Experiences of recurrent miscarriage clinic

[LisaSimpsonsbff]

It's been confirmed today that I'm having a third miscarriage at a bit over six weeks. I've already had two previous miscarriages in the last few months, both at five weeks. The GP said they'd send me to a specialist at RMC if this one failed too, and so I was just wondering if anyone would mind sharing their experiences of this? How long did you have to wait? How long did it take to get the results? Were you told not to TTC while waiting? What types of test did they run?

Just thought I'd boost this just in case, as I'm going to ask for the referral tomorrow and have found it really hard to find any information about what to expect.

So sorry for your losses. I had three miscarriages last year also and it was an awful time. Hope you're being kind to yourself. Where I live we don't have a RMC as such, just a referral to a consultant, although I assume it will be much the same. I didn't actually have to see the consultant for a few months as a gynaecology nurse started off all my bloodwork before then and unfortunately it does all take some time. I'll explain all the tests and timings as best I can.

These are all the tests you might get - karotyping (I believe now only done if there have been genetic tests during previous miscarriages that indicate genetic factors), all the blood clotting tests, and a scan of the womb and ovaries. The Miscarriage Association has a really useful leaflet on these - www.miscarriageassociation.org.uk/information/miscarriage/tests-treatments/

They'll probably start off with blood tests first as blood clotting is one of the most common treatable causes of miscarriage. I was asked to wait 6-8 weeks from my last miscarriage before having my first blood test as this can affect results. If these are positive they are repeated in another 6-8 weeks, so it does all take some time unfortunately. My bloods came back in about 3 weeks the first time and 1 the second. Then I had a consultant appointment to confirm my diagnosis and come up with a treatment plan for future pregnancies.

I didn't ttc during this time as my last pregnancy was confirmed as having no genetic issues so I felt it was likely to be something to do me rather than 'bad luck'.

I hope this is helpful to you and good luck with your referral and future pregnancies.

I've had three miscarriages in last seven months and have recently gone through rcm testing. All of my mcs ended between 5-7 weeks.

First off, if your GP is supportive then ask him or her to do blood tests. Mine ticked the box for testing everything she could and it gave me a baseline set of results to take to the consultant. From the first appointment he was therefore able to rule out a lot of the more obvious things.

I was advised to not get pregnant whilst undergoing tests, as it obviously complicates things. The whole testing process only kept me out for two cycles however. Hormone levels are checked, thrombophilia (blood clotting) and thyroid too, and a transvaginal ultrasound done to check out structure of uterus. I also had an MRI because the TVUS was unclear.

Here's what I found: I have mild PCOS (no problems conceiving - I conceive every cycle I try); I have a mild clotting problem; I have focal adenomyosis. Here's the rubbish part, though...it is unclear whether there is a link between my specific problems and rcm, because no testing has been done. There might be. But then again, maybe not. And if there is, with the exception of the clotting problem, there's nothing that can be done to try to prevent mc. Progesterone isn't prescribed in UK as it's proven ineffective - that was one I read about commonly.

Also, the NHS (and indeed BUPA) no longer offer karyotyping (genetic testing) as the possibility of discovering anything is so low. Genetic testing is only carried out on any products of mc that can be retained.

I'm currently 6 weeks pregnant again, and I'm on heparin injections for the clotting problem. However, I started spotting yesterday so I've no idea if things will progress this time either.

It's worthwhile doing the rcm testing of course, but be prepared for them not finding anything, or not being able to suggest anything if they do. It seems to be an area of medicine that still has a lot of unanswered questions.

There are further private tests that can be done (NK cells) and IVF is of course an option. But I cling on to the success stories I've read about of women who have got their happy endings naturally - but I'm prepared for what it might take to get there.

Hooe this helped.

Thank you so both so much - that was really helpful. Wishing you both the very best, and Susie I really hope this one is the one for you.

Anyone who comes to the end of the NHS tests with no explanation for the recurrent MCs, I urge you to contact Profs Quenby and Brosens in Coventry. They have a self-referral research clinic for recurrent MC at the university there. You pay about £400 in total for tests and consultation. They are absolutely lovely and will do everything in their power for you. I now have a baby after five unexplained MCs.

Thanks - I went to see the GP and she's referring me, although she was a bit odd (maybe even sceptical?) about the fact that I've had three losses in four months - I've twice got pregnant again (and lost again) immediately after, without having a period in between. Now feeling a bit panicky that this is my fault - but other GP from the same surgery said there was no need to wait unless we wanted to!

Thank you, and good luck to you too. It's a horrible, all consuming, incredibly lonely time and I'm sorry anyone has to go through it. Take care of yourself and your relationship, too. Xx

I got pregnant immediately after first mc with no period in between. And between mc 2 and 3 there was only 1 period. Now with pregnancy 4, there was only 1 period after mc 3. So 4 pregnancies in 7 months.

My consultant said there's nothing to stop you trying again after a mc - he said if your body is ready to be pregnant, it'll ovulate and allow you to get pregnant.

However, mentally it takes its toll. I wish I'd taken a step back a few months ago and maybe left the rcm testing for a bit. However, hindsight is a wonderful thing - I'd never have accepted that wisdom after mc 3 as I was adamant I wanted to do everything straight away. I thought I was fine with the mcs, pragmatic in the extreme - but being pregnant a fourth time now, with all the uncertainty and anxiety, is not cool.

