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?

Thank you for the welcome. I'm still really struggling with my emotions so finding thinking about the future (in a positive light) tricky. I half want to start trying as soon as possible but at the same time think it might be a good idea to wait for the outcome of the tests.

Can anyone tell me what your experience of the RMC is? Is it literally just some blood tests or do they assist you during future (hopefully) pregnancies?

I had the standard NHS blood testing done mostly by my GP after paying to see a consultant privately after my 3rd (but not 3 in a row) miscarriage, so by the time I got to RMC unit after a 4th miscarriage they had nothing to offer me except support in a new pregnancy (early scans etc) I went private again for immune testing which got me a diagnosis, and I have to say RMC have been very good in this pregnancy, they scanned me 5 times in first trimester and were very supportive.
You should also be getting a blood test for you partner as they should be checking karyotypes for both of you to make sure neither of you carry any genetic defects you might be passing on. Most of the testing is just blood tests, and they will probably want to do a scan to make sure there are no issues with your ovaries or womb. If you have the opportunity to request testing on any material removed in the ERPC this can be very useful information, if the embryo was normal it's more likely to be an issue with you than the 'bad luck' that is always bandied about. If the embryo had some sort of genetic defect again it's v useful to know if it is a spontaneous mutation arising by chance or something that one of you carries, in which case you'll be offered genetic counselling.
It's worth bearing in mind that only 50% of women get a diagnosis from the standard NHS tests even after 3 consecutive miscarriages. It can be hard to be in the "unknown cause" group, even though statistically you have a better chance of a good outcome in this group. Easier to cope if you are given a reason for the previous miscarriages and an action plan for any future pregnancy, even if that is only improving your chances and no guarantee of success.

I had nhs tests at St Marys, they found a "sticky blood" condition (which they specialise in). They sent care advice to my GP which is now on my record. St Mary's have been very supportive since I got pregnant, they scan me every few weeks and check how my meds are working. They say with the meds every pregnancy has a 65-79% success chance which although high risk is firmly over 50/50 odds.

As Baking says genetic testing is useful - I had a "random" genetic loss and it was reassuring to hear it wasn't a recurring genetic issue, and have closure on that loss. But without the clinic tests, the NHS docs may have assumed my 3 losses were bad luck/random, so having both was so valuable.

I have had two mcs but as both occurred in the 2nd trimester I had the usual tests. My consultant identified factor v Leiden (blood clotting disorder) so I took heparin injections during my third pregnancy. This also resulted in a loss. My consultant re-ran the usual tests and found nothing new. Later in the year, wanting to leave no stone unturned I got a private appointment at st Mary's (goodbye savings!). After some discussion they agreed I should have a hysteroscopy which then showed I had significant cervical damage (which occurred when delivering dd). But I am so glad I went for the second opinion, otherwise I would be very likely to have had another late mc( which I dread to even think about).

The point is, I would push for all tests you can get. The miscarriage association website has very good info on all the routine and less routine tests. You could take a look there karim.

I was promised great support after my first mc (23weeks) but ended up really disappointed by the treatment I received in hospital during second mc (14weeks). Im Trying not to dwell on it now though as i just found out I am pregnant (though it's always in the back of my mind).

squiz hope you are keeping away from the mmc stories tonight!

I think we ladies on here are well due some lovely rainbow babies ths year! I'm keeping my eyes peeled for inspiring stories :-).

Thanks Tayto, no more bad dreams. Had a mini wobble when I woke up this morning feeling too well but had a poke at the old booboids and a couple of minor nausea waves since then so OK now.

...in fact I had a rather saucy dream!

Just read this in today's Daily Mail:
www.dailymail.co.uk/health/article-2546477/Taking-multivitamins-raise-risk-miscarriage-Mothers-likely-lose-baby-taking-supplements-six-weeks-conception.html

It definitely wasn't the cause of my miscarriages, unless fortified cereals could also be culprits....as I didn't and don't take any supplements except for vut D as my blood tests showed very low levels (22 when it should be 70).

I just read that too ruggle not great when I have pmt and have to go to work! Thanks daily mail

Ruggle I wouldn't worry too much ... the Daily Mail has an actual policy of 'scare stories' regarding women's health which is alarming and downright immoral. They are notorious for it (one minute vitamins cause miscarriage, the next not enough will kill you...).

... actually very angry at the DM for reporting this. Just going to cause anxiety. And lots of women don't understand % enough to interpret the risk accurately and will be terrified/guilty if they lose a pregnancy (I can, but have anxiety anyway and I bet I get nightmares and fears now!).

I went to my recurrent miscarriage appointment today. They said that because I am pregnant they can't start testing me now , which is what I expected from what you said to me in here. On the upside they scanned me all all is looking well. Am 8 weeks 2 days! Each day counts! Got another scan, midwife appointment and consultation in just over 2 weeks. Going to take it easy till then and try not to let my mind go into over drive. Although I am constantly boob checking. I know there is a few of us on here who are pregnant and am hoping 2014 is our year! Good luck to everyone. 2013 is well and truely gone!

Millys Boob checking! I just realised my style of boob checking (cheeky poke to the underside with my knuckle) makes me look like Les Dawson when he's in drag as an old lady. I also mouth "cervical mucus" or "knicker check" when I have to run to the loo when out with DH. All I need in a pinny!!!

Oh the Daily Fail strikes again. What a rag!
Glad you had a good scan, Millys.
Waves to everyone.

