Miscarriage 6 and the most fed up I have been

(15 Posts)
Lancashire21 Mon 05-Aug-13 10:32:47

Dear All, Can I join? Just back from EPU. Miscarriage number 6 at 6/7 weeks. This time had taken progesterone, aspirin etc. No children. Am now going to be referred to Liverpool so googling that like mad. Running out of time now and so fed up (angry even). To be told it's age (am 40) and bad luck is not enough. Was miscarrying at 35 and 36 and 37 etc. If something else healthwise happened to you 6 times it couldn't be dismissed as 'bad luck'. Am ranting, sorry.

Bakingtins Mon 05-Aug-13 18:51:45

I'm sorry Lancashire that is beyond awful. flowers I've had 4MC, most recently on progesterone/aspirin/folic acid, and trying to decide if I can bear to put myself in the firing line for no 5. There is a lovely thread here for recurrent miscarriers, do come and join us. I take it you've already had the standard tests? I've recently had some progress after seeing Prof Quenby at Coventry, who is researching abnormal endometrial development as a cause of early miscarriage and also NK cells. She runs an implantation clinic for women who have had either recurrent miscarriage or recurrent IVF failure. I have a feeling she used to be at Liverpool but not sure whether she still practises there or not.
I really hate the 'bad luck' spiel. MC1 is 'bad luck', 2 is 'v bad luck', 3 'extremely bad luck, by 4 they have run out of 'bad lucks' but still no answers other than 'keep trying'. I had no answer from the standard investigations but karyotyping showed I am losing normal babies, so don't be fobbed off with the 'it's your age, dodgy eggs' argument (I'm 38, got that one too).
Do come and join the RMC thread - you get to a stage where there is nobody IRL who has shared your experience, it is lonely on your own.

Lancashire21 Mon 05-Aug-13 19:07:25

Thank you, and I'm very sorry about your losses. I completely understand the feeling 'should we even try again'. We're having much the same thoughts & conversations. I've had all the standard tests but none relating to NK cells so far. Perhaps I will get that at Liverpool? I hope so. Am going to join the RMC group - thank you. It will be good to hear about other women who don't accept the bad luck nonsense. It makes me sad & MAD depending on how bonkers I am feeling.

Bakingtins Mon 05-Aug-13 19:17:06

I was told by RMC clinic in Bristol that nobody is currently doing investigations into NK cells on the NHS. The doctor said that at the moment it's controversial and the next 10 years will tell whether it's significant or not. I don't have 10 yrs.
It is probably worth finding out what you will be offered at Liverpool. I had seen a local consultant privately after MC3 (wasn't 3 in a row so didn't qualify under NHS) but GP did most of the blood tests for me. After MC 4 I was referred on the NHS to local RMC clinic and it was a complete waste of time because I'd had the tests already and they basically said they couldn't help me other than offering TLC/scans in my next pregnancy.
There's a thread called TTC on prednisolone on the conception board that has a lot of women who have been diagnosed with high NK cells, and they recommended the book 'is your body baby friendly'. It's not exactly an easy read though!
As far as I'm aware there are a couple of people in London (Dr Shehata and another whose name escapes me) and Prof Quenby and Prof Brosens in Coventry, working on NK cells, and that's it.

Lancashire21 Thu 08-Aug-13 09:41:19

Hello Bakingtins, Thanks for the info - it's so useful as I'm not sure what I would get at Liverpool that I haven't got from my consultant more locally. Partly I feel I want to do SOMETHING. I just cannot accept that 6 losses is chance. Wishing you lots of luck with your investigations. Thanks again

Pawprint Thu 08-Aug-13 10:15:22

So sorry to hear that. I had four miscarriages before my son was born.

All losses were first trimester and tests came back negative for underlying causes.

I hope you get some answers soon.

Bakingtins Thu 08-Aug-13 11:20:55

Dr Q's contact details if you want them. I have a PDF which has more information about the implantation clinic, if you PM me your email I will send it to you, or her secretary Kerri is v helpful and would send it out to you.
There are a few people on the RMC thread who have good things to say about Liverpool, but I'm not sure what they are offering in addition to the standard work-up.

Lancashire21 Fri 16-Aug-13 13:57:03

bakingtins - huge thanks - really kind.

Irishmammybread Fri 16-Aug-13 20:18:14

So sorry to hear of your losses Lancashire ,miscarrying is the most heartbreaking experience to have to go through.
I've had 4 miscarriages since March 2012 ranging from 5.5 to 12 weeks but I'm 45 so have been told I'm not eligible for any investigation or testing.
I'm very aware I'm very lucky to have three older DC already though it still doesn't stop me missing the little ones I lost.
I just wanted to say, 40 isn't that old, I know you're on the RMC thread but if you want to be on more than one thread there is a lot of support on the "fecund forties" thread on the Conception page too,several ladies in their 40's are pregnant,a lot of people have experienced pregnancy loss along the way.
I still hang around on it (even though I'm not officially ttc any more, DH thinks it's time we stopped trying) there's lots of support from a really nice bunch of people!

willitbe Sat 24-Aug-13 08:55:34

I can empathise with your frustration of the "age" and "bad luck" responses. I was in a slightly different situation in that I had had previous successful pregnancies. But by the time I got to 6 miscarriages I found going privately for investigations helpful emotionally. I felt like I was doing something about it. After that I was offered counselling and although I did not expect it to be helpful, it was great at dealing with all the compounded grief of the previous pregnancy losses.

