Recurrent miscarriage clinic

[Figtree11]

Just wondering about others experiences of recurrent miscarriage clinics.
I’ve had 2 MC in a row, and the EPU have said I can be referred to tommys miscarriage clinic in Coventry. My GP has put my referral through and this morning I was sent a link to choose an appointment.

First one available is November. I’m grateful I’m able to book an appt after 2 not 3 MCs. But 6 months seems a long wait. I am going to continue TTC in the meantime, so if I am lucky enough to get pregnant again & something goes wrong, I’ll have this appointment. But I’m so worried that it will just go wrong again as I don’t know what caused the other 2.

Anyone had similar wait times, and did you do anything in the meantime, like private tests etc?

If you get pregnant while waiting, call them. IME they will try to get you on a cancellation (and unfortunately due to the nature of the clinic, cancellations occur regularly). They made a mistake with me as they should have referred me after 2 and didn’t until I had 3. I mentioned it to the receptionist when I called to ask a question and she called me back an hour later having put me into a cancellation the following week. Rainbow baby arrived a year to the day of that first appointment. Good luck x

it was 4 months when I was first referred in 2019, but clinics completely shut down investigations during lockdown and only saw existing pregnancies. It’s created a huge backlog, it was 18 months when they reopened in 2021. It’s hard waiting. I was almost 38 when referred so then having to wait for the 2 months it took to be seen (thankful for receptionist) for initial blood tests, and then another 3 months for the follow up blood test was really hard. However it turned out the issue was with my blood and those tests can’t be carried out when pregnant or recently pregnant so hard as it was, I’m glad I waited.

You could get the APS blood tests in the mean time but last time I checked they were £160 per test (there are 3) and whatever they show up the NHS generally make you repeat the tests anyway. Sometimes they will accept them, sometimes not. If you have a sympathetic GP, and it sounds like you might, they might agree to run these for you while you wait, then it’s in the NHS system. Also if you do get pregnant while waiting ask for progesterone, this is becoming more regularly prescribed to women who have had 2 or more miscarriages, even without bleeding in pregnancy, and results suggest it does help. X

Hi,
It was 6months wait for me after 3MC (although it should have been 2) this year - I still haven't seen them so not sure how fast are they once you get your appointment.
Agree, if you get pregnant ask your EPU for progresterone (is not a guarantee) but it may help keep taking folic acid etc and I wish you all the best.

Thank you for your responses, it’s good to hear of others experiences.

I had some spotting in the last pregnancy which they couldn’t see a reason for so I had progesterone with that. Unfortunately it didn’t help, and the heartbeat stopped about 2 weeks later.

NOVEMBER?! Oh my goodness. Ive gone theough my gp because ive now had 3 mc's this was april, theyve told me they will call me by 7th of june. Which seems so much quicker than november.
I dont have any experience with the clinic of course, but wishing you the best but unfortunately more people are going peivate because the nhs is so behind with their appointments (in everything!!!)
Hopefully you either get some answers or have your rainbow baby! Push your gp for a full blood count. Just ring them and demand a FBC! x

Hi @LER2023 hope you are doing ok? The GP said I’d had ‘just’ 2 MCs so can’t get these tests done through the NHS. It’s only because tommys helps fund the clinic in Coventry that I’ve been able to be referred there. I wonder if that has had any effect on me having to wait till November.

I think I’m going to carry on TTC and if I do manage to get pregnant & then lose it, I’ll already be on the list, instead of having a 6 month wait after a third loss

My wait was around 3 months - I waited so didn't get anything privately, all the tests came back normal, sadly facing my 4th prospective loss currently and gutted I didn't get any answers but I did get warned that around 50% of people get normal test results as it's put down to "idiopathic" recurrent miscarriage (so basically "we don't know why").

Hi @Figtree11 im so sorry for your losses. I had my last one last month. I recently got referred to the Coventry clinic and was lucky enough to get a cancellation appointment so I have my first telephone appt in 2 weeks time. I have spoken with so many women who were able to get cancellation appointments, I spoke to the Coventry clinic on the phone who also (prior to my appointment being booked) said I could call up to ask if there’s any cancellations. I would advise to call up in the morning to ask if they have any cancellations, if not then retry in a few days or so. It seems as though cancellations come up quite regularly so keep trying if you want to be seen before November. I wish you luck xxx

I’m sorry @moosey89 😔

@BLC1234 thanks for sharing. Did you have any sort of letter through confirming your first appt before you rang up about cancellations? All I’ve had so far is the nhs online referral form to fill in & that’s where I selected the first available date which was November. I thought if there were cancellations they’d work down the waiting list instead of people who rang up to ask

@Figtree11 no so I was chasing and on my GPs case daily as I don’t have much faith in them, as soon as my GP said my referral has been sent, I called Coventry hospital to ask if they could see the referral their end, which they could, so she booked me in over the phone. She said it’s currently October/ November time.. then I mentioned any cancellations and she said let me check todays and luckily there was one.
so if I were you I would 100% call and said that you’ve been referred and have an appointment booked for November, but wanted to check if there were any cancellation appointments so that you could be seen quicker?’ Alternatively if you can book your own appointments through choose and book.. you should be able to see cancellation appointments on there if any? (I just didnt get that far as to booking my own). I was told some days there’s cancellations others there isn’t, so may have to keep checking every few days, let me know how you get on! xx

I’m so sorry. One day we will know the reasons for more of these ‘idiopathic’ miscarriages. My own condition would have been classed as unknown just 35 years ago. I hope medical knowledge moves fast for you x

Thanks @BLC1234 im away with work this week but will definitely look at giving them a call in the next couple of weeks. I’ll take another look online too to see if anything comes up.
Thanks for the advice 😊