Recurrent MC clinic

[czycoup]

Has anyone been referred to a recurrent miscarriage clinic and if so how long did it take from referral to appointment? I know it depends on each trust but would be good to see others experiences.

I am very sorry for your losses OP.

I have had a very underwhelming experience at a South East London trust. Waiting time wasn’t too bad (couple of months), but I bet it’s longer now with Covid backlogs.

My best advice is to get yourself into a large teaching and research hospital if at all possible. Antenatal care and monitoring at St Thomas’ was excellent. Their attention to detail was fantastic. No stone left unturned, no worry too small to be addressed. I had a stand-out midwife following rmc who transformed our birth experience. I couldn’t be more grateful to her. This care notably showed up our first SE London hospital for everything it was lacking.

I found recurrent miscarriage care to be largely dependent on the individual leading the clinic. At first I thought I was being treated well, and listened to. When I look back, I realise I had a kind and well-meaning doctor. Who actually imposed her views on assisted fertility into my treatment plan - or lack of.

It’s one of the most grossly underfunded parts of medicine, so prepare fo be disappointed. Harsh words, I’m sorry. I wish I’d gone private sooner. My husband wanted to. I put all my faith into the NHS I had been paying into all my life. I was naive.

We had one child, followed by six mc, and now have two other children, both ivf. Private care eventually gave us the space and time to pay attention to my individual case, and ended up confirming what we had thought was the issue all along. Something the NHS just doesn’t have the resources for.

As you probably know, when you go through something like this you end up being a magnet for your friends in similar situations. Most of my friends with rmc have gone on to have healthy babies, without the need for ivf.

I wish you every success in your next steps. And I heartily recommend St Thomas’ in London if you are able to access care there.

Hi,

Such insightful information.
How do you refer yourself to St Thomas in London? Is there a name of a specialist. I will be going private.
Thanks.

It wasn’t long, maybe 4 or 5 months but a total and utter waste of time.
They recommend medications ( hormones, aspirin, high dose folic acid) to “try”, unproven, no evidence based but “give it a go”.
They have no answers & cannot explain over 80% of miscarriages as a pp said, underfunded, lack of interest and so under researched.

Don’t get me wrong, they were lovely, kind, but no help at all and admitted themselves that they had no answers for me as they discharged me from their care.

Not great I’m afraid, I know that’s not what you asked so sorry for the bluntness of my answer.
I wish I had known this when I attended appointment after appointment with so much hope.

I got into St Thomas’ for antenatal care once I was pregnant again. You can self refer for antenatal on their website, even if you are out of area as I was.

When going through rmc I wish I had tried to be seen there. Again, I think I was naive in putting my faith in my local hospital. Tommy’s have probably the most expansive resources on mc online in my experience. We did ivf at the Lister.

Once into antenatal care, my consultant was Prof Shennan. Who was excellent, informative and reassuring. But I truly truly believe that the difference was my midwife. Her name is Laura Bridle and she was the most important person in the whole process. Listened to every word, worry and concern, and crucially, acted on it.

I will also say that our ivf nurse at the Lister was more influential in our care than the consultant. Again, she listened to all our details, took notes, did her own digging and ultimately we have two successful pregnancies to thank her for.

Pregnancy following loss is nothing like the blissful innocent experience which came before, as I’m sure you know.

Good luck @extrahotcoffee. I wish no one had to go through this.

@imaginethemdragons

Agree the wait time wasn't long but it was a waste of time.
I had experienced three missed miscarriages. The very basic tests they did - some blood tests and a ultrasound- gave no answers so they told me to go away and keep trying. In those exact words.

It’s certainly a perilous journey without promise.

After 7 miscarriages and no medical input we naturally conceived as a complete and utter surprise and we had our healthy baby when I was 43!

7th and final miscarriage was under the care of the reoccurring miscarriage clinic. I was taking the prescribed & recommended aspirin, hormones and clexane injections as well as the high dose folic acid.
All of this just made the miscarriage last longer, be far far far more painful and the bleeding obviously more torrential due to the blood thinners.
Desperate, I was willing to do anything.
They discharged us after this.

Then along came out little miracle!
There is hope in the end.

Having a referral (Liverpool Women's) felt like proper progress after multiple mc/ ectopic and fertility issues (we tried a v long time!) but felt it was all a bit of a waste of time really. The staff were really lovely & supportive but realistic about the chance of finding any issues. We had some bloods done but would have had to wait for another mc before any more could be investigated. We were very fortunate that a subsequent ivf cycle was successful.

