Recurrent Miscarriage Support - tests, treatment, trying again - thread 12

[bakingtins]

Welcome everyone! A thread for anyone who has suffered recurrent losses and is in need of support, information, moral support or tea and sympathy. Newbies very welcome.

Please can we start (as is traditional) with a recap of where we are on 'the journey'.

2 weeks' time, march. What is the response trial? Not heard of that one. am all in favour of trials generally.

www.miscarriageassociation.org.uk/information/causes-tests-and-treatment/research/

Response seems to be a brand new medicine

Great news longest

I think my only reservation about being in a trial is that 50% chance you'll be given the placebo. They obv think/hope the drug they are trialling improves outcomes, since we tend to think after RMC each try is our "one last shot" I would want anything that might be beneficial thrown at it. It's weighing up the greater good against what might benefit you personally. FWIW Coventry ask if your biopsy tissue can be used in their research and I was more than happy to agree to that.

I had a bit of a moment today, burst into tears when explaining to someone why I had big age gaps in my family I'm obviously not as over it all and together as I thought.

More info on NT100 on preventmiscarriage.com

Yes I thought of that baking but on the other hand you have a 50 percent chance of being prescribed something that might help that they might otherwise refuse to prescribe.

Ps sorry you were upset today. I will have the same conversations I am sure.

I have a new boss and our introductory chat is tomorrow. Not sure if I should say anything about the pregnancy. I am having a lot of appointments at the moment and may need his support if it goes wrong but is it weird to confide in him in our first meeting?

Glass half full, longest !

Longest- fab news and remember another milestone crossed off x

Been to seen my GP today following the routine tests they ran last week. As expected they showed everything was fine, so they are now going to refer me to see a consultant which I am pleased as its more than I got at the epu clinic. Just have to wait for my referral now

Sorry Bakingtins that you've had a bad day. I'm learning it catches you at the most surprising time. Sending you big hugs x

Not a bad day really, just a caught-off-guard moment. I was just surprised by my reaction (and friend was mortified) I guess there is still some buried stuff I haven't dealt with to be squashed back down and marked deal with at unspecified future point, pull yourself together, woman

I'm not sure it will ever truly leave us. Think we're affected for life, but hoping the pain will fade.

On the whole I'm all for trials so that we can learn more and help others in future, and it would mean I get more scans etc, which would be reassuring. (And also freebie opks and hpts!), but I'm just a bit worried about taking something that's not been tested long term. Different with the progesterone as your body produces it anyway, but this is a synthetic version of something and I worry it'll be like DES, which they didn't realise was bad til years later. Hmmm. Have to do a bit more research

Yeahhh longest that is wonderful news. Not sure what to do about conversation with boss. You might want to say you are having treatment at the minute, but no mention being pregnant.

hi baking well intentioned questions can always hit the soft bits. I really struggle when my nieces ask why I don't have children. Perfectly natural thing for them to ask but I just don't know how to respond.

Great news longest You're getting safer by the day
How did your meeting with your boss go? Did you decide to tell him?

baking Don't feel bad about this, we've all been there. Sad as it sounds, I agree with March in that we are scarred for life Scars fade with time, but they will always be there... You just learn to accept them and live your life with them, until one day, looking at them doesn't startle you anymore. At least that's what I hope! It has been like this when I have lost people close to me, so I am extrapolating the experience to the miscarriages. We'll see if it works.

For now, I am bit worried whether I will ever enjoy dtd again. I have completely lost my mojo, any ideas on how to resuscitate it?! Not great if your aim is to get upduffed...

cloud this is a bit rude, but I have found a bit of foreplay with a rabbit does wonders for revving my engines.

Belle

Evening ladies, so I have a date for my first scan which will be next Thursday (30th October). I will be 5.4 wks by then. Prof Brosens says that's OK and, all being well, I'll get the heparin the same day. So far the cyclogest seems to be going well, I suppose (although I don't really have any way of knowing!). Boobs hurt and so forth, but, to be honest, sometimes I wonder whether I've imagined the whole thing; I feel surprisingly normal. I know it's early days and hopefully the 'real' symptoms should kick in in the next week or two. Feeling oddly un-panicked... Does that sound normal?

Sounds good just. You're well prepared for this moment is all. Don't worry about symptoms. Mine have been coming and going but didn't have any that early on. X

Oh apart from random vibrating labia that I have had in no other pregnancy!

Thanks, Longest, and ! This feed is all a-buzz this evening!

Hi all - thought I'd feedback on my appointment today. The consultant said she was going to refer me to a miscarriage specialist who should be able to answer my questions - so no answers today, but hopefully soon.

The doctor I'm being referred to is recommended in terms of results, but is a bit of a dragon. I'm almost dreading the appointment in a way...

Hi all, do you mind if I join this conversation? I have never been on anything like this before but feel like i need to talk to people who are/have experienced what i am going through.

I am so sorry to hear all of your stories but i think its wonderful how you all support each other on here!

Im 31 and me and my husband have been trying for a baby for over a year now. This week i had my 3rd official consecutive miscarriage within 12 months. I have actually had 4 but i didnt realise the 2nd one was a miscarriage at the time as it was so early but i had the same thing again this week.

My first miscarriage was november last year at 8 weeks, we had an early scan due to bleeding and even saw the heartbeat but the next day i lost it.

