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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Recurrent Miscarriage - Advice and positive stories needed please

38 replies

Saraa23 · 30/10/2019 13:52

I had a third miscarriage (in a row and within 10 months) 2 weeks ago. Because we have had 3 in a row this is classed as recurrent miscarriage and affects 1% of couples.

My first happened naturally around 5 weeks.

My second was a heterotopic pregnancy resulting in emergency surgery to have one of my tubes removed at just over 5 weeks and an SMM at just over 10 weeks.
My third happened a couple of weeks ago. I was 9 weeks exactly.

We can get pregnant really easily, but every time I have started to spot around the 5 week mark. Does this mean something? Why can I only get to a certain stage every time?

Because I've had 3 in a row, we are being referred for testing on the NHS. We have been told we will have to wait between 6-8 weeks which is fine. Well it's not. There's so much waiting. I want to know why this has happened now, but understand these things take time and my body needs to get back to normal before the tests can be done.

I'm now researching online, trying to find as much information as possible.

Has any got any success stories they can share with me to help keep me positive?
Has anyone been to any clinics they would recommend?

Thank you,
Sara x

OP posts:
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Nanmumandmidwife · 30/10/2019 14:10

Sending hugs and strength. 3 miscarriages in a row is very hard to cope with, particularly in such a short time.
Where are you in the country? Have you been given any advice so far?
I expect you already know that in most cases there is no explanation found for miscarriages. Sad and frustrating but true. Nature is just so complicated that it is incredible that it ever works right.
From a professional perspective, I would make the point that your second pregnancy being ectopic, although an awful thing to happen to you, is likely to be totally unrelated to the other two, meaning there is not "a reason" why the 3 have happened. Most losses do happen in the early weeks, just because of the complexity of what has to happen to get a pregnancy started and a baby developing normally.
Many fertility clinics offer a variety of interventions, but most are completely unproven to make a difference. In harsh terms they are cashing in on your situation. I'm happy for you to ask me if you are offered any "treatments" to look up research evidence etc for you.
Suggest you focus on using the time before your clinic appointment to get as fit and well as you can, allow yourself to grieve for the losses and build up your body's strength by eating well and taking pregnancy vitamins with folic acid.
I'm assuming there are no health issues for your or your partner, no current medication etc, and no family history.

moobar · 30/10/2019 14:11

Hi OP. I'm sorry for your losses. Thanks

I've been there, just awful. So I had many miscarriages, over many years. I also had periods of failing to fall pregnant which resulted in IVF, which also failed.

In Autumn 2017 nhs discharged me with diagnosis of unexplained infertility. I saw a private specialist in December in Newcastle who put me on the long waiting list for a donor and referred me to dr Siobhan quenby in Coventry for recurrent miscarriage treatment. She agreed to see me as I next miscarried. I fell pregnant that spring and have DD. No idea why. Neither to doctors.

Things that were the same, I bled at five weeks and fully expected to miscarry.

Different, I took aspirin every day 75 mg from Autumn 2017 until she was born October 2018.

The only other thing was in 2017 I got my hair analysed and took a six month mineral course to address issues. That is not medically based but showed high levels of copper and lead ( we have a private water supply).

Baby was born with a full head of thick hair though so I take that as a sign I was on to something!

I don't know why DD is here and the others are not. It's been a long and difficult journey.

I hope you get some support and answers. The nhs testing is very basic but it gets the process started. Good luck.

GrumpyHoonMain · 30/10/2019 14:18

While yes you have had 3 miscarriages they seem to be a mix of different types from early to ectopic to later on. That could, possibly, just be down to bad luck. The NHS will focus on main causes of miscarriages ie thyroid problems, some clotting disorders, some genetic, and some autoimmune problems. If they find something then great if not then you will need to visit a fertility clinic for indepth testing. For example I have a rare clotting disorder and a rare autoimmune problem that is known to cause implantation / early losses but I wasn’t able to get pregnant to miscarry due to ovulatory problems too. My fertility clinic treated me proactively based on current research (based in countries where both conditions are more commonplace) but my NHS consultant did say I wouldn’t have received any treatment with the NHS because they don’t view those conditions as a problem. Presumably because they rarely affect white women Hmm

crosser62 · 30/10/2019 14:41

Hi, you have had some fantastic replies here.
From my experience of multiple miscarriages (7 in total) and referral to reoccurring miscarriage clinic I would 100% agree with nanmum in her post.
I got no answers, I received treatment not based on any evidence and for me I feel it was disastrous and caused more bleeding, pain and increased to length of the miscarriage when pregnant on this treatment. I was desperate and it offered me hope. On reflection it was a bad decision.
I was given blood thinning injections, high dose folic acid and pregnancy vitamins.
I knew that clotting was not my issue and the cause of my miscarriages. I agreed anyway.
We gave up all hope. We were advised that egg quality was the probable cause.
With no reason, with no intervention, with no hope or effort I again became pregnant. I was 43.
I had a healthy pregnancy!

