Recurrent miscarriage success stories and advice

[Carminai]

Hello
I’ve recently had my 3rd consecutive miscarriage and I am looking for some hope and advice.
What investigations did you have and with whom?
Any success stories please (with or without medical treatment)?

I went privately for investigations after my 3rd miscarriage and I found I am homozygous for MTHFR and heterozygous for PAI-1. Advised to start heparin when next positive pregnancy test and Aspirin from week 8. I’ve done scan, blood tests for TSH, antiphospholipid antibodies, and trombophilia.
I am aware about the immune route of investigations but worried about the experimental nature of treatment so any views are welcome.
Thanks

I’m really sorry to read of your losses 💜

ive had 3 consecutive miscarriages too. All before 8 weeks and after heartbeats.

under our local recurrent miscarriage clinic, I’ve had the physical exam, like uterus and cervix etc. All fine.
Also had the standard bloods like thyroid and clotting, again all fine.

I had cyclogest But my third pregnancy was tested and sadly was chromosomal issue. We put a referral to Coventry in to see Professor Quenby and her team- so, hoping this may offer an insight for future attempts.

its such a tough journey -I hope you’re doing as well as anyone can be in this horrible situation. hopefully some women will drop a message with their positive stories! X

No solid advice but I had 2 MC and now into my third pregnancy (21 weeks + 4)

This time I had weekly acupuncture for miscarriage prevention in my first trimester. No idea if that's what made the difference but I'd be doing it again in the future incase.

I'm so sorry for your losses. I had 3 consecutive- 1 at 8 weeks after seeing a heartbeat, one at 6 weeks and then an ectopic pregnancy which resulted in the loss of a tube. I have endometriosis as well as polycystic ovaries (but not PCOS). I didnt get pregnant again for 18 months after the ectopic and had a HyCosy scan. The month after I fell pregnant again and now have a one year old son. I took cyclogest until the second trimester with him. God I felt hopeless at stages but he's here now. Don't give up hope.

@Kappi So sorry for your losses, it must be heartbreaking to see a heart beat and then to have a miscarriage. I also miscarried after seeing a heart beat and I keep wondering why, as I understand that after seeing a heartbeat the likelihood of miscarriage drops. Did you self refer to Coventry?
@Mangotango39 Congratulations for getting so far with your third pregnancy, wish you all the best
@Theduchy Congratulations, so good to hear positive stories. Did you have other investigations before your successful pregnancy?

Hi so sorry for your losses. I have recently suffered my 4th miscarriage despite progesterone heparin and aspirin use and currently having tests done at Coventry - some on the nhs and some privately. It’s so isolating and the heartbreak after seeing the heartbeat and at the next scan it’s no longer there. I feel like everywhere I go I see pregnant women and it’s a constant reminder

Sorry I didn’t finish my message:m. Under Coventry I had the bloods done and I have borderline APS. Prof Quenby has a protocol of aspirin progesterone and heparin for me based on by results. This however still resulted in a miscarriage. Next steps are genetic testing, a womb scan and a endometrial scratch which will look at my lining and uterine nk cells. I asked if she would prescribe me steroids in a desperate attempt but she said not unless we find something in the biopsy. I have an appointment with her colleague Prof Brosens privately so I cannot TTC currently until after the scratch is done. I was referred to Coventry by my GP after the early pregnancy unit told me to get my GP to refer me

I had my daughter after 4 miscarriages (3 consecutive) on the first attempt on Prof Quenby’s protocol after a raised uNK cell diagnosis. She’s very straight talking and down to earth - I’d recommend seeing her.

I know Prof Shehata is very big on the immune aspect and steroids and has a great success rate but I have heard Prof Quenby is just as great and he is a lot more expensive and very far from where I live so I am hoping Professor Quenby can help me. Her advice was to keep trying until I have my appointment with her colleague as many losses are genetic. I asked her if she really thought 4 consecutive losses could be genetic as it seems highly unlikely and she said an awful lot of pregnancies are lost due to genetic issues and maybe my new treatment will work but unfortunately a genetic reason could have stopped it. Sorry for all my messages it it just nice to speak to someone who understands this extremely horrible situation

Hi @Ttcafterlosses
I am so sorry for your losses. It is a brutal journey I feel.
So is Prof Quenby having a progressive approach? Started with some tests and then expanded the investigations?
I am so horrified of having another miscarriage, I would somehow want to know that I’ve done all the possible investigations before trying again.

