Recurrent Miscarriage Support - tests, treatment, trying again - thread 9

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

That should say ds not D's

I'm a newbie - both to the forum and this chat.

I am a recurrent miscarriage sufferer. We had 3 losses one after another in 2011 (8w, 5w and 6w) within the space of 8 months. All natural.

We had all of our tests and they came back as clear - as we were advised they would. "70% of RM remains unexplained" was the figure we were offered when we went for testing. My scans were clear as well.

We had one successful pregnancy and I have since had a 4th loss (again early and natural - 6w)

We're currently waiting to try again and I am scared. I know I have a child and I should be thankful believe me I am incredibly thankful I just worry that we've used up all of our luck.

X

butterfly wonderful news, hope that has allowed you to relax a bit.

purple glad to hear AF showed up and your HCG is back to normal. Hope your cycle is more settled from now on. Are you free to TTC or do you have to be monitored further?

dogandbeth I'd be pushing for referral to your local RMC clinic, sometimes attached to EPU, sometimes part of the gynae services at the hospital. You need some follow up to ensure the recent MC is complete, either a scan or a negative HPT. Prob worth testing before your appointment, if it is still positive they should arrange follow up for you. It wouldn't be a surprise if it's still positive at this stage, but if it is they need a plan to monitor levels (might be as simple as retesting in another week) I've only recognised 'products' in one of my four MC, and then only because I was catching stuff in a sieve Just because you didn't see anything doesn't mean they are still inside.

mamman welcome! Sorry to hear about your losses. You don't need to apologise for your child, several of us have children we are hugely grateful for, it doesn't make the losses hurt any less. I was in the same 'unexplained' category after standard testing but have been found to have high NK cells and am 24 weeks pregnant after appropriate treatment. 4 miscarriages was too many for me to accept the 'unlucky' verdict. Did you have treatment in your successful pregnancy?

Hi dogandbeth I'm in a similar position to you.
I had my 3rd miscarriage last week, I didn't think I'd passed anything, they said its likely that my body will re absorb anything that's left. I was advised by the EPAU to do a pregnancy test in 2 weeks, my HCG levels were going down according to the blood tests.

I've got a GP appointment this week to ask to be referred to the recurrent miscarriage clinic, which is held in the EPAU but they couldn't refer me!?! They (EPAU) said it would be a 4week wait, a quick search showed it's more likely to be 9weeks. What are other peoples experiences?

I think because I'm 38 and DH is 44 we fall into the most likely to be bad luck category, but I'm willing to have tests. I know that realistically I'm not that old, but it does feel like time is slipping away. Did most people stop TTC and wait for test results or just carry on?

Thanks for that baking tins will try and get a referral, and thanks for the advice re 'products' that's really reassuring. I got a negative test earlier in the week so I'm pretty sure the mc is complete.
Hi halfbaked, sorry for your losses too xx I'm the same age as you, and my dh is a similar age to yours- know what you mean about time slipping away. Was also wondering about whether to carry on ttc whilst waiting or not. Was thinking I would try this month as I believe that you can be quite fertile after an mc ( could be wrong but I think a midwife told me that.) Although not sure if I could handle an mc 2 months in a row, but guess I should be more positive. Will let you know how I get on tomorrow and I hope your appointment goes well this week.
Hi mamannat222 sorry for your losses too. It is scary to ttc again isn't it x

It's a personal decision but we took a break from TTC whilst tests were done, but we went private to see consultant so got ball rolling quite quickly. For the NK tests you had to be not pregnant anyway as it involved a uterine biopsy, and results were only a month. The test that takes ages is karyotyping for both parents, worth asking if GP can get this one underway whilst you wait for referral?
They find something in about 50% of cases, worth thinking about how you feel if they find something and you are pregnant and untreated in the meantime vs how you'd feel if you are 'unexplained' a few months down the line and have waited.

Hello everyone. I'm a former poster here and an occasional lurker.

I just wanted to update with some positive news. I am 12+2 weeks pregnant today, and fingers crossed things are looking well, though still awaiting results of combined screening.

I have stayed away from the thread as I really needed to just focus energy inwards and not imagine the worst. I am still not excited, but feeling more relaxed every day. No-one IRL knows yet. I will tell once I have the capacity for excitement.

For those who don't know my history, in case it helps, I have one DD, had 3 mcs over the space of a year. Did the usual RMC testing which was all negative. Third mc was karotyped, and was a chromosomal fault.

Then tested for NK cells at Mr. Shehata's clinic in Epsom. This was on the NHS, my GP referred me when asked to.

The results were normal level of NK cells, but abnormally high activity from them. So, I started on prednisone (steroids) for the second half of cycle, continue on prednisone and add progesterone once pregnant.

I completely empathise with everyone in here, I have gone through all the emotions. It is horrible.

I am delighted to see so many pregnancies and action on the RMC testing. The advice on here is brilliant and I would jot be where I am I think without it.

Good luck everyone. Still keeping the energy within so probably won't post for a while but sending some of the good energy your way!!

Well it's finally here. MC number 5. Spotting and pain a week after barely there pg test result and inconclusive scan.
Shitbuckets.

Not to TTC till end of march, hopefully all my tests should be done by then! Hope you are doing well baking

Great news donttry

tanny I'm so very sorry awful news, sending hugs

mamman dogandbeth halfbaked I'm so sorry for your losses

donttry that is such wonderful news! Congratulations! I'm so thrilled for you.

tanny that is indeed shitbuckets and I am so sorry. Sending you a massive hug, a family size bar of dairy milk and a large bottle of wine to commiserate.