Bizarre how nature works, bizarre!

moobar · 30/10/2019 14:50

@crosser62 bizarre isn't it, same here with DD. I agree re the false hope and intrusive tests. IVF!!! Now I'm like what the hell. So that was at a point of two years with nothing but I had been falling pregnant. IVF nearly killed me, for nothing. I should never have agreed to that.

Saraa23 · 30/10/2019 15:23

Hi everyone, and thank you all for taking the time to reply. It’s so nice to hear positive stories 😊 😊

Nanmumandmidwife:
I stay in Aberdeen and I’ve been referred to our local recurrent miscarriage clinic which is in the fertility centre at the maternity hospital. I’ve not been given any advice so far. I’ve only had my appointment through for our bloods to be taken. That is a very good point about our second. I never thought of it like that. There were 2 babies in my second pregnancy – 1 was removed along with my tube, and the other was in my womb, however, it died around the time of the operation and I guess I’ll never know why that one didn’t make it. But a very good point and has made me feel so much better so thank you.

Also, thank you so much for your kind offer to research evidence. I will definitely be taking you up on that offer. My bloods are being taken on 21st November and I’ve been told the consultant will meet with me around 2 weeks after this date. I’m just panicking that there is something wrong that they can’t fix. Luckily, we have managed to get pregnant straight away every time and I’ve come across hyper-fertility. What’s your professional view on this?
The midwife said to stop taking folic acid and vitamin D for the time being? What other pregnancy vitamins would you recommend I take?
We have no major health issues, although I do have 2 x autoimmune conditions which makes me panic that I’ve another one causing my miscarriages. I’ve also read up on uNK cells, but again, evidence is varied on this.

Moobar:
I’m so sorry to hear that you have also experienced pregnancy losses. I’ve seen Prof Quenby’s name pop up on lots of sites and I’ve made an appointment with my GP to be referred to her recurrent miscarriage clinic. Her colleague Prof Jan Brosens does the uNK Cells testing which I am considering if the NHS tests come back as inconclusive. I’ve never heard of hair analysis and this is very good to know. Thank you and congratulations on the birth of your DD 😊

GrumpyHoonMain:
Sorry to hear about your losses. It’s such a traumatising thing to have to go through. Do you mind me asking what rare autoimmune disorder you have? I have 2 autoimmune disorders so chances of it being immune system related is maybe higher?

Crosser62:
7 miscarriages – I can’t begin to imagine how that must have been. I’m so sorry. I’ve bought the book “It starts with the egg” to look at ways to improve egg quality. I’m willing to try anything!! Thank you for your reply and congratulations on the arrival of your little bundle.

OP posts:
Blondiecub0109 · 30/10/2019 15:34

Hi I’m in Aberdeen too!

Slightly different situation as I needed ivf whatever as my OH had low sperm count due to teenage mumps.

I miscarried our first 2 embryos despite them being good quality.

I couldn’t go through a third transfer without doing something so I self referred to Coventry and did nUK testing. After the first test (which is basically an endometrial scrap) they advised me to go ahead with an frozen embryo transfer.

I did - and got my son. I’ll never know if it was the scratch or luck or just the positivity of feeling like I was doing something after years of feeling helpless.

Stay strong and happy to answer any questions you might have x

Saraa23 · 30/10/2019 15:41

Hi Blondiecub0109,

So sorry to hear all that you've been through, but it's very nice to hear you got a happy ending - congratulations :) It's also very reassuring to hear that you also went to Coventry. I've come across a few positive stories about the scratch which is great to hear. I try to remind myself how lucky we are to have options and procedure to try and that all hope isn't lost.

Being from Aberdeen, can I ask how you got to Coventry? I've been looking at options as I've got the leaflet through and will go down 7-10 dpo (I will be waiting until the new year once I've had my test results back). Did you go down and back in the same day?

Sara x

OP posts:
Squashpocket · 30/10/2019 15:49

I second self-referring to Coventry. Prof. Quenby is very very good.