Sorry for your loss. I had my 3rd miscarriage in the July of that year, and was seen in September. I actually called the clinic to ask what the waiting list was and I was booked into a cancellation for that week. Usual waiting time for that clinic was at the time 8-12 weeks or so.

I was diagnosed with APS that December, was pregnant a month later, and following a pregnancy of blood thinning injections and aspirin, I had my son exactly a year after my first appointment.

You may or may not find a reason. The most reassuring thing for me is that once you are under the recurrent miscarriage clinic, you usually stay under the clinic for all future pregnancies. For many this means scans done in the clinic every 2 weeks in the first trimester, which I found helped my anxiety to a degree.

Thanks for all your responses.

We are torn between trying again soon, or waiting to see if the RMC have any answers. We had our first DC with no issues so I suspect they will find nothing wrong. I do need to lost a bit of weight so maybe getting to a healthy BMI will help with future pregnancies (and they will probably just tell me to do this anyway).

I have other issues, random spotting, cramping (I knew I would have another MC when my back seized up) and long long cycles so maybe it's best to go private so they can look at these things as a whole - unless the RMC also look at those things?

We don't have a lot of money to go private so maybe giving the RMC a chance might, might just give us some answers. I might look up the costs (unless anyone is happy to share what they paid but I appreciate that's a bit of a personal question)

One thing I do want is the regular scans during the first trimester if we do have another. Does anyone know if they will do regular scans if you haven't yet been seen at the RMC?

Thanks to PP (sorry I forget names) I'm going to call the RMC to see if I can get an cancellation when I finally get referred.

Sorry for all the questions, and thanks again for all your input

Regular scans at my local hospital yes but absolutely nothing to do with the RMC.
I self referred and as I was a frequent visitor over the years, they knew me so they scanned me weekly for about 6 weeks, until the usual NHS scanning took over at 12 weeks.
16/17 weeks for an amnio under scan conditions then at 20 weeks.

If you have the head for it, I would probably do both at the same time. Keep trying, and get on the books of the rmc clinic.

A lot of what they do is mopping up after the fact - once you’ve had a certain amount of mc they will test the remains of the baby for genetic issues. They will test you for clotting twice over a two month period. They should scan your womb for any irregularities, bumps, reasons why a fertilised egg isn’t sticking. Possibly offer you a hysterescopy. Possibly do a procedure where they put dye into your Fallopian tubes to see if anything is remiss there (I think it’s called a HCG).

They should discuss options with you regarding progesterone. I believe this really worked for me, but there are dividing opinions. And I feel like you could be at the mercy of whatever the opinion of the doc in charge is.

The reality of finding a cause is unlikely. And imo this is why you should keep trying. Secondary infertility is really confusing, and it’s really hard when no one can give you a straight answer. Be prepared for that.

Regular scans you can do via self referral at the EPU as pp says. And as another poster says, once you are pregnant you remain under the clinic’s care and this is very reassuring. That’s what I experienced at Tommy’s, although most of my rmc care was elsewhere.

In case it helps you to know, I had very regular cycles, and for me it was a question of how late my eggs are released… they often fertilised, but had only a couple of days before my womb lining started shedding for my period. This is where I think the progesterone helped.

When we went for private ivf, when it came to transfer, I was scanned every couple of days. This is when it became apparent that my body was not dropping the egg at the optimum time. Turns out my first DC was a “miracle” lol. A little clingon, which all makes sense. As it took a couple of weeks to show up as pregnant on tests, and his EDD was eventually moved two weeks later.

The NHS offered to scan my cycles and I said yes… twice… but it never happened. My consultant thought we should be trying naturally, and wasn’t really keen. And I think it’s a case of resources.

Sorry for all the info. I wish I had had more info when we were right in the thick of it.

All this to say that I wouldn’t stop trying, if you and your partner and your DC are in the right frame of mind. And def get into a clinic for the tests/discussion/support.

The other test you can have is a blood test for you and your partner to scan for any genetic disorders and anomalies. And a family councillor talks you through that. We had that, and the above, on the NHS. It was the cycle scanning and openness to medication that we got through private ivf.

@InfantHercules thank you so much! Your information has been very very helpful!

Immune issues play a huge role in unexplained cases imho - look up the natural killer cells thread (pred thread) in conception.
That and mthfr mutation and thyroid issues. For example I cannot process folic acid, nor can quite a few people, it makes me ill and I have been taking it ttc when it was actually causing me harm (symptoms went after consultant told me to stop taking it). Natural folate is much better for me. See a functional doctor, test more than the nhs will, heal your gut etc.