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?

I'm sorry you feel that way. It's so horrible isn't it. It robs something from you as a couple too. I'm always preparing my OH for the worst, telling him it's not going to last, detailing all of the things going wrong...because it feels better to be fatalistic about it than happy.

But this is just our journey. And from what I've come to realise, very few people have a straightforward path to parenthood - it's just that nobody talks about it. Everyone has that pal who tells you she got pregnant the first month trying, or that pal who's at the other end and has been trying for years, but have you ever noticed that nobody says 'Yeah it took me nine months of trying to get pregnant, then I had a miscarriage, then it was six months later I got pregnant again'. Loads of people are disappointed and anxious in different ways - it's just that we don't talk about fertility more openly, in the real world.

Be sad. Give yourself a few months off. Try again when you are stronger and can handle that it might not work again. And when you've got your life back to a place that you think about things other than being pregnant. I think that's the only thing for it.

I too have a Coventry baby after 5 miscarriages so recommend them as well

@LisaSimpsonsbff
I had rmc tests at my local hospital, they didn't find anything and wrote me a letter that made me insane which said that there was no reason that a future pregnancy wouldn't be successful.
I am actually horrified by that. I just couldn't believe that everything we had been through had been brushed under the carpet like that!!!
Anyway I just wanted to say that we took a break since last mc for around 3 months, to have the rmc tests but to also give both of us a chance to physically and emotionally deal with it. I took all manner of pills, I read a book called it starts with the egg and found it very useful. I am the type of person who responds well to having a plan. I also did the joe wicks diet for 2.5 months (very low sugar, high protein) and stopped drinking. I was determined that in my next pregnancy I wasn't going to have the niggling voice in my head asking if I had done everything I could to protect my pregnancy!
I am currently just over 12 weeks pregnant. I have self subscribed low dose aspirin since my bfp. I have been in the prism trial (progesterone or placebo) since 7 weeks for bleeding. I am now on the aspirin officially (prescribed) and it turns out that I have a heartshaped/ bicornuate uterus and that some of the issues with previous pregnancies could have been implantation location. So anyway what I am trying to say is trust yourself, push for what you need to, we all know the system is stressed at the moment, but you have as much right as the next person to the best possible treatment.
I also had counselling. I have found it incredibly helpful and I think if you feel you can/ need to talk to someone it is very good.
All the best to you.

Sorry to revive this thread, but was hoping for some further advice. The confirmation of my appointment just came through and it's in the obstetrics department?! A) this is going to be bloody horrible, isn't it? Me and a load of pregnant women? I'm going to have to go on my own as waiting for a slot that my husband could do too would have delayed it by a month. B) is this even appropriate? Bit worried that they're fobbing me off with somebody who night not know much about recurrent miscarriage... Am I overreacting? Is this normal?

Hi Lisa,

Sorry for the worry you're going through at the moment.

I think things probably vary depending on where you live. I have to admit, making you go to the obstetrics department does seem pretty insensitive. When I've been to RMC it has been an appointment in a general gynaecology clinic with a consultant who has an interest in recurrent miscarriage. (Although I'm not convinced my consultant is actually that interested in it!) I think unless you live near one of the big centres (i.e. St Mary's, Coventry) you're unlikely to have an appointment in a dedicated RMC clinic or see a Consultant who works purely in this area because at the end of the day, we're in the minority and there aren't so many of us unlucky ones.

I think it would be ok to go without your husband but you may wish to take someone else with you for support. The tests looking for a cause will be focussing on you and my DH hasn't had to have any tests. Was your last pregnancy sent away for genetic testing? If so they will probably give you the results of this.

It might be good to write a list of everything you want to ask with your DH before you go so that you're not worrying about forgetting things.

I hope that helps a little.

The consultants who deal with recurrent miscarriage are usually obstetricians/gynaecologists so that's normal. However, when I went for my appointment it was only me in the waiting room, as it was a specific appointment rather than a clinic for pregnant women.
Hope it all goes well and you get some answers.