Sarraa · 30/10/2019 15:54

Thanks Squashpocket :)

Blondiecub0109 · 30/10/2019 16:05

Flew down on Flybe to Birmingham, there’s a large train station at the airport, 20 minute train ride to Coventry, taxi to hospital. I got met by relatives there as I’m not from Aberdeen originally, but you can just about do it in a day if you ask clinic to make you early afternoon appt. (well the flight tones when I did in May 2018)

From memory the clinics are Monday and Friday afternoons

Sarraa · 30/10/2019 18:07

Thank you Blondiecub0109. That’s really helpful Smile

MrsEG · 30/10/2019 18:15

So sorry to hear what you have been through. I also had 3 losses back to back; two happened naturally at around 6 weeks, and one was a blighted ovum - I had a D&C at what should have been 11 weeks.

I was also referred via the NHS for tests but in my absolute grief at the time I paid for the tests privately; whilst waiting for the results to come back I also fell pregnant again (I still can’t believe it happened, given how much effort we’d put in to trying the 12 months prior - we conceived at random after sharing a bag of fish and chips on the beach on my birthday). I called the clinic and they rushed my blood results through and I did have a few issues; they issued me the medication the same day and I started taking it at what I now assume was about 4.5 weeks. Luckily, it worked - I am now 23 weeks pregnant and unbelievably, expecting twins.

The tests in my experience are worth it - I know now there are reasons I can’t carry a baby naturally on my own. The treatment also was fine; steroids and blood thinners - nothing I couldn’t handle. I still feel extraordinarily anxious at times, the wait for the 12 week scan felt like time had stood still. But we got there!

I know private treatments aren’t always an option for everyone and I think we spent £1200 total for the tests and initial medication (they then transferred us to the NHS) but it was so worth it for us. I don’t think I could have waited the 6-8 weeks for my appointment.

Wishing you all the luck in the world!

Sarraa · 30/10/2019 18:37

MrsEG - what an amazing story and huge congratulations! How lovely 😊 Thank you for sharing. Do you mind me asking what you were prescribed the steroids for? Was it uNK cells?

Sara x

MrsEG · 31/10/2019 06:43

@Sarraa No problem - I was on the Steroid due to very high thyroid antibodies. I was weaned off then at 12 weeks. I also took Clexane from the get go and switched to aspirin. Also taking levothyroxine to keep my TSH stable! I was like a little walking pill cabinet in the early weeks! I really remember being quite terrified when the results came in though as it sounded like there was all sorts wrong, but the drugs all worked :)

fnej01 · 31/10/2019 07:24

Hi ladies,

Just to add another positive story, I had 3 MC and a CP. Between St Mary's in London and Coventry I was diagnosed with multiple issues.
Currently 19+4 and on a treatment of clexane, steroids, aspirin and progesterone. All looking good. I wouldn't have got here, without fighting for the tests and diagnosis but there is definitely hope. This is a totally different pregnancy now on treatment.
Good luck
X

Patchworksack · 31/10/2019 07:38

Sorry for your losses OP. I had 4 in total, 1 at 10 weeks in between my 2 boys, then 3 in a row trying for a third. The NHS tests didn't find anything and I went to Coventry to see Prof Q who diagnosed high uNK cells. I had a successful pregnancy first time on their protocol. The long running 'pred thread' on here was very supportive at a tough time and I'm still in touch with many of the women who were going through it at the same time as me. To have the Coventry testing you need to be at a specific point in your cycle and not pregnant, so I'd recommend having a complete break from TTC to get any testing done and come up with a new plan. You must feel like you've been through the mill physically and emotionally, it can be restorative to have an enforced break and concentrate on yourself for a bit.

Ginmonkey84 · 31/10/2019 08:25

Just to add another positive story. I have had 5 MC in total first four being almost 11-12 years ago. They were pretty much back to back and after extensive testing other than an issue found with my husband they couldn’t find any reason for our losses but put it down to possible egg quality. After 5 years of trying we just couldn’t fall again and in 2012 we went for IVF. Out of 13 embryos only 2 survived to day 3 so it was as clear as day that my egg quality wasn’t up to scratch and I had a huge embryo quality issue. Thankfully those two embryos stuck and we had our twins in 2013. We fell pregnant naturally this year without even thinking it could happen but unfortunately miscarried at 8 weeks. But I was pregnant again within 16days after that miscarriage and I’m now 21 weeks with an absolute miracle. In a way I’m thankful that nature had realised something wasn’t right from the outset and I have two soon to be three healthy children. That helped me through some of those darker days. Conception is so complex. I am sure your forever baby won’t be too far around the corner. In the meantime focus on you and grieve for your losses with the positive intention of moving forward and hopefully getting some answers. I really wish you all the best X

Sarraa · 31/10/2019 11:36

Morning ladies and thank you all for your positive stories. It really does help boost my mood and outlook. I’m finding this miscarriage the most difficult yet. I think because I’m now that 1% and I’m petrified we won’t get our baby ☹ But I have to keep as positive as possible and try everything that’s available.