That says all there is to say about the RMC journey, doesn't it. Such a roller coaster of emotions, sometimes all in one post. None of us deserve to have been through such a load of crap as we have, every single one of us deserves their happy ending. I wish I had remained in total innocence of what it's like to repeatedly lose pregnancies, but I am very grateful for the wonderful support I've had along the way.

oh tanny so sorry for you...

I have my scan in a couple of hours... should be 7+2 but fuck knows what will happen... this will either me chid 2 or mc 5

Tanny So so sorry you have to go through this again. It's just brutal what life throws at you sometimes. Hope that you have lots of support, look after yourself.

Donttry That is wonderful news, so glad that you could get the support that was necessary.

Tiny Good luck for today!

I have a scan on Saturday - and am not very positive at the moment... Still brown spotting, thankfully no more blood since that one episode yesterday (which means I've probably jinxed it now), I am so so scared. All my mcs started with brown spotting, so I'm currently thinking why should this be any different. The only thing that is different from last time is that I'm on progesterone, and I'm not entirely convinced that this is the answer to everything...

tanny it's total shit and I am so sorry. It's just not right that we've had to go through so much heartache. Hope you are being well looked after.

jbrd and tiny I am keeping everything crossed for your scans. In my last pregnancy I seriously asked my DH if there was a way I could be knocked out for scans - know that dread so well but I am wishing that for you it will be happy news this time.

butterfly and donttry thank you for making me smile that's really lovely news and we need to hear that!

To all of you going for testing - do push for the care you deserve. I think there are still so many doctors out there who just don't know anything about this so they should be referring you to the specialists.

purple that must be a huge relief.

Heartbeat seen and measuring 6 and half weeks she said.

Will be scanned again in a couple of weeks. Still not in the clear but further than I've been with the other miscarriages.

Don't want to get my hopes up.

Tiny that's great! Hang in there until the next one...

Tiny made me cry. So pleased it went well.

Thanks all... xx

Hey all - just checking in as haven't been on here for a bit. I am now at 10 weeks pregnant which is the furthest I have ever been in my life. I am definitely not out of the woods yet and worry myself silly constantly.

But I would just like to say that I agree with notgivingup to definitely embark on pushing for the care you deserve. I have spent a long long time convincing apparent specialists to offer me tests that I have seen others on these threads have been given. To also be referred to different care not readily available so easily.
I also want to say what a huge support this thread is and the fact that we have all been through our own heartache is in itself a comfort that we understand what each other is going through wherever we are in our stage of journey. As "baking" says, each and everyone of us fully deserves to get there in the end.

Thanks for the advice, baking. Doctor is going to refer me to hospital for testing, so need to wait for an appointment now. Shes going to see if she can get the blood tests done through the gp surgery to speed things up a bit.I have been thinking about it and I think its probably best if we stop ttc for now especially as we have the added complication of Ds being genetically tested and have just found out theres something funny showing up in his DNA but they don't know what so he's being referred to a genetics specialist. So worried for him- and the possible implications for the future...hope to know more when we've seen the paediatrician next week.

Tanny I'm so sorry for your loss x

dogandbeth that must be worrying about your DS. Hope you get some good guidance from the doctors. Maybe some time out is a good idea with everything going on but it is such a personal decision. We took some time out while tests were being done as I just needed that time to get in a better frame of mind.

I've had a bit of a day of it. I'm trying to keep going, and have an appointment for a scan and to see a consultant tomorrow.

I wonder if anyone diagnosed with clotting or APS type issues had problems with light bleeding when they miscarried, or found out that their endometrium was affected. In my last 3 MCs I've only bled for 3 days, and then only lightly. This is despite having normal healthy flows normally.

Any similar experiences anyone?

Thanks for your ongoing support. In the depths of all this I am finding the strength to keep going x

Glad you have got the ball rolling beth and hope you get good news about your son next week, it must be an anxious wait.

tanny thanks for updating, have been thinking of you. Light flow has not been my problem but it strikes me you've had a lot of losses one after the other so maybe your endometrium is thin at the moment. Can you ask for a mid cycle scan to measure thickness? Or even better go see prof Q and get an endometrial biopsy done. I think there has been some discussion on the pred thread on conception about supplements to build up lining but can't remember details, might be worth posting there too. Hope you get the help you need today.

Tanny i second what baking said.
We also decided if I miscarry again we will book to see Prof Q for further testing...

Morning. Sorry I've been quiet for a few days. Sorry you're going through it again, Tanny. :(
I don't know about light flow during mc (I've always had mmcs and then ERPCS with all the bleeding associated with that). I do have light AFs though. This one in particular has been 2 days 'normal' followed by another 4 days of very light spotting. I have been put on HRT twice over the years and the boost in oestrogen always leads to a much heavier AF. If anyone knows a way to boost AF with non-medication means, I would be interested to know.
I have been feeling quite down since the latest BFN and AF and have finally decided to seek some therapy to come to terms with some of the negative feelings (8 bereavements in 3 years including relatives, babies and pets have given me a rather negative outlook). DH and I have also decided to give ttc a break this month and see Prof Q, then enjoy the holiday at the start of April knowing I am not PG and then see how things go from there.
Waves to all.

Hello all. Haven't posted for a while. Been quite fed up. Thinking of everyone who has been having a horrendous time over the last few weeks - you're never alone. I echo what has been said about pushing and pushing for tests. x