Recurrent Miscarriage Support - tests, treatment, trying again - thread 11

[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?

Charlie Pcos diagnosis is very odd. Apparently you can have the cysts and not the syndrome and vice versa. None of my mc scans picked it up but Mr Rai at St Mary's thinks I probably have it based on my cycle length and random positive opks at weird times of the month. Then my scan at St Mary's showed both ovaries were polycystic but the Dr said that is normal for the early part of your cycle, before one egg becomes dominant. So I have no idea but that is why I want my hormones testing, as it's that that causes the problems, not the cysts themselves xx

charlie they picked up my dermoid ovarian cyst on a scan during my last MMC. He is 3.5cm in size, so not huge. I would have thought that your ovaries would be examined during routine scans.

Charlie - sorry you are feeling low. I think back always to my first mc - as I was most naive then and already thinking about future. It was do sudden the bleeding that it really hit me. After that I always assumed it wouldn't work out, to save myself the disappointment.

Regarding pcos - I am in a similar state as you. So I have never been formally diagnosed with pcos from scans and trust me I have had PLENTY. But based on my TEG mr rai thought I had pcos. My amh was also high and then my LH relative to FSH was high. Normally LH should be half of FSH. Finally I have also had long and random cycles, hirsutism, acne, but on the skinnier side in terms of weight. I have only started gaining weight after mc3 - indulgence eating !!

I have been given metformin for this "potential" pcos even though I didn't test positive on the fasting test. So I probably need to re-evaluate if I should continue taking met.

Charlie big hugs. Early on it sometimes feels like the pain will never go away, and the need to know why it happened is intense. Even after 5 I'm no closer to knowing, but it hasn't stopped me speculating/guessing/second guessing.

Be kind to yourself, and take some time to heal. You will get there in the end, and you may never know why it worked or didn't.

My consultant said he's still completely baffled by RMC, and says he thinks we will never know why it happens to some women

And on the pcos thing, I only get simple cysts from ovulating, so I have no knowledge in this area.

Thinking of you x

Hi all, popping my head up as just had a positive test after 2 mcs and one med term. I was tested and they found low th so I am on thyroxine. I haven't had anything beyond standard tests. Should I be thinking about booking an appointment in coventry or with prof regan? What would they be able to look for now I am upduffed? I think this might be the last go for me, so thinking I should throw the kitchen sink at it.

So sorry to hear about others losses. That little line has brought the hope and all the pain and sadness back with it. I think I have been postponing feeling it all until I know if I will ever have a child. Now knowing that is closer, the emotions are creeping up. Going to be a bumpy ride.

Hello aoife. Congratulations. I am happy for you, though understand your trepidation entirely. I was told that if I get pregnant I should phone st Mary's, where I have been having my tests, and they will do another teg test and regular scans but no treatment unless the PROMISE trial publishes before then and shows a benefit to progesterone supplements. It is very scary but apparently even the extra care and attention improves outcomes so you should definitely try and get some advice from
your rmc. Not sure about coventry. Their tests can only be done while not pregnant though a couple of women on this thread who were being tested were prescribed thingd just in case when they got pregnant while awaiting results. Good luck. We will be here cheering you on.

Hi ladies
Thanks for all your comments - I didn't mean to sound quite so despondent, it's more the combination of fear of another pregnancy now I've had AF and lingering sadness and questions about the others. I talked to mum the other day (she has had no mcs) but she mentioned that she was speaking to my aunt who had in her words "loads" of MCs and asked my aunt when I would get over it (not in so many words, you know what I mean) and my aunt's response was "never". I think that's true. Our babies will always have a place in our hearts. I bought a ring after the first and wear it every day, which helps me feel like I have kept the little one close to me. I have been tossing up buying one for the 2nd as if it keeps happening I don't want to have rings all up my finger! but I really feel the need to mark it, so I think I probably will buy another.

Re the PCOS I've never really had any symptoms so I don't think that's the answer and if I'm correct it more impacts actually getting preg than staying preg? Both MCs they've scanned the ovaries and on the second there was a corpus lutem so thanks for pointing that out boozle. I'm going in to see my GP in 10 days for the chromosome test results so I might ask her if there's any testing she can do even though I'm not waiting TTC. I had the thyroid one as part of TABLET and that came back normal so that's not an issue for me.

My mental state is about 1000% better this week, I've just got back from a lovely long meditative walk through the park. We're very lucky in London to have so many great public spaces, I really find walking round so uplifting - you see all kinds of people getting on, just enjoying themselves, no arguments, no fights. I often think how lucky we are to live here. You Brits do public spaces well!

aoife congrats on the little line, I think we can all appreciate the turmoil of emotions you must be going through at the moment. Good luck xx

charlie. Glad you're feeling a bit better.