In the February i had what i thought was an extremely late period, i did a test which had a very faint line but pretty much as soon as i had done it my period started so i assumed it was wrong.

Third miscarriage was in july at 8 weeks again, it took 3 weeks to miscarry and completely messed me up mentally. I saw a private gynaecogist who advised not to do the tests as this point but to try low dosage aspirin to see if it works.

On monday i visited the doctor due to a late and painful period along with dizziness and passing out, i was sent to the hospital and blood tests confirmed low pregnancy hormones. I didn't get q chance to try the aspirin!

I have now been referred to a gynaecogist on the nhs for testing, however it is a different one to the one i saw back in july and i am concerned that they may not do all the tests that I would get if i went private. I kind of get the impression that nhs testing can be a bit hit and miss depending on what primary care trust you fall under.

Would you recommend going through the nhs or opting for private tests? Also if i have private tests am i able to opt back into the nhs for any treatment i might need should they find something?

Sorry for all of the questions i just have so much swimming around in my head at the moment and don't know what to do for the best.

Best wishes to you all x

Ps i just did a preview of this message...sorry its so long!

Welcome Dolly, sorry to hear about your losses. In my experience, the nhs testing is ok, and your GP can do many of the tests (thyroid, clotting etc.) you might get genetic kayotyping if there is reason to suspect that either you or your partner has any issues, but that isn't standard without cause. If you can get a referral to one of the main RMC clinics like st Mary's in London, push for that. I would explore all that before paying to to go private again. It shouldn't make a difference if you've been private, to get the nhs tests you are entitled to. Some advice; unless you are diagnosed with a clotting disorder, stay away from the aspirin. The latest research says it can actually do more harm than good, but some drs still say it can't hurt. It may do. Good luck.

Hi Dolly
So sorry to hear about your losses. I think you're right that the care various vastly between local authorities. Others on the board will tell you more about Coventry, which is self funded nhs rather than private (or if you read back you will probably get the gist of it), but I'm still at the first testing stage. I have got an 8 week wait for my appointment with the RMC, when they take the blood tests so be prepared for that if you decide to go nhs. When I spoke to them yesterday about the tests, they told me that the nhs now advises not to do karyotyping on the parents unless this is indicated by a problem when they test the products of conception (sorry, horrible phrase). I'm not sure how this works if you haven't had those products tested. They said the only tests they do are all the clotting ones- 8 for APS and a couple of lupus and possibly a scan if your history suggests it. I have no idea if they should be doing more than this (anyone?) But I feel like they should!

On the plus side, if the clotting tests are normal, they won't need to repeat them in 6 weeks (which is what I previously understood they do) so fingers crossed they are negative. The whole process is very frustrating as they only find something In 50 % of cases, they rest are put down to bad luck. Grrrr. (Or the other possibility, which they don't mention, is that it's something they don't yet test for). A friend just emailed and she went private and was very happy with the care and tests. They apparently did everything, including the immunology tests, and results were quick, but I think it can get expensive. I believe in nhs so that would always be my preference but private would be tempting if we had more money.
Sorry for the long post!

Hi Dolly sorry you have had such a shitty year. There's a pretty standard set of tests that the NHS should do and the same tests will cost you £££ privately so if you are in the system and being referred I'd wait and see what you are offered. AFAIK if you are out of area for St Mary's (the top NHS centre for RMC) they only accept tertiary referrals (from a consultant in the relevant specialty) and the likelihood is if nothing is found on initial tests you'll be sent away to try again, not referred upwards. I'd save your pennies now to have the option of going to Coventry for immune/implantation testing, or as a private patient to St Mary's, a little further down the line if no cause is identified. You should be able to get the treatments those centres recommend on the NHS - I eventually got my diagnosis and plan from Coventry but was prescribed the meds by my GP and checked/scanned by the local RMC in my next pregnancy. If you see the London immunology doctors they tend to recommend treatments not provided by the NHS.

In your shoes I would take a break from TTC and concentrate on recovering a bit whilst you wait for NHS appointment. You need to have had about a 6 week interval postMC for some of the tests anyway. If no specific cause is found I would ignore the advice to go forth and multiply until I'd been to Coventry (they'll see you at v short notice but you need to be minimum 2 cycles postMC and 7-10 days post ov) It will mean 2-3 months of not TTC but after such a lot of losses in quick succession it will do you good, and you are young, time is on your side.

Hello dolly. So sorry for your losses. We understand what you're going through. One miscarriage is awful but recurrent miscarriages bring a whole new set of fears. Please be assured that your chances of a healthy pregnancy remain very good even if a cause isn't found.

I would pursue the nhs testing and save your funds in case you want to try nk cell testing in Coventry if the nhs tests come back normal. Before you have had three miscarriages the nhs attitude is hit and miss but after three I have found them very thorough. I had some limited insurance that enabled me to bring my consultation and initial tests forward but it actually only saved me three weeks and I have had further scans and tests on the nhs that would have bankrupted me! The other advantage is that I am now having nhs rmc care in early pregnancy which is scantastic and would have been very expensive privately. That said, if you want to book a private consultation while waiting for your appointment to come through that is totally up to you, though mine only took 4 weeks from referral. Good luck! Where in the country are you?