Recurrent Miscarriage Advice

[itsme761]

Hi All

Looking for some advice, particularly in these weird times. Brief history of me, late 30s with unexplained infertility. We've never conceived naturally but no-one can figure out why, all our tests have come back fine. Slight hypothryoidism. We underwent IVF back in 2016 and out of the first cycle successfully had my daughter with a smooth pregnancy and she is now 3. We've been trying for our 2nd for over 18 months now with IVF for over a year, 2 successful transfers but also two miscarriages (1 at 9 weeks, the last one at 7 weeks) and a failed transfer. All the embryos are genetically tested (they recommended it because I was 37 at the time of collection), doing IVF I have taken aspirin and progesterone (and oestrogen) for all my pregnancies.

Long story short, the clinic won't do any more transfers until we investigate further as to what may be causing my miscarriages (we've got 3 embryos left). I've tried getting referred to Sian Quenby in Coventry both via my GP and self-referring but so far I've heard nothing. I'm going slightly insane, if I had dates to work to that would be fine, but hearing nothing is killing me. I turn 39 next week and feel like things are going to just get harder the older I get with all this waiting.

Does anyone know if the clinics are open yet and how to get a response? Has anyone had an appointment post covid lockdown? I just feel so helpless in moving this along, the fertility clinics are rubbish at dealing with miscarriages and I feel like I need an expert to look at it all holistically.

Hi @itsme761 so sorry to hear what you are going through!

I live in Coventry and was referred to the miscarriage clinic back in July due to recurrent miscarriages. I hadn’t heard anything from them so called a few weeks ago. I received a call back to say that they had received my referral but due to covid everything is on hold and I wouldn’t hear until at least mid September 😢

I hope you hear something soon and get the answers you are looking for! If I hear anything further I will post an update on here for you x

Thanks so much @Siobhano88 that's really useful to know, albeit so frustrating!! Stupid Covid!! We had to wait months to do our last transfer because of it and now this.

Really sorry to hear about your miscarriages too, wish I just had a magic wand and could magically get pregnant and it be ok... just realised that's what most people are able to do....!! xx

Hi @itsme761 sorry to hear about your losses. Are you based in the Midlands? The IVF clinics that specialise in miscarriages in London (ARGC, Lister, Zita West) are all open I believe (certainly ARGC is because I've just done a cycle there). There is also Dr Shehata in Surrey who is a recurrent miscarriages specialist although I have heard mixed things about him and don't know if he is currently operating

Good luck. I really hope you find the help you need to have your second baby

Xxx

Thanks for the info @Janefx40, I contacted all of the clinics you recommended to get their advice, prices etc and had a mixed bag of responses. Turned out I had to have another ERPC though amidst all of that as 6 weeks on I was still getting positive tests and a scan showed I still had 'retained products'. So, after all that we weren't ready to proceed anyway which in a way helped us with the waiting for an appointment.

For anyone else that may be following this , I spoke to Sian Quenby's secretary who advised a 12 week wait with a letter coming out approximately 2 weeks before the appointment. I felt better having a timescale to work to.

I've just received the letter in the post this morning and we have a telephone appointment scheduled for a week's time, so fingers crossed this may be a step in the right direction to getting a few answers and trying again with our remaining embryos...

@itsme761 so pleased to hear you have your telephone appointment. I had my telephone appointment on the 18th September with professor Siobhan Quenby and she was literally Amazing!! She’s so positive and such a lovely person to speak to. She booked me in there and then for my bloods and I’m also taking part in a trial! I have everything crossed for you and hope you get some answers soon xx

Oh wow, that's really positive news @Siobhano88, thanks for letting me know, really really hope I have the same experience. So pleased I managed to hold out for the appointment with her.

Keeping everything crossed for you, the trial sounds really interesting xx

@itsme761 great news about the appointment. So much better to be seen by Dr Quenby if at all possible.

Hope it all goes well for you xxx

Going through similar first pregnancy loss : ( no DC late 30's, so it would be great to hear how everyone has got on @Siobhano88 @itsme761 @Janefx40

Sorry to hear this @LAURAPAX! After my referral to the miscarriage clinic I found out I have a condition called lupus anticoagulant which causes the blood to clot and they believe this was the reason for my miscarriages. I had a baby girl in Feb of this year after 4 miscarries but I had to inject every day from positive test until 6 weeks after birth! Xx

I'm so sorry about your loss @LAURAPAX

I've been round the houses since that loss but I am also in my mid-40s and was already an IVF patient so things were a bit complex.

I see Mr Shehata at CRP clinic in Epsom for immune support. I have made progress but it's very early days and I don't yet know how things are going to work out.

The immune treatment I've done is controversial and not all medics think it is worth doing but we wanted to try everything we could.

Miscarriages are so hard and one thing I do wish is that I'd taken more time to let myself recover emotionally. I think a lot of the decisions I've made since have come from a place of grief for the baby I lost. If you can, take time, speak to someone and let yourself recover before you decide what to do next.

Sending you lots of love xxx

@Coxy88 thanks so much for sharing, that is fantastic news you have your DD now. Can i ask did you get referred on the NHS for testing or go private? I am keen to get cracking as soon as possible as i am really concerned about my age and want to do everything i can to make positive steps forward after my mc.

@Janefx40 thanks for your lovely encouraging words and advice and I really hope things progress well with next stage. To be brutally honest I just feel completely floored by the whole situation, when you make the big decision to start trying for a family it just didnt occur to me it might not happen / there are lots of things that can go wrong. I appreciate i am at the start of my journey but i've found it so horrifically awful and didnt understand the barriers and truly comprehend the things that could go wrong. I think this is because none of my friends or peers seem to have had an issues and I given myself a false sense of security. I just wasn't aware, that or i just didnt take it in. It's been a very sobering and difficult experience.
I totally understand around taking time etc i just feel like time is not on my side (i wish i was in my early 30's!) Anyway we have to stay positive dont we. Thank you again for your insights and experience it is much appreciated. xx

Really sorry to hear about your loss @LAURAPAX ☹️ A lot has happened since my original post, I underwent a trial with Prof Quenby’s team which looked at inflammation of the uterus and they determined I had it and so took a course of antibiotics to see if it had any impact. Had another embryo transfer but despite everything I had another miscarriage, a chemical preg that time so very very early…

We decided to do another egg collection after that before I hit 40 and pleased to report I got pregnant with the first transfer from that collection and have a 5 month old little boy now! It wasn’t smooth sailing and I had another haematoma and went on bed rest for 5 weeks at 7 weeks pregnant and was pumped full of progesterone, but it worked and he made it, full term and healthy. Part of me thinks there was something causing the regular haematomas but we’ll just never know. We had every test going and none showed issues other than the inflammation…

oh, I also read an article about gluten sensitivity and whilst not celiac I decided to go gluten free well before my last transfer and throughout my pregnancy, who knows if that had any impact. I have a dairy intolerance already so I may have been gluten sensitive and just thought it was that 🤷‍♀️ I also cut out sugar for a bit, just trying to get rid of anything that may have caused inflammation..

wishing you so much luck with yr next steps