I unfortunately cannot offer much in the way of hope as we stopped ttc after 12 losses. They were all first trimester losses, the progesterone only made them last longer so miscarrying at 11 weeks rather than earlier.

Have you had all the possible tests on the NHS in terms of keryotyping, and all the other blood tests? I assume you have.

If so then go privately to dr rai in st Mary's or one of the others as previous posters have suggested. St Mary's offer the TEG blood clotting test that is worth getting done. The others offer the auto immune tests.

I felt that by checking everything out that at least I was not missing anything obvious. I now do accept that it is my age that lead to the miscarriages, but it took me a long time to stop hunting for the one golden egg amongst all the others. It took a huge toll on me physically as well as emotionally. With all the different medications I tried.

I wish I could tell you that it will all come right in the end, but I can say don't give up until or unless you choose to, as there always could be that miracle waiting for you, there are women who do have a baby after recurrent miscarriage, and many who conceive in there 40's. You sound like you are determined to beat the odds and I truly hope you do.

Lancashire21 Fri 30-Aug-13 09:56:22

Back from working away (a pain but being busy seems to help). I wanted to say thank you for your thoughtful words. I feel less alone. I have such empathy with everyone's losses x

willitbe - yes, have had all that the NHS seems to test for. Am off to Liverpool just to see if there is anything else - though I do doubt that.

I have some questions which I will be repeating to them @ Liverpool. I ovulate on my own yet have been given clomid (resulted in 3 pregnancy positives - all miscarried at 6-6.5 weeks). I have been given progesterone. Aspirin etc. But it feels this has been chucked at me as a 'we don't know, it might not hurt' rather than systematically. I have read the Lesley Regan book which is fairly clear that as a 40 year old woman who does ovulate clomid should not be prescribed, nor progesterone.

So bloody confusing as well as upsetting & exhausting. Took me 2 goes to understand the Regan book! (pea brain)

Bakingtins Fri 30-Aug-13 14:28:51

Did you have problems getting a BFP before the clomid? Not familiar with it being used for miscarriage.
I had all the "can't hurt" treatments (aspirin, progesterone, folic acid) in last unsuccessful pregnancy. Prof Q was v sniffy about them, said progesterone is useful in a subset of women where the endometrium does not grow properly but needs to be given from day 21, from a BFP is too late. It seems from my biopsy that's not the case for me. She said no aspirin unless there is a diagnosed clotting problem and didn't seem to have strong feelings either way about folic acid. I've been diagnosed with high uterine NK cells so it's steroids for me if we try again.
I think they must feel a bit desperate to do something that might help when faced with RMC and normal results. There are so many people who do seem to succeed after multiple MC without a diagnosed cause or an effective treatment, makes it difficult to assess what is really working.

Zumbasmyfave Sat 31-Aug-13 18:38:33

I'm so sorry Lancashire. It's not fair, I feel angry for you too. I hope things get better for you soon xxx

Lancashire21 Fri 06-Sep-13 15:37:16

Thank you zumba - appreciate that x

Bakingtins - thanks again. I got BFPs before taking anything. I don't get why I have been given clomid for miscarriage either. I do suspect it's the 'we don't have a clue here's something...' Whilst I can see why this is done, when the results seem normal, but this approach surely can't help build the evidence base which could help other women? I am incredibly interested what you say re Prof Q

Am not taking anything now. Am certainly not having another round of clomid. Am trying to eat well and get out on my bike. And we're having a holiday to take our minds off it.

Have spent time today chasing my GP and consultant for my Liverpool appointment which has not come through yet. Hopefully it will when I get back from hols.

Take care of yourself x

Bakingtins Sat 07-Sep-13 08:14:25

I've had a phone consult with prof Q now and her advice was progesterone from day 21 of cycle, continue if BFP. Prednisolone ( for high NK cells) from BFP. Clexane once pregnancy confirmed to be in the uterus, it has a cytoprotective effect on the placenta independent of use for clotting problems which I don't have. No aspirin, it can interfere with preparation of the womb lining. The difference with her is she has actually diagnosed a problem and is using these things from at least some evidence base as part of her ongoing research. She's quite up front that there are no guarantees, but I trust her enough to give it another shot.
Hope you have a great holiday, I think some time out concentrating on you feeling mentally and physically well is a good idea. Hope your appointment comes through soon.

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