Recurrent miscarriage referral

[Hayley220]

Hi all, i spoke to my doctor this week and I have been referred as have had 4 early losses in total. I do have a 21 month old son but he was a twin.

What can I expect? Long waiting times etc?

Im not sure whether to go private and if anyone has any recommendations private or nhs for Essex/London area.

Im 36 in April so keen to try asap. But if its something simple like taking a baby aspirin, should I risk trying now and request aspirin from gp asap or wait until I am referred to make sure nothing is wrong. I do fall pregnant quickly so I am unsure what to do. I had an erpc last month for my latest loss.

Thanks xx

Hello. I am currently also awaiting my appointment. It's due in a few weeks. Unsure what to expect. I have started taking baby aspirin from ovulation day this cycle. You can get it from anywhere dirt cheap. It is unlikely to do any harm

Hello. My story is very similar.
Are you able to find out the approximate wait time on the NHS? I went Private for speed. I had an appointment, all the tests and a follow up appointment where I was given a progesterone prescription, all before my initial NHS consultation appointment came through. The NHS wait was 22 weeks.
It didn't even work out that expensive as all the tests were put through the NHS as I had the referral pending. Not in your area though I'm afraid so no recommendation.

@Pineapplewanderer it says on the website 39 weeks from when my GP refers me so this is obvs too long. Looking at private but just dont know where to begin! If i could do as you did with the nhs referral pending would be perfect but I just dont know where would offer this.

@ladybuggoldfinch great. How long was your wait for appointment? I have been told 39 weeks according to when i tried to book online. Far too long for me

Hi OP - I'm really sorry about your losses.

I was referred to the RMC at St Mary's Paddington in early 2018 - I had a son, but two losses before him and two after him at the time of referral. They saw me a couple of times in the outpatient clinic, ran tests and diagnosed a blood-clotting issue and a septate uterus. I went in for surgery as a day patient in August 2018 to have the septum removed. It took a month or two to recover fully and then we conceived DD at Christmas 2018. They saw me lots of times for early scans, put me on clexane for a while and while her pregnancy was complex for other reasons, all was well.

If you can possibly get on their list, I think Professor Regan is amazing. I had total confidence in her and her team. Their clinic is busy (and quite shabby) and sometimes feels a bit crowded but was never chaotic IME. We are so grateful for the care I got there - all NHS funded, we didn't pay a penny.

My GP made the referral in December and my initial appointment was made for the first week in March. It's been moved forward to Feb. I think it's a cancellation that's brought me forward so not too long. If it was going to take 39 weeks I would have gone private.

That's a ridiculous wait isn't it. I just found a local fertility clinic on Google and called them. They had one doctor specialising in recurrent miscarriage so I went with him. I was only after the basic NHS testing but without the wait so didn't feel the need to research too thoroughly. I hadn't been told beforehand that the tests could be put through the NHS.
Nothing was found but at least I know that now and I'm not still waiting in the NHS queue.
I hope you manage to find someone. x

Do you mind me asking what they tested you for?

My gp had me do a blood test last week for thyroid, diabetes, iron, vit d, etc etc. but not for things like blood clotting disorders or auto immune diseases which i guess the fertility clinic would do? @Pineapplewanderer

Ah ok well that's something, my GP wouldn't do any testing so I had all those tests following my private appointment. I also had an ultrasound to look at my uterus etc and then the clotting disorder tests and anti nuclear antibodies.

My gp referred me but when I went back to the early pregnancy unit (the miscarriage just would not end, I needed monitoring every two weeks forever) they told me there was no specialist so my referral would just sit there until they eventually hired someone. I'm 39 so felt I had no choice but to go private. 250£ for initial consultation, specialist recommended progesterone (45£) + blood tests (200£) + a special scan to check for adhesions as I've had a csection, in case it damaged my uterus (270£). And it'll be another £250 for the specialist to look at the test results. So it does add up fast. Some of that like the blood tests and progesterone I might have been able to get for free via my gp but frankly the wait to see a gp is so long and frankly my mental state is such that I'm just paying up. I have savings and want a baby more than I want a fancy holiday.

This said professor regan wrote a book on recurrent miscarriage that really helped clarify things for me, I'd personally recommend reading it before seeing a specialist.

Thankyou! I will have a look at this book. How are things going for you now @Hoping4second

What blood tests did you have done? Thanks xx

I've had a child so we're looking at things that may have changed since then - thyroid stuff, lupus anticoagulants and something called anticardiolipin antibodies.

It's all private so maybe these tests aren't needed and they just found an easy way to get money from me. I don't know enough to tell. But I do know having tests done will reassure me in itself (I'm in a pretty poor place atm, mentally).

@Hoping4second ❤️ it's a really tough ride to go on. I never ever imagined I would have so many miscarriages after such an easy first child. It's heart breaking and frustrating! Every successful pregnancy you see hurts even if you are happy for people. You are not alone chick, big virtual hug at you xxx

Thank you xxx
You too

Hi ladies, i just need somewhere to vent really and a “what would you do” type questions 😬

I have just finished my 2nd period since my erpc. Blood tests which included thyroid, diabetes, vitamin levels etc all came back normal, i just have low iron stores (but not anemic) so have the dreaded iron supplements again which I am used to. I was sure low iron could concrribute to poor egg quality but my doctor says she does not think this is the reason for my miscarriages. If you were me, cosidering all these came back normal but i havent had a test for blood clotting disorders, auto immune diseases or any of the recurrent miscarriage tests.. would you give it another go and try again? Or would you have these tests privately (even though i have a 21 month old).