Do you have a holiday planned? Time out and away from things is a good plan xx

Yes, DH's main coping method seems to have been planning possible holidays for us! We were intending to wait for my period after mc2 before trying again, but I managed to fall pregnant even though we didn't have sex within my 'fertile' period - it was a real (and not entirely welcome) shock as we'd been trying for seven months before the first MC so I never imagined I could fall when not trying. But then this one lasted a little longer, and so I thought maybe it would be a happy ending... In a way I'm relieved that the advice is to not try while waiting for testing as I think I desperately need a break - this has been non-stop since February, and I just feel dazed by it all now.

I have so much sympathy for you - I completely freaked out over pregnancy three and the two and a half weeks from finding out I was pregnant to the scan confirming it wasn't viable were probably the worst of my life (I should acknowledge here that I've been pretty lucky in other ways!). In a horrible way, it's actually been better since I knew it was gone. I thought about nothing else and became completely obsessed with analysing my own body - do my breasts hurt? How about if I squeeze them really hard? Do I feel a bit nauseous or is that because I cried for an hour and have made myself feel ill? I think I spent £100 on pregnancy tests. It's a horrible, lonely thing.

This pregnancy was unplanned, and also not possible, or so I thought...I had become such a ttc "expert", I believed, which just goes to show you never really know what's going on with your body.

Part of me thinks there is a link between mc'ing early so close together. Certainly I became so pregnancy / mc obsessed that, ironically, my lifestyle worsened - I wasn't exercising as much and my diet wasn't as healthy. It is like you can't see the woods for the trees after a while.

Concentrate on physical and mental health first. I said to my friend that I wanted to wait until I had stopped feeling like my body was a separate entity I was in conflict with, if you can relate to that.

Btw - you were doing well if you only spent £100! 😂

One of the things the Coventry clinic is researching is hyper fertility, where you get pregnant very easily but then miscarry. This turned out ro be the case with me, and they gave me medication to make my body choosier about which foetuses it would let implant. I am not an expert but having had your MCs so close together, you might want to consider it as a possibility.

That's interesting @ifigoup. I've read about it. How was this identified? And what was treatment? Did it take you longer to conceive when on treatment?

I have become pregnant every cycle I've wanted to. I thought I was lucky, but I think there must be something to hyperfertility.

That's really interesting, ifi. I don't know whether I could be hyperfertile or not - the fact it took me seven months the first time suggests not, but I have wondered whether maybe DH was 'the problem' at first, as I fell pregnant a couple of months after he started taking a medicine cabinet of supplements! It certainly does feel strange that just as I was beginning to wonder if there was a problem as it was taking a while (I know that seven months is early for that) I suddenly seem to not be able to stop getting pregnant and miscarrying. I told my DH that it feels a bit like one of those stories with a malevolent genie who gives you ironic wishes - I wished to get pregnant but turns out I should have wished for a baby.

I can't help but wonder whether there's a link too, susie - but apparently there's no evidence of this. In some ways I've been healthier (stopped drinking), but in others less so. Once I'm feeling a bit better (still bleeding at the moment) I want to get into a regular exercise routine.

I absolutely do know what you mean about the separate entity. One of the things I've found upsetting about all this is the feeling of not being able to trust my body. I've been very lucky and never had any serious health issues, and I hadn't realised how much I took it for granted that my body always 'plays ball' with what I want it to do.

@Susiebabs, it was diagnosed based on my history and the timings of my MCs. The next cycle I had to take progesterone from 7 DPO, then test at what would have been CD1 and stop taking it if not pg (as it delays you coming on). The first cycle, I didn't conceive. The next cycle, I did, so kept taking progesterone until 12 weeks and also had to inject heparin from BFP day until 12 weeks.

By 12 weeks I really didn't want to come off the medication, as it felt like maybe that was all that was keeping me pg. But it was reassuring to have had several early scans by then (the 12-week scan was my third), and they kept monitoring me very closely. I went on to have a totally uneventful pregnancy.

They also thought based on the timings of my MCs I might have had problems with the placentas (though this was just conjecture). The progesterone also supports the development of the placenta.

That's really interesting about progesterone. My consultant told me that NHS does not support its usage as it has been proven in tests to have no impact on rcm. I'd try anything that wasn't harmful! I'm on heparin too because I have a blood clotting mutation - it's quite an unpleasant daily task, isn't it. Thanks for sharing that information!

I know they do give progesterone more routinely elsewhere in Europe to support early pregnancy.

I guess if they've no evidence to support it one way or another then they'll cut costs where they can - it's one for me to bear in mind for privately in the future, though. I've read a lot of stories of women who swear by it.

I get my second set of hcg results back today. It's my best indication of how things are going before early scan next week. I'm really hoping for a positive outcome this time.

Thinking of you Susie - hoping you get reassuring results from the blood tests.

Tests results not back from the lab, so another day of waiting. 🙈

Oh that's rubbish. Was it done at your GP or at the hospital? I was actually surprised by how quick they got me the results of my hcg tests with this miscarriage, but I guess it was all very 'in house'

GP - first set came back in 24 hours so I thought second set would be the same, but apparently not. I'm really lucky, my GP has been awesome throughout everything.

Hope you get good news today.

Feeling pretty awful today - for some reason I just tortured myself by reading the 'how did you tell your partner you were pregnant?' thread on the pregnancy topic and had a bit of a cry about the fact that I'll never get to be just happy at a positive test ever again.