Boob checking- I squeeze them together from the sides (creating a fab cleavage). I have done this at work when no one is looking - god forbid I ever get caught. If they don't hurt so much, I just squeeze them harder lol

Lol, I do a little jump to see if they hurt when they move. Or take the stairs at a pace; if it hurts when they move, I'm satisfied.

Hi everyone. Looks like I am having miscarriage number 7 at just under 6 weeks. My hospital have done blood tests last week looking for various possible miscarriage reasons (i had a routine appt there) and we will get the results in a few weeks but they didn't seem to think there would be anything else they could do if those tests didn't show any cause. So I'm now looking into how we would go about going private to somewhere like st Mary's, do I just ring them up and say my case? I really don't think 7 losses is down to "bad luck" or my age (nearly 37) and want to try to get some answers asap.

So any advice how I can get seen by st Mary's asap?

Katie, I'm so sorry to hear this. Get your GP to write to and fax Yash at st Marys, she's the clinic coordinator. it will probably take a couple of months to get an appointment. In the meantime, keep anything you pass in a Tupperware and go to the best EPU near you. Walk in to the clinic at uclh if you can get there. If you have an erpc, make sure you insist on getting genetic tests done on the 'products' (sorry). This will give you lots of info that will be very useful going forward. You are entitled to tests and help, if you're not being offered them, make a fuss. The squeaky wheel gets the oil. Good luck.

squiz at the saucy dream! I have them all the time at the moment. I remember it was the same with DS and got progressively more often during later pregnancy to!

ruggle I would ignore that to. DM loves to write scare stories (particuarly on women's health I notice ) Some of the things i read on there I really can't even believe it can be passed off for journalism!

Millys I am exactly one day behind you! :) I don't boob check anymore, just the minute I take my bra off and it feels like i've been carrying three stone around all day I realise it's ok. Nausea on and off to so trying to not drive myself crazy till 12 week scan.

Katie sorry to hear about your losses, agree with Just - you're eligible on the NHS so do ask!

Downstairs reckon I'm owed some of those dreams after my recent nightmares!

Downstairs- my sickness comes and goes. My appetite is off. I tend to be sick if I eat something heavy and full of flavour. Have been eating lots of white bread and mash potato as not fancied much else.

Katie- so sorry to hear about your loss. Sending you lots of love and hugs. Please don't give up. Get as much advise from the ladies on here about hospitals and consultants near you and don't take no for an answer. Easy for me to say as I have only had 3 miscarriages. It is so hard xxx

Hi all. I've been on several threads over the years but not for a while. It's been nearly a year and a half since I was pregnant last. I had exploratory surgery at St Marys two weeks ago. I've got a flow up in March and we should get the go ahead to try again. I'm full of conflicting feelings right now. I've had six miscarriages. My first was almost 22 weeks. My last was absolutely trouble free until 16 weeks and then my cervix shortened and funnelled. I had an emergency stitch but it only held for a week. There were complications from losing her through the stitch and it's been a long haul getting to where I am now. I'm prone to UTI's which is something Professor Regan is keen to address. I'm two weeks into a 6 week course of antibiotics for an infection they noticed during surgery. I'm really hopeful but very apprehensive. I'm also feeling very lost as my husband and I leaned heavily on my Aunt and Uncle for support. They understood how we felt and never judged us for struggling with pregnancy announcements and family gatherings. My Uncle died just before Christmas after cancer took him in an extremely fast and viscous way. I miss him so much. He would have been such a major part of our little family. My Aunt is still there but I know I can't expect her to be the same person as she's mourning the loss of the love of her life. In an ideal world there would be no stress when we try again but this is far from reality.

Sorry to hear your story aMuminwaiting

Have you heard of TAC (transabdominal cerclage (I think)).

A friend of mine who had to have an emergency stitch at 18 weeks and then be on bedrest till her daughter was born, then had this done for subsequent pregnancies - basically I think they just close the cervix completely and any baby will have to be c-section, but it works...

might be worth investigating...

en.wikipedia.org/wiki/Cervical_cerclage

"An abdominal cerclage, the least common type, is permanent and involves stitching at the very top of the cervix, inside the abdomen. This is usually only done if the cervix is too short to attempt a standard cerclage, or if a vaginal cerclage has failed or is not possible. However, a few doctors (namely Dr. Arthur Haney at the University of Chicago and Dr. George Davis at the University of Medicine and Dentistry of New Jersey) are pushing for the transabdominal cerclage to replace vaginal cerclages, due to perceived better outcomes and more pregnancies carried to term"

katie so sorry to hear you are going through another loss. St Mary's accept tertiary referrals (referrals from a consultant in a relevant discipline) from across the UK, or you could go there as a private patient. I second the suggestion to try to get material from this miscarriage tested if you possibly can I had to pee through a sieve for days as it makes a big difference to discover if you are losing healthy embryos because of some problem with you or if they were lost because of genetic defects. I'd also suggest you consider getting tested for NK cells which is not generally available on the NHS, particularly if there is nothing in the tests you've had and the embryo is normal.

muminwaiting welcome to the thread. So heartbreaking to hear what you've been through. I hope St Mary's are now giving you the care you deserve. Also sorry to hear about your Uncle, sometimes it is something quite seperate that suddenly makes it all unbearable. I hope others can offer you the support you need IRL, and we are always here to listen.

milly really pleased it is going well.

So... Tested yesterday at 3:20am and seemed negative... But still didn't get AF...
Looked at the test from the bathroom bin today and looked like a faint line

Just took my extra 25mcg thyroxine just in case and will test again tomorrow...

Meep... But it could be just an evap line...