First steps in testing after second MMC

[sweetpea2000]

I've just had a second MMC following another one in the summer.

I know it's not technically treated as 'recurrent' until you have 3. And I understand why, as 2 consecutive MCs are still more likely to be sporadic/ chromosomal than have an underlying cause.

However I'm feeling fragile, and reluctant to just try again if there is an underlying cause that could be treated next time.

I'm happy to pay for it, but just trying to get my head around the right tests, which is pretty overwhelming.

My pregnancies ended at 8 and 6 weeks. From the reading I've done (Lesley Regan's book) it seems like that is most likely due to 'sporadic' chromosomal causes OR a recurrent issue with clotting/ immunological factors. Does that sound right? It's all so confusing and I feel like I need PhD just to be able to plan a safe pregnancy.

From what I've read online, there are 'tier one' tests which are commonly covered by the NHS in recurrent miscarriage clinics. These look at Antiphospholipid Syndrome (APS) and other clotting problems, as well as anatomical irregularities, and Karotyping.

Is that right? And then if those tests are inconclusive, there are 'tier two tests' which include NK cells and other more controversial immunological factors.

I'm just wondering if it's worth me getting the 'tier one' tests done privately. I know I'm not eligible on the NHS, but am willing to go privately to eliminate any obvious problems before next time. Can anyone make a recommendation of where to get this done?

Thank you!

I was going to ask about early scans, can't believe they won't see you 😔 hopefully the changes to the lockdown might change that. Do you know what week they would normally offer the early reassurance scan? But yes, there is always the option to do a private one.

That's good the GP prescribed you progesterone. It sounds like you have a good GP who is actually listening to you and your concerns, so I'd definitely ask about the aspirin and see what they advise.

I've got my smear booked in this Friday and then I'm due to ovulate the following week. It took me 1 year to get pregnant 1st time and then 2nd time it was first time we tried, so I've had 2 extremes! So not really sure what to expect going into trying again, trying not to get my hopes up it will happen soon.

Keep us posted on what the GP and consultants say, and I've got everything crossed for you 🤞xx

hey, Ive been prescribed aspirin but basically just because I pushed for it. have read some information saying that if you dont have a known blood clotting disorder, and especially in first trimester, to not take it, and that it can be harmful. so have for now decided to not take it, but really anxious im making the wrong decision and that ill have a third m/c and then find out I have APS or the likes and could have saved this one:( god this is stressful! xxx

Hi @Skattycatty123, I don't know if this will help, but I have now been told I do have a clotting disorder (not APS but another one) and even then I am not supposed to take Aspirin for the first 8 weeks. I'll be taking Heparin from a positive test to 24 weeks, and only beginning Aspirin from 8 weeks. I asked whether I could start it sooner but was specifically told not to.

He quoted studies which have shown that taking Aspirin in early pregnancy can increase the risk of miscarriage, if you do not have a corresponding pro-thrombotic disorder. So it's not even recommended for all pro-thrombotic disorders (it is for APS, but there are others).

I looked this up in Lesley Regan's book and it's referenced on p.222. If you don't have the book, I can PM you some screenshots if that's helpful. It specifically says that the research at St Mary's has led many doctors to think that taking aspirin in early pregnancy is the answer for all women who have suffered miscarriages, but in fact it's only effective for those with specific prothrombotic disorders. For those with unexplained miscarriage, it actually increases the miscarriage rate.

I think it's really unhelpful that the NHS hasn't reviewed all the research and agreed on this, as it leaves us trying to navigate all this complex information.

Going by what my doctor said, and Lesley Regan's book, you are doing the right thing not to take it, if that helps put your mind at rest.

I think, ultimately, you have to remember that after two miscarriages it's still more likely that you don't have an underlying cause, and your chances of a healthy pregnancy this time are high - over 70%.

I know it's so hard waiting though. Sending you lots of support.

Hi @sweetpea2000, thank you so much for your response. And oh, thats good that they have found some answers, although Im sure its natural to feel worried to re a clotting disorder? Have they been helpful at all with providing advice etc on long term management etc? Which blood tests did you have done? I agree that it really leaves women to fend for themselves and decide on treatment, rather than providing us with clear cut answers. I spoke to a very helpful tommys midwife yesterday who kind of agreed with me too, re there is not much to indicate at present that i definately have a clotting disorder, and aspirin before 8 weeks is not recommended routinely. she said there is more an indication that it could be progesterone as ive had bleeds in both my m/c, and thus taking the progesterone pessaries may be useful. im a nervous wreck though, ive signed off work as i cant sleep, constantly checking for blood, worried we did the wrong thing not waiting to get tests before we tried again. im worried im not feeling nauseous or have sore boobs yet, although i know its still so early and im likely no more than 4 w 4 days along. and then i start worrying the stress in itself will harm the baby. its just weird because i dont feel pregnancy, but the tests are definitely very strongly positive, much more so than for my second m/c. but who knows whether that is an actual good sign!!

anyways, rant over haha, hope you ar well and thanks for your helpful post, and im so glad you have some answers!! xxx

Hi @Skattycatty123. I feel good to have answers and a plan going forward, but still just feel in limbo and so sad that this was likely the reason for my losses. Just have to look forward now and try again.

