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'.

Just been reading this about the aspirin debate - scroll down for the interview with Professor Arri Coomarasamy. I wonder when this will actually filter down to local services?!

Interesting. Also interesting is the minimal number of NHS trusts involved in research to look more closely at ways to help women cope psychologically.

Yes, a really interesting read, and I agree, the psychological support trial interested me too. We prove that peer support works, but sometimes it's not enough, and face to face support would have been helpful, certainly for me. Support from someone who understands, and contact with services that recognise that multiple losses have a deeply scarring effect, would have helped me, I don't know if you agree?

I agree. Never mind the snake oil, I've spent a fortune on counselling and cognitive hypnotherapy. That would have been a nice thing to have been offered as part of my treatment. Mind you, the free education in obs & gynae was an unexpected freebie; I reckon I could pass an exam at medical school in at least some of the modules...

The psychological pilot at Princess Ann's was mentioned to me at the last EPU but I had completely forgotten about it until I read here. Think I'll follow up tomorrow and see if I can get involved.

Its just a shame there is not enough money to go round, to look at both the physical causes and the psychological support that in general seems to be somewhat lacking. I have met some great medical professionals along the way, and some not so great.

Interesting updates, I work in clinical research so interesting to see what's going on in this area, I am generally just oncology studies.
Agree that it would be nice to see more psychological support offered - feeling like I need it today! Coming out of the 'stay manically busy and pretend it's fine' phase and realizing we're back to square 1

Hope everyone has had a nice weekend

When I was going through MC after MC, I felt that whilst everyone was kind and supportive, I had to explain myself and my history every time, and I could have really done with someone at EPU being a named worker, who knew me. And more ongoing support than a leaflet. It's hard isn't it? We are a minority, but it still feels isolating and incredibly lonely when you go through it...

On the upside, I have to say that my support throughout this pregnancy has been wonderful. My midwives have been brilliant and offered reassurance doppler when I need it, and are really understanding that I will have lots of wobbles. I did today, was in floods of uncontrollable tears, and they called me in for a listen. It feels like it's going to be a long few months!

((hand holding)) Tanny. xx

Hugs tanny...and to the midwives who were happy to call you in for a listen. It must be so very hard to stay sane x

Sending hugs Tanny I hope you are feeling reassured

Bythesea I'm right there in the realisation phase with you. It really is a bit of a struggle to go back to normal isn't it? Psychological support would not go amiss!

I've finished work for the day and am enjoying my few hours of 'weekend' before it all starts again tomorrow! Can't deny that I am sitting in front of the telly with wine and icecream! Hope you've all had lovely weekends.

Thanks lovelies, you made me cry again! x

Bristolian & bythesea- I'm right with you in the realisation phase. To cap it I've realised I have a girly meal planned on Saturday where one of the girls is 3 weeks away from her due date, which would have been 4 weeks before my first mc due date. Whilst I am very happy for my friend I'm not sure I can face seeing her with her big belly. But at the same time I don't want to let the MCs rule my life. Also have my mid year review today which I'm not looking forward to as for the first time in a long term I won't get an over delivery grade, due to what's happened. I know it's perfectly normal but doesn't make it any easy. And to cap it, it's a wet Monday morning!

Tanny- lots of hugs x

girlie you are not alone! Just saw one of my colleagues who has a lovely bump and really struggled. Do what you feel is right on the night and don't worry about anyone else.

Thanks Bristolian managed to burst into tears in my review today which wasn't my best moment. My manager was lovely so it wasn't too bad. Going to see how I feel nearer the weekend and decide what to do then. Hopefully it gets easier over time......

I have just completed the questionnaire for Prof Regan and it looks quite stark now everything is in black and white.

I can sympathise with the mid-year review and worries about letting things slip (I am sure you haven't girlie) as I have had more sick days in the past 12 months than in my entire working life! I am seeing my boss tomorrow and am considering spilling the beans about all of this - he lives in Jersey, I am in London - but not sure where that leaves me in the career stakes. Seems hard to keep it secret but I worry I will be looked over for promotion if they realise that my plan is to (fingers crossed) get pregnant and go on maternity leave.. Can't blame them in some respects but it doesn't help with all these conflicting feelings.

Luckily my folks have just come back from Spain and brought me some turron (almond nougat or also THE BEST THING IN THE WORLD EVER!).

Have started yoga and finding the relaxation that provides to be very good.

Hugs to all.

PS thanks bootles for your encouragement and fingers crossed Prof Regan comes up trumps next week.. X

Ladies - I have some books looking for a new home. One copy of "Is your body baby friendly" by Alan Beer (v comprehensive tome on immune causes of miscarriage but not exactly light reading) and "Coming to Term" by John Cohen, which is an overview of miscarriage research mixed with his personal experiences of loss (much easier to read) Happy to post them out to you - PM me if you are interested, first come first served!

FFS - phone just deleted my message.

In brief, I have joined the ranks of the unexplained recurrent miscarriers with them being put down to age (32) and bad luck.

Hey to everyone else. Hugs to Tanny. Bit too despondent to do a proper message again, sorry to be a bit me me me.

twilight I know I sound like a fan girl but try Coventry...

All my freaking tests were normal as well... and it was the Coventry protocol that seems to be working

And 32 isn't bloody old! I am 41 for goodness sake!

twilight I can't believe they are trotting out the age thing to a 32 yr old! You are positively a spring chicken and the background MC rate doesn't go up significantly until you are in your forties. The 'bad luck' thing really gets on my tits. Be honest - say "we don't understand the reason for your losses, your tests are normal". How can anyone be expected to believe after 4+ MC that they are just unlucky?? you know I'm going to tell you to see Prof Q so I won't even say it

Thanks guys. I knew you'd make me feel better. I did sort of role my eyes at the age thing too. The majority of the appointment was spent with them rooting around looking for a second coil that didn't actually exist which added insult to injury! Now heading back to Essex (eating my weight in bad food on the train).

I am now obviously thinking about Coventry. Remind me of what you have to do... phone them at a particular time with a particular date isn't it?

Oh, and I managed to bite back that I started miscarrying at 29. Grrrr

I'm just surprised I got nothing about my weight

Phone them when you ovulate, as your appointment is then 7 to 10 days later

£360 and in my opinion worth every penny