterone from after a first scan and not sooner? I mean for myself I dont get past 6-7 weeks hburself?

@Pinkieblue24 I was so desperate for it to be a thyroid issue, or clotting issue etc for me that is a relatively simple fix! I felt the same way about wanting to do all I can (and I still do!). I think the progesterone thing varies by NHS trust, but mine is because they want to make sure it's not an ectopic before they prescribe. For me, it likely won't make any difference - my losses have been at 11, 10 and 8 weeks and all were missed miscarriages so genetic causes are much more likely and my progesterone bloods have always been ok. But my thinking is that it can't do any harm so why wouldn't I try it!

I have been a patient of Professor Quenby, the Tommy's unit don't accept referrals unless it's 3 recurrent, but I had MC, MC, DC1, DC2, MC, MC and they took my referral when trying for DC3. She's an incredible font of knowledge and a human touch in a world of clinical terminology. DC3 was delivered by her

The biggest comfort I had from the experience was the testing of the foetus I lost while under the clinic, which showed the baby would've been incompatible with life. So, the miscarriage was the 'right' reaction for my body to take, and it's comforted me ever since

@ExhaustedGoose I just got a call today that the testing from my third loss showed it was caused by trisomy 15. It feels like a weight has been taken off x

I'm due to go to a private recurrent miscarriage clinic on the 24th. I'll come back with an update once I've had the appointment.

Hi,
I went private after my 3MC as I couldn't wait for my NHS referral (I'm still waiting for the appointment and for the genetic testing and is been 6months...).
I agree with @moosey89 there is a chance they don't find anything and that is a hard blow to take - on one side you're happy there is nothing wrong but on the other...you feel horrible just putting it down to bad luck.
Keep that in mind and I wish you all the best.

@JaneSmith8 sorry you're still waiting - it's such a postcode lottery on when you seem to get an appointment! Did you have testing of the pregnancy tissue done and you're waiting on the result?

I saw Dr Rai from St Mary's who also has a practice on Harley Street. He found the reason for my multiple miscarriages and after a simple treatment my rainbow baby was born. Highly recommended.

@moosey89 yes, and is been 6months so I'm starting to wonder if it got lost or that my hospital didn't send it. I tried asking for contacts at my EPU but they were not helpful.

@moosey89 oh thats great news you’ve received some answers! How are u feeling? Sometimes we get to a certain point where we will try anything just to give it a go or make it work and too right we may not receive any answers. With my previous MC’s the first I was nearly 6 weeks when it happened & the second i was meant to be 8 weeks but they saw a heartbeat and baby was measuring 6 weeks & i went again at 10 weeks they said baby had died at 6 weeks. I can never get past the 6 week back so i do kind of want support at the beginning as I can get pregnant but i cant stay pregnant. I agree, sometimes it may be a simple fix or just trying something different which improved everything. I think womens health is very much not taken seriously or funded enough.

@ExhaustedGoose so sorry to hear about your previous losses.🩷 i have heard very good things about Professor Quenby and her medical expertise. I have been trying to find a private Gynaecologist/miscarriage clinic near me but finding it a little difficult.
It’s reassuring when you can get some answers & puts your mind at ease that it wasn’t our fault & there wasnt really much we could do to change it if it is genetics. So happy it all worked out for you! :)

@VolvoFan thats amazing news! If you dont mind me asking, which clinic are you going to & is there someone specific you are seeing? Reason I ask is im struggling to find a private clinic near me- as much as I dont mind travelling to, it would be convenient to find someone close to me first. Hope it all goes well for you & do share your experience💕

It's in Ashford, Kent. I live in Kent, so it's more convenient for me. I'm seeing a gynaecologist who has experience in recurrent miscarriage, so I imagine they'll order more blood tests (I had a couple done at London Women's Clinic) and do some tests on my DH aswell. It was also a month wait, as opposed to 15 weeks on the NHS. So also minimal time wastage.

@Pinkieblue24 I felt relieved - even though I know scientifically I didn't cause my losses, it's evidence that I didn't which means I actually fully believe it if that makes sense. Now just to see if we are carriers of a genetic issue or if it was just bad luck X3!

@JaneSmith8 that's so frustrating for you, I'm sorry. Do you know where it gets sent? Our regional genetic testing hub is Guy's in London. You might be able to call the hospital doing the testing even just to make sure the sample arrived?

@Pinkieblue24 just checking in xx as promised I have an update:

So I had my appointment at the recurrent miscarriage clinic today. I've been given a prescription for:

• 150mg of aspirin a day
• 500mg of folic acid a day
• Cyclogest pessaries thrice a day (I do not miss those!)
• Clexame injections
• Prednisolone

I'm just having some trouble with the GP receptionist because they won't write that out without a follow-up letter from the consultant. I can just pay the £1200 but I can get it for free on the NHS while I'm pregnant. I'm going to get a letter from the consultant to send to the receptionist to get written out and sent to the pharmacy to fill out. In the meantime, I do still have a small amount of Cyclogest left over from a previous IVF cycle, so I can get started on that. I also have lots of low dose aspirin I can double up to 150mg. All in all, quite a stressful day because of the GP receptionist, but otherwise making progress.

If you read Lesley Regan's book "Miscarriage, what every woman needs to know", the last chapter explains that even when no reason is found, the fact that someone has taken an active interest is sometimes all it takes for you to have a successful pregnancy. Strange, I know, but after a loss or two you do lose your confidence. The mind is a strange thing.

@AdultChildQuestion it is indeed a weird and wonderful thing! Although always worth keeping in mind that that won't be the case for everyone unfortunately, no matter how good the care is. I always feel better mentally after any appointments when it feels like someone is helping, and I try to at least hold on to that feeling as much as I can. I've had brilliant help and care from even after my first loss (had 3 now), and I'll forever be thankful for that especially after hearing some horror stories about miscarriage and infertility care.