You're right that pcos normally results in difficulties conceiving but prof regan says it is all connected- failure to implant leading to failure to conceive, and failure to implant properly leading to early miscarriage. But you're right, it doesn't seem to fit quite so well with your ease conceiving and the fact one of yours mcs wasn't quite so early. I hope your diagnosis turns out to be bad luck and you go on and have your sticky bean straight away.

Gah, stressful week. Dd settling in at nursery which has been ok except for toilet accidents which are stressing me out as they called me in to deal with it and I can't have them doibg that all time. Started a thread asking for advice and everyone's piled in to say how shit the nursery is and I should change it which I guess is supportive in a way but has made me feel worse and question all my parenting decisions.

congrats aoife hope this one goes well. You def need to be not-pregnant for Coventry because the tests are done on a uterine biopsy, you could have blood tests for NK cells ( AFAIK all clinics offering this are in London) but I suspect by the time you could organise it it would be too late, they normally start treatment from ovulation. I would cross everything and go with the treatments you have so far. crossing all available appendages for you, keep in touch!

charlie glad you are feeling a bit better. I don't think you will ever get over it, RMC changes you as a person and the lost babies can't and shouldn't be completely forgotten, but it does get an awful lot easier when you are not in the thick of it any more.

Aoife - that is excellent news, having everything crossed for you that it's going to be a healthy and boringly uneventful pregnancy!

Charlie - I also think that you never get 'over' a mc - just like you never get 'over' someone you love dying. The grief will stay forever, but you develop coping mechanisms over time that will enable you to get on with and enjoy life. No one knows how long that takes, and it's different for everyone, so don't beat yourself up (and don't listen to your mother).

Hi ladies, I've come to join you as I've sadly suffered my second miscarriage in four months this week. Both happened at 6 weeks but delayed miscarriage with the first being picked up in private scan at 9 weeks (nhs refused) and this week at 11 weeks after bleeding. Again nhs initially refused to scan as had heart beat at 6 week scan but I insisted, so in the end they agreed.

I already have a 3 year child and no history of miscarriages until we started for a sibling, so this has left me very confused. Know nhs won't test until three miscarriages however as will be 37 in November I'm keen to have another attempt soon (must be mad) I wondered if anyone had similar experience to me and if anyone knows if there are any private tests I can get done to see if there is an under lying cause or not? Thanks in advance x

Hi girlie sorry you are having such a crappy time. You can see someone privately to investigate at any stage. A good starting point is to google the recurrent miscarriage clinic at your local hospital, often the consultants will do some private work for Bupa/ Spire etc. If you are within reach of London you can go to St Mary's as a private patient (centre of excellence for RMC)
Think carefully though, it will be about £200 just for a consultation. There is a pretty standard set of tests (mainly blood tests plus a scan) and after 3MC that finds a cause 50% of the time, presumably less than 50% after 2, because there is a higher chance that you have truly been unlucky. If the NHS tests don't show anything several of us have been to Coventry for the implantation clinic which looks for problems with the uterine lining.
I saw a consultant after MC3 but not 3-in-a-row, she ordered tests which my GP was happy to run, even so we spent c£750 and nothing was found. I had a further MC and then was told I'd had all the tests and the NHS RMC clinic couldn't help me beyond support/ scans in a future pregnancy. Embryo from that pregnancy was tested as normal so I went to Coventry (another £360) and was diagnosed with high NK cells. Appropriately treated my next pregnancy was successful
I had my first child, now 7, with no problems, a MC in 2009, then a dodgy but successful pregnancy with my second child in 2010, then 3 MC between Sept12-June13. many of us have had children then run into problems trying for a sibling.

We're running out of thread! I'll start another....

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Hi everyone I hope you don't mind if I join this thread. Iam in need of support and advice.
I'm 44 next week and have TTC for 5 years and have had 10 miscarriages.. I have an under active thyroid, blood clotting when pregnant, v high NK cells and now high TNF alpha.
All my miscarriages have been within the first 10 weeks.
I am at the end of my tether and don't know what to do I'm not getting any younger I have tried treatment of Steriods, fragmin, hydrocloxocloroquine, aspirin, I had intreplids on one pregnancy as well and now I have just don't two Humera injections only to get the results back as they are gone up and not down. My endocrinologist is concern about humera and the thyroid causing Hughes disease in the future..
I just don't know what to do. My husband says I should stop and not take the next two humera injections but to name that means giving up..
Has anyone got any experiences similar.
Thankyou