Secondary recurrent miscarriages, advice on what questions to ask docs.

[Waitandwine]

I hoped you may be able to help me with what questions, things to be aware of, when I have an appoint with Nhs consultant next week.

I have a daughter 2.5, but have had 3 miscarriages ( all before 9 weeks) in the last 18 months, 1st Dec 2014, 2nd Dec 2015 and the last one a few weeks ago. So have been referred to local hospital for appoint with consultant, some blood tests have already been requested do hoping they may have the results.

Any advice, guidance, words of wisdom would be much appreciated xx

Sorry for your losses. The NHS have a pretty set recurrent miscarriage protocol, basically a set of bloods and a scan. If you've had a previous child it's unlikely you have anything structurally wrong. You might get offered a 'just in case' protocol like baby aspirin even though research showed that causes more MC than it prevents or progesterone. 50% of the time they don't find anything wrong.
I had 3MC after my 2nd child, tried again and lost a 4th on their 'might help' protocol, got genetic testing and it was normal. Until then I'd swallowed the 'bad luck' bollocks. After that I went to the Coventry University Hospital implantation clinic run by Prof Quenby/Brosens and got an actual diagnosis ( high uNK cells) and treatment and my next pregnancy was successful. It is self funded, self referral NHS treatment, it costs about£360 and it is worth every penny. You have to be at least 2 cycles post MC, not pregnant and you go at 7-10 days post-ov for an appointment, scan and uterine biopsy. Results and a treatment protocol about a month later and then you can TTC again.

Thanks so much for that info Milo, that sounds really interesting. I am so pleased you had a successful outcome. My docs who requested the bloods for me already mentioned baby aspirin! I will definitely look into that as I'm nearly 38, also I'm not sure I can cope with another miscarriage!

www.mededcoventry.com/Research_and_Development/Facilities/Implantation%20Clinic%20leaflet.pdf

I took low dose aspirin, heparin and progesterone and it worked. That was 10 years ago and I was 40. I remember there being debate as to whether or not you should start the aspirin before or after a positive pg test. Things of course may have moved on from then. Do as much research as you can. Good luck to you.

That's really helpful Blue, thanks. I agree totally about research, I want to make sure I know as much as I can so can make the right choices x

Actually, there can be something structurally wrong, even if you have had a first child, if you have had an ERPC after a subsequent miscarriage - adhesions, aka Asherman's syndrome.

Another thing to consider is that there may be different reasons for the m/cs. One of mine was a trisomy so a m/c would have been a natural thing. Another could have been the result of a lost twin earlier in the pg (I had some early bleeding and a scan showed an empty sac). This could have led to an unfavourable environment for the other one. Then there were also the positive blood tests for Lupus Anticoagulant (Hughes Syndrome). I think that sometimes these blood tests also came back negative so I believe it is something that can fluctuate.

My appointment today at the hospital gynae clinic was a total waste of time. Because I had already been to another consultant at same clinic for a different reason, they said I should see him (even though he referred me to this one!) talk about being caught up in internal politics. They only did half the tests requested as a mistake was made! so all need to them redone and wait for another appointment!

So going to book in at Coventry as Milo recommended.

Sorry your appointment was an anticlimax OP. I have one DS (4yp) and started TTC #2 last year. After 3 mc's (July 15, Nov 15, March 16) I have got on the recurrent mc clinic merrygoround. Been to st Mary's London (another anticlimax) Coventry (very positive!) and waiting for my local rmc appt next (not expecting much!). Just had blood tests requested by them but was a palarva as the form was imconplete and I wasted a lot of time with the phlebotomists scratching their heads going back and forth trying to figure out what blood they needed to take and I am losing faith that they will be of much help to honest.

I have a lot more faith in Coventry, it was super easy to get an appt and compared to the other two clinics I felt very well looked after and taken seriously. We had a good discussion with the prof who was sympathetic and kind. Well worth every penny. Waiting for my results in the next week or so and hopefully following their plan when we TTC again in a month or

Give them a call. Good luck and don't be disheartened! X

Thanks for sharing your experiences Lucinda. It's soooo frustrating isn't it! It seems that Coventry shines out as being the most helpful. I have sent them an email tonight, so hope they can help me.

