Recurrent Miscarriage Support Thread 26 - tests, treatment and trying again

[bythesea82]

Tea, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so hold on to your hats!
Previous thread here

It is hard ... I have a dear friend near by who suffered 1 MC and my sister in law who also suffered 2 MC so I have some support of people that know ... it's the whole MC but still no bundle of joy that's hard and not something you bring up in day to day conversation. Work has no idea and my folks have no idea of the 4th MC as a comment about my age was made.

41 is generally seen as old for TTC isn't it.

Welcome chryst and sorry to hear your story. Sounds like you've really been through the mill. This bunch of ladies have been ,and continue to be, a life line for me. I hope you find the thread just a helpful. I don't think you should give up unless you're finding it too much. This does take a toll emotionally and physically and it's a decision only you can make but i don't think you should give up based solely on your age.
The nhs don't test for nk cells but as someone else mentioned, you can self refer to Coventry for 360 quid, which is an nhs self funded clinic (although under the name of Warwick university). I think it would probably be worth a trip if you are finding you get pg very easily but lose them, as this is part of what they think is going on with a subset of women (hyperfertility). Coventry test for uterine nk via an endometrial biopsy (the scratch), which also benefits the lining for 3 months. Some private clinics test for blood nk cells. There are differing theories on which is a better test. I would say that blood nk comes back abnormal more of the time (this is just anecdotally from on here). So perhaps it is a more stringent test? I don't know.

I'm not sure why they are saying ivf unless they intend to screen the embryos before putting them back or intend to use donor eggs (both v expensive i believe). If you don't intend to do either of those things and you're not having trouble conceiving then I'm not sure ivf will help (and is a lot to put yourself through for no improvement in success rates). But maybe you can take some advice on this. I'm only speaking from the point of view of having asked my doc about whether it would help me, but your circumstances might be different.
Big hugs for the difficult time you're going through x

Enjoy the meet up Yorkshire ladies!!

I'm definitely up for a Bucks meet up - works well for me as only an hour as I'm right at top of M40 and I can see my Mum and Dad too

Wendover is lovely or Weston Turville, and so is the Bell at Aston Clinton - we went there for my Mum's birthday. The Bugle Horn in Aylesbury on the Oxford Road is also not bad.

I miss home!!!!

Hello Chrystley - so sorry you find yourself here. It's so hard. I'm nearly 39 and DP is 46 and I've had 3 mc's although I'm now pregnant for 4th time. I defo recommend going to Coventry

I must admit when I've been going through my mc's I've been relieved that I've not had to worry about anyone else other than myself but then of course the thought of "what if it's not going to happen" is always in my mind

That should have read that uterine nk testing is perhaps a more stringent test

Sebs, a good friend of mine had an early scan because all of her symptoms stopped. She'd previously had two miscarriages and despite symptoms stopping she went on to have a healthy baby. Maybe the sonographer asked about spotting because you were in for an early scan.

Can totally understand wanting to protect yourself but I'm hopeful for you.

OneStep, have you had your thyroid checked? Although assume you probably have. But I find it hard to lose weight and have under active thyroid.
And thyroid antibodies can cause miscarriage.

Biscuits thank you . She didn't have any information about this pregnancy I don't think as never asked to see my green notes, so I'm hoping all the questions were because she wasn't sure where I was supposed to be in the pregnancy. Anyway I think the litmus test is basically next Friday and measuring the growth against yesterday's. I feel breathless just thinking about it so it's easier to just think the worst and hope for the best.

I think there are some ladies near me in Cambridgeshire. Cloud for one but I think there were two more who's names escape me. I would be up for a meet definitely

Sorry but can I run this past those of you that have suffered an ectopic. Yesterday morning I sat up in bed and had a shooting pain right up my bum and through the middle of my body. I managed a small bm but nothing substantial, the pain didn't shift all day, mentioned it to Dr on phone at JR and also Prof Quenby but no one seemed to batter an eye at it. This morning had a better bm and yet I still have this shooting pain when I sit down on my bottom.

My dh (I feel so guilty for shouting at him last night) he is wonderful, has googled his fingers off and apparently it's quite common in an ectopic some have a pain in the side but some also suffer this shooting pain straight up the bum and then sometimes straight up their spines.
My husband has googled a lot of things and 9 times out of 10 has been absolutely spot on so I trust him completely.

Brummie wonderful, yes I know all of those places any are absolutely fine with me. Happy to go with wherever you and Just feel most comfortable with.

Welcome Chryst this is an amazing place to be, hope you can find some help here.