MrsEG – thank you for the info. I’m making a note of all the medications I am finding out about and will be bringing them with me to my consultation.

Fnej01 – sorry to hear about your losses, but big congratulations on your pregnancy. Do you mind me asking what issues you were diagnosed with? Were these issues picked up by the NHS tests?

Patchworksack – Thanks for the info and sorry to hear about your losses. But it’s nice to hear someone else who got their happy ending under the care of Coventry. I will 100% be taking a break from TTC. I’m going to wait until after the NHS tests results and depending on the outcome of those, will go down to Coventry. Would you recommend I go to Coventry regardless of the outcome of the NHS tests. I know that waiting is the best thing for us right now, but it’s just so frustrating when having to wait for something you want so badly.

Ginmonkey84 – What a tough time you’ve had. I’m sorry. But what a great outcome. Can I ask if you had done anything differently this time around or was it by chance? It blows my mind the number of women who have multiple miscarriages, then they next one just takes.

Sara x

Aneley · 01/11/2019 07:05

I am so very sorry for your losses. I know how devastating that is and I hope you and your partner are getting a lot of support. We had 4 miscarriages. 3 were early (5-6w). Then we had an IVF (privately) but had an MMC at 8w. We were completely and utterly destroyed. That last one was in 2017. Then nothing was happening and we decided to take a break in 2019. I stopped taking metformin (the only thing they found was my insulin resistance) and aspirin (though they never found any blood coagulation or circulation issue). I went on a diet and took only vitamins with some extra D vitamin. 4m later - I was late and now I am 33w pregnant with our daughter. I will never know what was it that made it happen this time, but it is our little miracle and I really hope you have yours before too long!

Sarraa · 01/11/2019 09:35

Morning Aneley.
Thank you for your reply and sorry to hear what you've been through.
Congratulations on your lovely news. Isn't it amazing that it 'just happens'. I really hope it 4th time lucky for us. I don't think I could mentally go through another miscarriage, but it's still very raw.

What diet was it you went on? Also, what vitamins were you taking?
Sara x

Aunaturalmama · 06/11/2019 16:39

I use to have them A LOT miscarried around 6 to 8 weeks each time. I ended up doing genetic testing and found out I have a gene mutation that doesn’t process synthetic folic acid to folate. When you don’t have enough folate you misscarry. All I did was take I think it was 1200 mgs of folate while trying and then either 800 or 1,000 during my entire pregnancy. I am 10 weeks with my third child- a baby girl :) have two healthy living boys

Sarraa · 06/11/2019 18:58

@ Aunaturalmama thank you so much for sharing this! Another positive story ☺️ Were your tests through the NHS?
I’ve only another 2 weeks until my blood tests and it’s great to know about all of this to help prepare for the consultation. Thanks again and congratulations ☺️

AD1986 · 18/11/2020 17:13

Hi All,

I've gone through exactly what the OP described, 1 ectopic and 2 early miscarriages. I'm awaiting the referral to undertake some tests.

I'm wondering whether you got any answers OP? I'm finding it such a struggle to remain positive x

Confused38 · 22/11/2020 11:27

Hi,
Can I join the thread?
I am awaiting surgical management for a mmc on Tuesday. I found our yesterday morning there was no heart beat at 7+4 after seeing a heartbeat at 6+1.
This is my third mc.
My first was a mmc picked up after 2 weeks of brown spotting at 11+5. It had stopped growing around 6-7 weeks. This was in April 2019. I ended up in hospital and it was all very traumatic and saw me off work for 5 weeks to recover.
My second was an early mc at 4+5 and was just like a heavy period (this one affected me the least) I was back at work within a week. This was in January 2020.
My third one is now. I self referred to epu after 2 days of brown spotting 2 weeks ago. Scan was dated at 6+1 ( I thought I was 7.0) we saw a heart beat and got so excited that this was it. I was told to go back in 2 weeks if still spotting. That was yesterday and no heart beat was found. It had stopped at 7+3.
They wanted me to manage it conservatively but after last time I have said no. I need it to be taken out.
My gp said they can refer after 3 in a row but he said the odds were very much in my favour this time and that 3 in a row was a rare occurrence. Well unfortunately I am in that rare bracket.
I am psychologically destroyed right now. I don’t even think I want testing. I’m thinking that this is not worth my mental well being and I should just be happy with my life.
I am 40. I will be 41 in May. We have no children.
Thanks for listening.

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