Thank you both. I was expecting it not to be a dedicated recurrent miscarriage centre, but I thought it would be gynaecology (they seem to be different parts of the hospital) and I did also think, obviously over-optimistically, that there would be someone who specialised in recurrent miscarriage. I've googled the consultant I'm seeing and her specialisms are:

Urinary urgency and stress incontinence;
Key hole surgery
Prolapse surgery
Abdominal and vaginal hysterectomy;
Endometrial ablation with radiofrequency technique.
Menstrual problems,
Pelvic pain
Polycystic ovary disease
Menopausal problems, HRT

PCOS seems like the only vaguely relevant one, and I'm reasonably certain I don't have that...

Experiences seem to vary so much between areas. Mine is probably quite different as I'm very rural. Totally understand your anxiety about being surrounded by pregnant women - several of my appointments have tied in with busy scan times in the antenatal clinic and I've been surrounded by happy people going for their 12 week scans etc...and even taking selfies! But for my actual recurrent miscarriage appointment it was only me in the place.

I would go along to the first appointment and see how it goes and if they follow the guidelines for recurrent miscarriage testing. You can ask your GP to refer you to a specific specialist. I've done this as I want an obstetrician for future pregnancies that specialises in my condition. I actually phoned the new consultant's secretary to check if I could and she said it happens all the time and wasn't a problem. So that could be an option if you're not happy with the outcome of the appointment.

Hope it goes well for you - I found they were very thorough at mine.

Marking place to come back later. I've been looking for a post like this as this is what's happening to me too. I'll post later as I'm rushing to work.

Thinking of you - it's horrible isn't it

Lisa, although it isn't listed by your consultant as something they specifically do they will have learnt about recurrent miscarriage as part of their training and have knowledge of the tests that are recommended. The initial round of tests are pretty standard and easy enough to do. I think the miscarriage association website has information on this. Would it be worth having a look over this so you know what to expect and can double check that everything is being covered?

And if you're not satisfied with things after you've been to your appointment then don't forget you can ask for a second opinion and this doesn't have to be in your local hospital. From what I've read on other forums I think St Mary's will see anyone if you're prepared to travel to London and you can self refer to Prof Quenby in Coventry for natural killer cell testing if that's something you'd like to look into. There's a fee to see her of a few hundred pounds I think.

Thank you for the advice, both puddleduck and keepon. Feeling a bit calmer about it today, think I just freaked out a bit when I got the letter yesterday. As you say, I'm sure they'll still know what to do and tbh my expectations of getting answers out of this are quite low anyway.

It is really difficult all the not knowing. I hope you get some answers and support.

Hi, I was sent to Liverpool for testing and management after 5 miscarriages. I always had blighted ovum type miscarriage.

They did lots of blood tests, all came back normal. They did sperm tests on dh, again normal.

When I became pregnant again they started me on hormone injections, high level folic acid and of course aspirin.
None of this prevented miscarriage number 6, in fact it made the miscarriage last longer and be more painful.

They then discharged me saying that they couldn't help, that they do not know the cause of over 70% of all miscarriages.

Advice was that it's likely to happen again and again but it was up to us if we wanted to continue trying.

So, I became pregnant, had miscarriage number 7.
It was awful, I needed gas and air, I needed morphine for the Labour pains in hospital.
I was 42. I visited my GP and asked for the pill. I was still bleeding, the tail end of the miscarriage.
GP advised that one the first day of my next period I should start the pill.
We had had enough, gave up all hope.

My period didn't arrive, I felt very unwell. Presumed I had retained miscarriage products. Had a scan to check. There was a 7 week baby, heart beating away for all to see. He starts school in September.

Hi OP sorry for the delay in coming back. I'm going through what I think is going to be a mc at 7 weeks. It'll be my 3rd in 5 months so I've just contacted my GP to start the referral process.

I have heard mixed things about the testing on NHS. It's obviously useful for certain disgnoses but most people I know have gone on to get further tests at another clinic privately.

I had a mmc in April then another mc straight away about 3 weeks later. Got pregnant the next cycle and was having lots of symptoms so started to hope it might be ok until I started spotting on Monday.

I'm also taking part in the prism progesterone trial. They think progesterone may have a positive affect on mc risk when placenta takes over but in some cases it's been thought to prolong a mc which obviously is devastating. I've been told aspirin isn't effective and in fact is recommended against by some specialists as it can cause problems.