Just checking in after massive catch up - took me about an hour to read up to this spot! Have been deep in GCSE marking hell this week trying to meet deadline.

cat huge congratulations, hope you are both doing well

sebs hope that your next scan brings good news or at least more certainty.

March a bit behind the times here, but so sorry to hear it didn't work out for you this time. Think I read a few pages back that you are arranging counselling - hope you find it helpful.

Brummie sorry to hear that you're feeling a little low at the moment. It's so understandable after everything you've been through. Do anything you can to make it easier on yourself where you can.

onestep so sorry to hear your news. Look after yourself in the next few days, i totally understand the feeling of wanting to take some time to yourself for a while.

Definitely up for a meeting of the Bucks contingent - love all the pubs you just mentioned Brummie, the Bugle Horn is a favourite after work hangout for us at school! Wendover is lovely too - am a fan of Rumseys chocolate shop in particular, well worth a visit any time!

Biscuits thanks, yes I've had my thyroid tested a couple of times, all normal. I think it's stress related, I'm a terrible terrible stress head, have mastered hiding it when I need to, but when I get home it all comes out and my dh often suffers the brunt of it.

onestep the shooting pain you described sounds like something I sometimes experience before AF and occasionally ovulation strangely. However, mine lasts only a few seconds then completely subsides so I would say that if it continues, it's definitely worth getting checked out.

Also may, I think it was you speculating about a genetic link to infertility and miscarriage - I defintely agree with this. My mum had ten years of infertility and at least two miscarriages between my brother and I and more recently my cousin could not conceived until she was given clomid and went on to have three miscarriages on it. Can't get a doctor to agree with me though and I had hoped this family history would allow me to have rmc tests even though I've only had two miscarriages.

Bootles* and brummie* thanks for your comments, i usually drown out the fear with all our other more productive ttc/mc parafanalia, which is mentally consumin (and basically covering my ears with my hands and singing).

Cat - on bf, i add to what inamay* and minnie* have said already, it is a beautiful thing, but it can be sooo hard at first and you are still very early on. If it happens its wonderful, but if not that is completly fine too. Don't allow your hormonal emotions to be pulled and tattered between the two, its no big deal. My ds had a toungue tie also which was cut at 2 weeks and bf was not at all plain sailing for us either! Xxx

onestep that stabbing pain up your bin can definitely be stress related. I had it once in my twenties, went to the GP as it was SO painful and she said it was basically a muscle spasm caused by stress and have me some anti spasmodic medication. My Mum gets it regularly and has to have a hot bath and take anti inflammatories. I was also incredibly scared of ectopic when I was having my second MC that went nowhere. The doctors didn't seem to give a shit, I'm not sure why. I think the key things to look out for are shoulder tip pain and discharge similar to grape juice in colour.

Cat breast feeding is something that can be so horribly painful at first but once you get over that first hump it can then be extremely easy. I have no idea why it has to be so difficult initially though!!

I dealt with it by attending all my local breast feeding groups locally for a couple of months. I just used to plonk myself down and cry lol. I was so worried about DS as he was dropping down the centiles and I was convinced I was doing everything wrong. They gave me confidence and eventually everything fell into place.

At one point I had lanolin smeared over my nipples, then cabbage leaves over the top and a breast pad over the top of that lol. I was a mess!!

Sebs, I'm Cambs. And there's at least one more person but name escapes me!

Freckle, I second feeling the fear and doing it anyway. I also try to see myself 20 years in the future and imagine what will be worse then, regretting not trying again, or having tried again unsuccessfully. At the moment my fear of looking back and regretting not trying trumps current fear of TTC.

And Hotel Chocolat, well jel!!

There is a Hotel Chocolat in Huntingdon

Welcome chrystley I'm sorry for all you've been through, but glad you found us. There are a lot of us who are 40 or thereabouts. Obviously being older doesn't help at all, but I think we are fobbed off far too often with the 'it's your age' thing. The overall MC rate at 40 ish is about 30%, it doesn't explain several losses in a row, and it's not that likely they are all chromosomal problems. It took me until my 4th loss to get genetic testing which was normal, and I then got a high NK cells diagnosis from Coventry and had my DD on their protocol. You need to be at least 2 cycles post MC for their testing so I suggest a few months to regroup and decide what you want to do. We were at the point of giving up if they had not offered us some hope. Many of the women they test have normal NK cells but there has been a lot of success on the thread on their protocol of progesterone from CD21 to improve lining selectivity/receptivity and heparin to protect the developing placental cells. If you have high NK cells you take steroids in first trimester as well.

onestep I don't remember any actual pain with my ectopics, but I did get a feeling of pressure and heaviness in my pelvic floor which was noticeable when going to the loo. I think if you get any pain that continues and is a 6 or more out of 10, you should go to the hospital and get checked out.