Let us know how you get on xx

Huge thanks for the advice about Coventry. I had my appointment yesterday, so now to wait for the results in 4/5 weeks. They were so nice there, I really feel if anyone can help me it will be them. I'll keep you posted xx

So glad u had a positive experience with Coventry OP. I got my results back in just over 3 weeks, so keep an eye on your emails! They found I had raised uNK levels and have prescribed steroid treatment for my next BFP. We have waited to TTC for a number of reasons (partly fear, partly due to me getting a new job!) but aiming to get cracking next month.... nervous xxx

That's sounds very exciting Lucinda, three weeks is fab, I have set my expectations at 5 weeks any earlier is a boys! I thought they were a breath of fresh air in comparison to my local hospital. Keep us updated....I have everything crossed for you X

Thanks wait rooting for you too! let me know how you get on xxxxxx

Quick update. Got my results back in a super quick three weeks! Came in a 2.76 which is well within normal, so feeling very positive that the progesterone they have prescribed is enough 😀

Hope things are going well for you Lucinda, let's hope we get to share good news soon xx

Great news OP! good luck I am keeping everything crossed for u. I shd be ovulating next weekend and I'm feeling nervous/excited! Xx are u on the TTC after miscarriage thread on the conception page? I'm hovering over there but nervous to really admit I'm TTC again!

Hope it's going ok Lucinda and its your month! Was prescribed clomid from docs and the blood tests are showing that I need a higher dose, but didn't get prescription through in time for this month so still on lower dose, so not much hope this month - but worth a go anyway!!!

Good luck wait! Deffo worth a shot. Glad you have got some meds to help. I'm on cd27, been taking progesterone since cd21 (not terribly pleasant but ok!). Coventry told me to test on cd28 but I caved and did an early one yesterday on cd26 - BFN! I don't feel pregnant at all and any symptoms I do feel I'm putting down to the progesterone....so I'm not holing out much hope either. Gonna POAS again tomorrow but pretty sure it will be another bfn. Disappointed but also trying to look on the bright side - gives me a chance to focus on my new job which I'm really enjoying at the moment, and lose a bit more weight!!

Keep me posted on how you get on. When will u be testing? X

I have everything crossed for you. My clear blue dual was flashing smiley's for the last 4 days (which is really early) but the ic opk's are still def negative. So no idea what is going on with my system. Hoping will ovulate... So that's the first hurdle! If I do,Will try and hold out for preg testing 12 days dpo ( Although I always cave and test early!!)

Have been given the progesterone too, so hopefully that will help.

Just waiting for my consultancy call from Coventry as I had to cancel the one they booked as I was on holiday so still waiting for a new date. Although not sure they can tell me much as my test was normal, just mega unlucky then!!!!

Let me know how you get on x

Oooh good luck with the flashing smileys/opk's! Have u tried temping alongside this? I have tried many times in the past without success, but this cycle have been really strict about doing it at the same time in the morning before even sitting up in bed, and I finally got a definite temp shift at ovulation! Was so relieved to see it. Helped with the opk's.

Hope the consultation goes ok with cov, I've heard other ladies with normal uNK's have sometimes been offered treatment plans but not sure what they involve. At least u have some meds and progesterone to use anyway, that's great news.

I POAS this morning and got the faintest shadow of a line!! I also waited another few hours and did another test this arvo and got another incredibly faint squinter of a line. I'm sort of in disbelief, and not really taking it as a certain BFP - I'm 13dpo and wld have expected a stronger line by now and these are SUPER squinters. One of my mc's was a chemical at 5 weeks so I'm half expecting it to go that way, but we will see. Gonna do another test tomorrow (or Monday if I can hold out that long) and see what happens. But I've stayed on the progesterone and started prednisolone just in case. Keeping everything crossed x

Oh wow! That is so exciting, I'll have everything crossed it gets darker over the next few days for you.

After having miscarriages it's so hard not to worry. Lets hope your meds make the difference xxx

Thanks wait. Unfortunately looks like another chemical pregnancy! Lines were progressing very very slowly which was a bad sign, and today looks like it is now getting fainter. Feeling very deflated but only first attempt on the Coventry treatment plan so will try to have another go and hope for better luck.

Good luck with ur consultation with Coventry. XXXX

Oh you poor thing, I was so hoping it would stick for you. Sending big hugs

I just wanted to give some hope.
I had my son nine years ago, then had 5 miscarriages over 3 yrs...between 5 and 10 wks.after three I got referred to st Mary's special miscarriage clinic. But after another miscarriage they couldn't do much and couldn't explain why was happening
I then read about dr shehata based in Harley street, who has helped a lot of women with unexplained miscarriages. After another miscarriage and trying steroid treatment we now have a four year old daughter so good luck and don't give up.