I'm in no mans land too and sending sympathy. I'm going back for scan next week to see if my empty gestational sacs (I have 2) have magically grown babies. There are yolk sacs but no babies currently.

Let us know how you get on with your results. Good luck and hand holding

Hi choo - so sorry to hear what you have been through, and what you are going through now. I hope you get better news than you're expecting next week. By the way, I went to go see the GP when my third one was clearly failing and they wouldn't refer me until EPU confirmed the miscarriage, which was a bit frustrating. I was then pleasantly surprised by how quickly the appointment came through (it'll be four weeks to the day after the GP referred me), but I know that varies a lot from area to area. We were considering going private if the appointment was going to not take place for several months, and we know we might still feel like we have to do that after the NHS testing. It seemed sensible to me to let them run their tests and then pay for extra ones if necessary rather than going private from the off - but again, that decision was made knowing our appointment would be quite soon (though who knows when they'll actually run tests/get results, of course).

That's what we are planning to do too I think - do nhs tests and see how long they take and how thorough they are then go private. My gp said they will refer me now so hopefully I can get on the list and get the process Started.

I'm properly bleeding now so I do think this is a mc

I'm so sorry, choo. I know how awful that moment is. When is your scan booked for? I hope you get a definite answer soon. I hadn't realised with my last one how much hope I had been holding onto, no matter what I told myself that I was prepared for the worst, until I passed it and knew for definite that it was all over. That limbo period is so horrible. I hope you're able to be kind to yourself and take care of yourself

Thank you so much. Did you get your results today? Crossing fingers you get answers.

My scan is Wednesday so I guess I just hold on tight til then

Will be thinking of you until then - I hope the time goes at fast as possible.

Sorry, I think I was confusing in my posts above - my consultant appointment isn't until Tuesday and that's just a first appointment (I'm not even sure whether they'll do tests or just say what needs doing), so a long way from results! I will let you know how it goes on Tuesday, though - one of the things I've found scary (and why I started this thread - which has helped) is that I found lots of recurrent miscarriage stories online (sadly) but very few that gave me much idea of what to expect from the hospital now, so I think it's good to see other people's experiences, good and bad.

Oh sorry that's my fault for not reading thoroughly

Am so bizarrely worked up about what I know will be a brief appointment where at most they schedule me in for some future tests. Couldn't sleep last night until 3am, so sat up googling nonsense and convincing myself that it's all my own fault for not waiting long enough between the miscarriages... Great idea, me!

Just thought I'd update, as promised. Appointment was fine - doctor (I saw a registrar, not the consultant named on the letter) was nice and friendly, seemed to take me seriously. They're going to do what seems to be an awful lot of blood tests and an ultrasound. The one real blow was that she said it would be October before all the tests are back and we have a follow-up meeting, and that I have to prevent pregnancy until then. I'm desperate to be pregnant again, both emotionally and for practical reasons (I'm on a fixed-term contract and it will all be quite difficult if I get pregnant after December for various boring reasons) so that was not what I wanted to hear, but I suppose I just have to accept it and get on with it.

I would say that the appointment would have been quite difficult to navigate if I hadn't done a lot of reading about all this beforehand. She explained 'day two bloods' really badly, for instance, so I think if I didn't already know what they are I'd have been quite confused about when to go for that blood test. She was also adamant that there is no such thing as a male factor cause of recurrent miscarriage, which I don't think is true.

Hi OP I'm glad you've had your appointment but it's frustrating that you've been told the wait will be so long. I didn't think you had to wait that long for results?

There is a recurrent miscarriage group on the ttc pages here with lovely people if you want some support.

I had my GP appointment yesterday and I've been referred to Dr Shehata at the Epsom centre. He specialised in recurrent miscarriage and I know of quite a few people who have got pregnant following his plan. I haven't been told how long the testing takes.

How are you feeling?

I'm still bleeding and have scan tomorrow to see what's happening - I just hope I don't need management this time :(

She said that one quite important set of tests (the clotting ones) can't be done until 12 weeks after the last miscarriage, which will be early September for me (and then it'll take a month to get another consultant's appointment). However, I have seen other people have this done much more quickly, so I think opinions must vary on this.

Thinking of you today Choo - hope the scan gives you the best news possible under the circumstances