Re genetic link to infertility and miscarriage - in my case I am convinced subfertility, MC and my ectopics are down to my DH! I come from a huge family, where noone (in current living generations) has ever lost a pregnancy except for me. My DH's dad is an only child, so I wonder what went on there - his family are catholic and birth control was not all that in the 1950s! His mother (one of 7 kids, and again from a very fertile family) had an ectopic pregnancy and his brother has only one child. My theory is there is something that goes down the male line, that you can't see when you only look at motility etc. i think there is too much focus on the woman in these situations and they should study those swimmers a little harder! For example, might some men produce dud swimmers that are chemically capable of penetrating the egg? There was, incidentally, a study into whether ectopic rates were higher where ther was a male factor, and it couldn't prove anything, but the fact that there was even a study makes me think I'm onto something!

I've just had a catch up and as I start writing, realise I've already forgotten who said what. So sorry if some comments are general rather than specific...

Sebs those results sound spot on. You might have had a sonographer having a bad day. I know how the self preservation thing goes, so I'm not at all surprised you're feeling so negative, but take comfort in the fact that some of the best negative thinkers in the country are hopeful for you!

Cat, lovely, it is so fucking hard to bf in the early days, isn't it? It's amazing our species survived at all as there were times when I really really wanted to jack it all in. Latching on a hungry baby to bleeding nipples and crying through the whole thing in a hormonal mess was my experience... You are at the worst point, and it does get better. I saw a private lactation consultant who was a gazillion times better than my mw at getting us working well, and someone I know got in touch with her local la leche league group on fb to explain her problems and get advice. Within an hour, on a Sunday, someone had arrived to help her in person. It is an entirely personal decision to persist or call it a day, and absolutely no judgement from me about any choices you make. Just lots of hugs to you both.

Welcome newbies. This is a lovely supportive group.

41 is not too old. I had DS3 after 5 consecutive MCs at the age of 42.

I really have forgotten everything I was going to say and it's taken me an age to get this far!

As for me, it's been a mixed bag. DH and I had a good chat on Wednesday then a full blown row on Thursday. Since then it's been walking on eggshells. Everything remains hard work and stressful but some extra sleep this morning has helped a bit. I also had a coil fitted yesterday which has unexpectedly had me in floods of tears. The realisation that this is it, no more kids, has made me incredibly sad. This is totally daft because I'm a total stress head now and can't have any more for practical and financial reasons, but the emotions are still there. Twonk.

Enjoy meet ups today! Baking, Jady and I had a mini meet and it was lovely. Maybe we could have a SW and S Wales meet up in the Newport area or something?

cat sorry to hear you are struggling with BF Louis. It is really common to struggle to start with and most problems can be sorted out with the right help. It feels totally overwhelming in the wee small hours to have a screamy little person depending on you. Are you still seeing your midwife? I'd phone them and ask for help first, but if they don't have time to sit and help you, or if you are not finding their advice helpful, ask someone else. The NCT or La Leche League may have a local BF counsellor, if you phone the National breastfeeding helpline on 0300 100 0212 they should be able to advise on what's available locally. I've been so lucky to have a wonderful NCT counsellor near me who runs a weekly support group - I doubt I'd have continued with my first baby without her help, and in fact with both subsequent DCs it hasn't been plain sailing initially and I've needed her advice. I'm a peer supporter and I'm very happy to try and help if you want to PM me, or we can speak on the phone, but there really isn't any substitute for someone actually there beside you that can see what is happening during a feed.

Bloods no.3 now done at JR. All depends what results are tomorrow... Nurse said they will be discussed with a consultant now. Just to confirm, hcg levels have to reach 1500 before they can see anything on a scan.

Enjoy your meet ups today ladies. X

Spartacus I think I agree too. My family; my mum and dad both 1 of 9 children, all first cousins have had lots and lots of healthy pregnancies and children, no history of mc. On my dh side their have been ectopic a and mc galore!!!!

Also have a similar story. DP's parents couldn't have children even though they were teenage sweethearts and married in their early twenties. At 37 there was a miraculous pregnancy that resulted in DP.

There are also neurological diseases that run down their side very strongly. DP has MS, his Dad has Parkinsons, his uncle had Alzheimers. It worries me very much but apparently those conditions are not hereditary. I'm not convinced at all.