As a side note i feel this is sad and I wonder if anyone else does this or they just get on and ttc.. i dont want the stress of going through another miscarriage to ruin plans we have in a couple of months time for my sons 2nd birthday. So i am thinking of waiting until april to try, so the plans cant be affected, as i do fall pregnant quickly. But just wondered if its just me who puts it on hold to avoid another miscarriage.. i am 36 in april so its not like I have time for this! 😕. I am so worried i wont have another baby.

What i mean is, would you try this month.. after being told my iron should affect outcomes. I would be 9 weeks when we have a trip away planned and 11-12 weeks on my sons birthday party. Or, if i waited until april to try i dont have any events coming up. Really dont know what to do x

*that was iron shouldnt affect outcomes

I would start trying straight again but that's just me, I am not a patient person, once a decision has been made I jump straight in.

36 really isn't old, people have kids well into their forties nowadays, so don't feel you can't wait. Especially as you've had a child already and the tests came back giving you the all clear.

What does your instinct tell you, both what you want and what you want to avoid? If you do or don't do - which is more likely to cause you regret?

And whatever it is you choose to do - that will be the right answer, don't second guess yourself.

Sending you lots of hugs xxx

Thankyou for replying ♥️ @hoping4second how is your journey going with the tests etc? If you dont mind me asking.

At the moment, i feel like topping up my iron and trying in April. I feel then I have given the supplement a chance to work and I was on that when I concieved my son so in my mind maybe that helped. Its hard when doctors have told me it isnt that, but i have read different things online. Im not suitable for low dose aspirin because of the iron issue. So im not sure what else I could do really, and what tests i could have privately, maybe i will look into that but i feel the only thing is auto immune diseases or chromosome issues with me/hubby they could test for? xx

Chromosome testing is very expensive and the only "cure" is ivf where they test the embryos before they implant them. Both the tests and the ivf are very costly. And the real catch is that it takes ages - hormone treatments to stimulate ovulation, the egg harvesting, maybe several times if they didn't get enough eggs, and then implantations don't always work. Which I can only assume is even more devastating than a "natural" miscarriage because of all the time, money, effort, pain etc etc that you've invested in it. So I've personally given it a pass, especially as we've had a child already so we know we can do it.

I've had a special scan because I've had a csection and thought I might have adhesions that would prevent foetal growth but that's not the case, I have a "beautiful uterus" (most random compliment anyone's ever paid me but I'll take it anyway lol). Did loads of blood tests as well, no idea when the results will be in and tbh not holding my breath.

I think I'm going to try again. I say this with a heavy heart as I'm not sure I can make it through another loss, but the gambler in me wants another roll of the die. I'll be 40 later this year and in my mind, that's when I'll stop trying. So only a few cycles to go until the curtain falls. Maybe that's foolish as the tests could well pick something up.

And anyway that's just me, there's nothing more intensely personal than these types of decisions, fully respect that everyone's mileage varies.

You could try here for NHS

Centre of Reproductive Medicine and Professor Quenby
Gynaecology Department

I contacted them last month and the wait was only about 6 weeks, which was such a surprise! But... I'm not sure if that was for the implantation clinic (I've had 5 failed ivfs) or the miscarriage clinic (as recently had 2 natural ones and a natural one 4 years ago). Prof Quenby was recommended to me on the infertility forum. Yes a bit of a travel, but I believe some appointments are online.

Personally, as I think I'm quite complex I've chosen to go private and see Mr Shehata, he has a miscarriage clinic in epsom and I think one on Harley street.

To reply about private vs nhs. I've been trying for dc2 for over 4 years now. A year of that was wasted with nhs (not for miscarriages) and them not really doing much at all and not having a doctor employed who could do a certain scan etc. Then I saw a private gynaecologist and he wasn't very helpful really. Just over 2 years ago started ivf and no pregnancies from that. On the infertility board someone recommended I have a saline sonogram with a different specialist and a big adhesion (previously misdiagnosed as a midline septum 3 years before) was found and I paid a fortune to have it removed. Have since been pregnant twice (neither stuck though), so big progress. My point is it can all take so so long and I regret many of my fertility decisions (not that I was to know)! Xx I'm nearly 40 now and incredibly sad that if I am a mother again I'll be over 40 (nothing wrong with it if that's what you want, but it's not what I do want).

I don't even know if I have a recurrent miscarriage problem, at my age it could have just been unlucky with the egg quality that month. But I'm running out of time so I am going private.

I should add for prof quenby clinic your gp needs to do a specific referral.

I feel it's a personal decision on what feels right for you. I waited, for a few reasons. The miscarriages had left me feeling run down so I wanted to feel back to normal first. My private Dr said I couldn't have the clotting tests until 3 months after a pregnancy. I also wanted to take some time to feel better mentally and spend some quality time appreciating the little family of 3 we do have.
If we're not successful in having a 2nd I don't want to look back on my daughter's early years thinking I didn't enjoy then as I was too preoccupied in trying to have another.
(I'm 34)

@Pineapplewanderer you are so right. I feel really guilty for thinking about it everyday, when I am so lucky to have the most gorgeous toddler. Im going to wait to try again to feel better health wise as you said.

39 weeks sounds a huge wait! I had 3 mc and think I was given a roughly 6-8 week wait. My appointment at the recurrent miscarriage clinic was early April 2020 so obviously that didn’t happen 🤦🏻‍♀️. I got pregnant in may 2020, half accident as we were still trying to work out what to do! This time I took 150 mg aspirin per day religiously from testing positive and it all worked out she’s now 1! I didn’t ask the gp, just bought it and took it up to 37 weeks. Apparently the gp can prescribe progesterone so that might be worth a go. I was 39 when we started trying (second baby) and 41 when she was born so you do have time. I also got pregnant very quickly each time.