Hi @Patchworksack
Congratulations and thanks for sharing your story. I know that some consultants ( the ones from St Mary’s recurrent miscarriage clinic for example) are reluctant about uNK being a reason for recurrent miscarriages but then there are so many successes stories from some who have taken this approach.
@Patchworksack and @Ttcafterlosses is Prof Quenby recommending specific supplements ( for example CO Q10) in conjunction with a possible treatment?

Hi I had 3 losses. The next one stuck. Didn't do anything different. Hope you get your rainbow soon x

Hi all
sorry to hear about everyone’s horrible experiences and lovely to hear about some positive endings. Hopefully we can all get there soon

Carminai - I haven’t been recommended any supplements but to be honest I have never asked specifically - I wish I had now. Prof Quenby is lovely and reassures me we will get there, to be honest I think we both believed my last treatment protocol would work but unfortunately it didn’t. The uNK cell testing was mentioned attached first appointment but we thought progesterone and heparin would solve my issues and that treatment would delay my TTC journey so decided not to go down that route. The womb scan and karyotyping weren’t offered until after the loss I had just suffered. My understanding is though that you can get all these tests done privately. The recurrent miscarriage consultants annd Tommys nurses seem so passionate and I have heard so many success stories as well as other consultants in London. I am not an optimist but trying to stay positive but i feel I have somewhat lost a part of myself with each loss. I am relieved I can’t TTC at the moment due to my upcoming appointment because it means my anxiety about trying to get and stay pregnant is under control - my mental health is not in a great place but I try to take each day at a time and try to believe I will get my rainbow baby and I am well supported by the amazing Tommys team at Coventry

@Ttcafterlosses I can totally relate, my anxiety is through the roof, and I am not in a great place mentally.
I will have a look and see how I can get an appointment with Prof Quenby.

@Ttcafterlosses What is the current waiting time for an appointment with Prof Quenby please?

Hello @Carminai I had 3 miscarriages then saw Dr Rai at St Mary's and somehow with no treatment had my eldest. Felt a bit patronised to be honest 'lose weight and some back later' I did lose weight but many friends in the recurrent miscarriage boat were not overweight.

Then had 2 more miscarriages and self-referred to Coventry where I saw Prof Brosens and he was amazing.
Did the 'scrape' - uterine biopsy - and bloods and got pregnant second cycle

Progesterone from CD21 up to 12 weeks pregnant and then heparin /clexane injections also up to 12 weeks (after a early 6 week scan to see if was implanted in the right place) and this gave me my second child.

So good luck, and I wholeheartedly recommend Coventry...

We are talking about 9/10 years ago and there is some light at the end of the tunnel...

Hi

I saw her within 2 months of being referred

Have you been offered any psychological support? Tommys midwives supported me and also mentioned the lullaby trust for additional support

As tinytear mentioned above I am also going to Professor Brosens at Coventry next whilst still under ultimate care of Prof Quenby for that same treatment. It’s £160 for the initial zoom consultation with him and then £700 for the procedure - the tests I have had with Prof Quenby so far have been on the NHS.
The data behind the scratch is apparently hit and miss but I haven’t looked into it too much because I am willing to try anything if I can afford it

Thanks so much everyone
I had a look on Coventry’s website and I cannot believe that my GP could have referred me there after my second miscarriage😢I remember asking my GP for a referral after my second miscarriage only to be told that I do not qualify for referral to a recurrent miscarriage clinic until I have 3 consecutive miscarriages and the usual bla bla that 2 consecutive miscarriages are common.
It’s simply cruel the 3 consecutive miscarriages rule anyway.

@Carminai I've had two MMCs and an IVF chemical. Had investigations with my IVF clinic and am clear for thyroid and sticky blood issues but was really deficient in Vitamin D.

I've been taking a high dose of Vit D every day since Jan now and am currently 8.5 weeks pregnant with a natural surprise. I've also been on progesterone since 3dpo with this one following a study I read about online.

I so hope you get your rainbow soon ❤️

@Carminai my waiting time for Prof Quenby has been about 3 months - the gp did my referral for me.

Hopefully you can get your gp to do the same - and that you can be seen very soon! Xx