That was a great idea to contact Tommy's. I think it's good that you're off work and focus on self-care, especially if you're not sleeping.

You definitely wouldn't expect to have symptoms already, plus lots of people don't have them at all.

And stress definitely won't affect the pregnancy.

It's good that you got pregnancy again so quickly and this one really is statistically likely to work out. That's why they recommend you don't usually investigate unless you have 3 consecutive losses.

Will you book an early scan? Then you can just aim for that. I know it's so hard waiting in the meantime x

Hey @sweetpea2000, I can imagine it must be a mix of emotions like you say, and feeling in limbo. is it a genetic clotting disorder then rather than APS that seems to be acquired in some cases?

youre right, im trying to focus on the positives, and that statistically this is likely to go well. but i also feel a bit in limbo before actually having a scan or any particularily bad symptoms.

Ive booked an early reassurance scan privately, as nhs wont offer one due to covid, so i have that on the 11th of march, and trying to keep myself sane until then is proving quite tough haha!
xx

@Skattycatty123 yes, mine is a genetic mutation rather than an acquired condition. It’s so strange to think that this was determined at the moment of my own conception and I’m only just finding out now. It’s just an unlucky combination of genes - I have 3 older sisters who have had 7 healthy pregnancies between them and no miscarriages.

The limbo is so hard and I think it’s just a case of accepting it will be hard and being kind to yourself. Yoga, meditation and gentle exercise are all supposed to help but I know last time I was too anxious to even do that. I just went to bed early and slept as much as possible.

I think it’s better not to get into symptom spotting. It feels reassuring to have symptoms but it’s really not conclusive. I never thought I would be wishing for morning sickness! But I actually had quite string symptoms after my first pregnancy had failed and some people have no symptoms at all, even if they have in previous pregnancies.

It’s great you have a scan booked, and if you have a healthy 8 week scan, your chances of having a healthy, full term pregnancy are then 95-98%!

Try to think of that and feel free to reach out on here anytime x

@sweetpea2000 pleased you've had some answers from your tests and you know what needs to happen going forward. It's tough finding out something is 'wrong' as you wish you had known before you even started trying to conceive. This whole thing feels like a minefield sometimes!

@Skattycatty123 how are you feeling? Did you have the early reassurance scan? Hope all went well if you did 🤞

I didn't ovulate until day 23 this month, so looks like I'm in for some long cycles again 😭 it makes it even more difficult when ttc as it just feels like so long before you can try! In the 2 week wait now so just trying to stay as relaxed as possible, but I know it's going to get more difficult as the days go on xx

Hi @KB86 thanks for your message and @sweetpea2000 sorry re delay in reply, ive basically just been a nervous wreck trying to keep sane whatever way i can. How are you?? Scan showed strong fast heartbeat measuring exactly where i thought i was based on opk and temping, despite lmp being much earlier , however that was the miscarriage so wasn't a normal cycle at all. I felt reassured but tbh still very anxious especially as nausea isn't as bad this time round. But ive still been sick every day since Monday but finding the nausea in between less severe and the food aversion not as intense as last time, so of course am freaking massively. Ive basically just committed to weekly private scans (bye bye savings, but that's if i even get to next one) but im not sure i could cope otherwise. So got another one booked for Wednesday and still trying to not think of it as a baby but more as a milestone each week that may possibly lead to a baby, but absolutely no
guarantees.

@KB86 two week wait is the worst!!! I recommend lots of crap netflix, walks and candy crush as distractions 🤣

Hey guys so literally an hour or so after writing that post i had some pain and bleeding, i did go into a n e and they saw me pretty fast, but they were not able to scan me but hopefully tomorrow or monday but they seemed pretty sure its a miscarriage too. Feel surprisingly numb and in a way i guess i was expecting it, and at least now ill actually get support and tests xxx

Oh @Skattycatty123 I'm so sorry. I've got everything crossed things are OK, but I know after going through it twice before it's natural to assume the worst. How are you feeling today? I hope they can see you for a scan ASAP xx

Hi sorry re late reply! Basically had intermittent spotting with some red since my message, was scanned by EPU and thry diagnosed a small subchorionic haematoma. Rescanned today and measuring 8 weeks +3!! Still feeling pretty nervous as i had some red bleeding whrn i wiped yesterday but basically the consultant that scanned me today said everything looks fine on scan and thats all that matters. Still not getting my hopes up, but so far things are at least progressing.... Just hope the small bleeds stop as they really freak me out!! Hope you are getting on OK!! X

Hi @Skattycatty123 that's great news, I'm pleased everything is as it should be on the scans! I bet you've been so worried :( have you been having private and NHS scans?

Guess what I got earlier this week.... My BFP! Totally mixed emotions at the minute! Xx

Yes its been pretty stressful!! Just trying to get by day by day really and try not to think about it too much. Ahhhh thats amazing news, gentle congratulations, i know it can be a bit overwhelming. Are you going to start taking any meds etc, you had a clotting disorder diagnosed if i remember correctly?? Xx

Yes I met the consultant yesterday who sorted out my prescription for 4 weeks of progesterone pessaries and blood thinning injections (hoping I get used to them because it was awful last night!)

Are you still on the progesterone pessaries? I'm hoping my GP with proscibe them after my 4 weeks is up if everything is still OK by then x

aw brilliant!

oh also realised i forgot to reply re scans, I have had a couple done privately, and was only scanned early by EPU due to bleeding, and they are rescanning me on tuesday. they wouldn't have offered early reassurance scan due to covid restrictions despite history of miscarriages atm. all i would say if going for private one, dont book it too early as can cause extra stress, had one at 5 weeks (but didnt know i was only five weeks due to LMP being irregular and in fact my last miscarriage) and could only see sac and yolk then, so was so nervous the week after!!

Ive been seeing a private gynaecologist and hes prescribed me progesterone pessaries to take twice daily and recommended i do so until 16 weeks, i think because ive had bleeding its more indicated now too so that's why 16 weeks, as my gp had only prescribed to 12 weeks. i try to take one in am when i still have some time to lie in bed so it doesnt all "run out" (sorry tmi) and one at night time right before i sleep.

oh lord blood thinning injections sound tough! are you on aspirin too or does that come later? x

I hope nobody minds me jumping on here to ask, but how do you go about finding somebody to see privately?

I’m in the midst of my second consecutive miscarriage and I feel this overwhelming need to be proactive because I don’t think “oh it’s just bad luck. Better luck next time” is good enough. I am in a position to pay for some private investigations, but I don’t know where to even start looking.

Hi @Polarbear63, so sorry you're having to go through this, ita truly heartbreaking. Where are you based? It probably depends on your area. Tommys charity Birmingham branch i think accepts referrals after two consecutive miscarriages if your gp refers you, mine wouldn't refer me there though. I found a list om tommys of common tests done following recurrant miscarriages ans my gp did some of them for me when i asked. I also asked for progesterone pessaries from gp which they gave after consulting with gynecology. I also spent some time googling private consultant gynecologists etc specializing in recurrant miscarriage in my area and got in touch with mine that way. Hope you're ok and take plenty of time to rest and recover xxx

I called the private scan place yesterday because I didn't know whether to go from LMP or ovulation date with me having a really long cycle, and she suggested booking for 3 weeks after the 1st positive test, so I've booked in for April 14th which feels like a lifetime away! Just going to try and focus on one milestone at a time.

Yes I'm on aspirin too, I've been on that since January as they recommended starting that before I fell pregnant.

Oh my god I've just used one this morning then sat down to work and it's been a bit messy 😂 how long do you lie down for? I think I need to change my approach!

Hi @PolarBear63 I'm so sorry for you losses, it really is such a difficult thing to navigate through. Where are you based? I'm in the North East and I went to see a consultant at the Nuffield hospital in Teesside. I posted on here to find recommendations too as most posts I found were only talking about consultants based in and around London. I tried my GP first as some people do have some luck getting some tests done with them. Mine said no, but it could be worth a try x

Thank you both so much. It is just such an awful thing and I cannot believe women are just expected to go through it 3 times before anything is even offered to you. I’m based in the North West, but there seems to be a bit of a lack of private services here from what I can find on Google.

I will consider asking my GP but part of the appeal of private for me is having someone a bit more sensitive and understanding. Even if it is just because they want my money!

I know it's awful isn't it. I was so upset when I spoke to my GP about it all. I'd definitely recommend looking to see if the Nuffields in the North West have a specialist, they got me in pretty quickly to the one in the North East and I had my test results back in a few days. Hope you manage to get something booked in, keep us posted xx

@KB86 I know it’s their daily existence but they’re so lacking in compassion with it. I think there are some Nuffields near me. Will it be obvious if I have a look on the website? I’m finding it a bit hidden away on most things I look at where the focus is IVF or just general gynaecology.

@polarbear,mine was at a nuffield too. You could call the outpatient department and ask which dr specialises in recurrant miscarriage, that's what i did, i struggled finding a useful profile online!!

@KB86 i knooow it seems like ages in between scans but the 14th will be here in no time. I recommend a book called pregnancy after loss by zoey Coates!! Re pessaries, ive got very severe morning sickness (aka all say vomiting) so am signed off work, which means i tend to lie at least an hr nefore getting up. This probably wouldn't worktforme though if i was at work. Maybe you could set an alarm for earlier and pop it in and snooze? I know the mess is pretty grim at times even if waiting awhile before getting up 😂😭

I know what you mean, people don't really advertise it as a service do they. I just called customer services and explained the situation and they sorted the appointment out for me with the right consultant xx

@Skattycatty123 I have the book I've found her stuff really helpful!

Ah no, sorry to hear you've been so sick. My morning sickness doesn't seem to be as bad this time so far. I'm working from home so I think I'll maybe try dialling into my morning meeting lying down (luckily I don't have the camera on!!)

Just had my 2nd jab and it wasn't as bad tonight. Made my other half do a countdown of how long I has left with it in 😂