Recurrent Miscarriage Support Thread - Thread 17 - Tests, treatment and trying again

[Flower29]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats

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Just caught up with the thread.
sebs I had my second m/c confirmed this week - I think we were both on the sept thread. I'm so sorry for your loss. keep in touch, I'm finding the ladies on here are really helping me x

Can anyone point me in the direction of a private consultant Hampshire/Sussex/Surrey way? Or would I be better heading up to London... If I ask google searching rmc I just keep getting Dr shehata and I'm trying to find alternatives.

mrs diddly I saw Mr Rai at St Mary's privately. He has a clinic in Harley Street too. He is not as progressive as Dr Shehata though so it depends what you're after. Is it the standard nhs tests or alternatives?

Apologies for random question mark - I seem to be having troubles posting. I did just post to say sorry to find myself on here again. I am currently going through mc no3, at 6+5, having had mc no2 at 7w last sept and mc no1 at 4w in 2013. I have a DS and had a totally smooth pg with him 5 years ago (I'm 38). It's not hit me as badly this time - although obviously I am heartbroken - but I was mentally more prepared for it and even managed to go straight to work after scan yesterday. Currently sitting in GP surgery waiting to be seen so can get a referral for tests. Hugs to everyone else on here. You helped me a lot last time!

twilight It's not just you, I found myself wishing Kate Middleton would have a mc - which is awful - not because I wanted anything bad to happen to her, more that she was perpetuating the fairy tale of pregnancy = baby, and if such a high profile pg ended in mc people might actually talk about it!!
Even DH has the pg announcement reaction now - we were watching something on TV where a character announced they were having a baby. DH said, no - you're pg, having a baby doesn't necessarily follow .

Sorry you find yourself back here again ron

ronconcoke I am sorry. Huge hugs. Your gp should not object to referring you but wishing you luck nonetheless. Please post more if you have any questions. It's super-shit though. You sound very brave but it might hit you later so I hope you have some RL support. We are here for you too.

So so sorry for what your going throug. sebsmum :-( I am still bleeding from my third m/c. I do have a consolation though in a beautiful 19 month old. I look at him and know it is worth it, i won't give up trying to give him a brother or sister. I might just wait til all the tests are back though before trying again. But then again, at 40, i havn't time to loose! I hope you are finding a way through today. I am finding distracting myself is really importaint to me, but i completely empathise with your feelings xx

twilight, so sorry to hear what's happened.
Hello everyone new, some really sad stories catching up today. Just awful.
March i saw something in paper day or 2 ago about Edinburgh RMC starting trial of treatment for women with 3 or more consecutive mcs, involves self jags for 2 months. Sorry not to have a link, but they'll have info at Infirmary no doubt.
Just back from 3 days in hosp with pneumonia. Was put on labour ward and had the best care round the clock... i was going into sepsis, so it got a bit scary with tubes chest xrays and masks and catheters (hateful things) dvt stockings and monitors. They were so nice, especially taking into account of prev losses and took care to reassure me and even got an early doppler to put mind at ease. I'm so grateful to them and to be ok as this is my last try and now 17wks. To lose it now.... Anyway, back hope and taking it vety easy.
Wishing peace of mind and sleep for those with heartache and loss, and love and luck and hope for all. And of course excitement for the nearly due dater!
Betty x x x

Sorry ronconcoke see you back here again, your second MC was around the time of my last. Has the EPU clinic not referred you, they really should after three. Big hugs coming your way x

Gosh sorry to hear that betty. Glad you're on the mend and the baby is ok.

Get well soon betty that sounds horrible. glad minibetty is ok.

welcome ron but sorry you find yourself here. Lots of newbies at the moment so some company in the testing process. Hope your GP gets the ball rolling ASAP. All previous comments about getting genetic testing done on the baby would apply if you haven't physically miscarried yet.

Our appointment today was a waste of time, they have mislaid her notes, nobody had a clue why we were there, there's no EEG report....sigh. I can't believe that in this day and age there is no computer system and they rely on carting around massive files of paper.

wow betty how scary! glad you are on the mend

Bless you all, thank you for all the kind words, it means everything right now.

Mum has just gone home and partner will be back around 6.30pm so I won't be on my own for long. My hospital have been totally brilliant this morning. I'm booked in to have MVA on Tuesday morning at around 9am, will be out at lunchtime. They are sending the baby off to be tested and have referred me to the recurrent MC unit where testing will begin around the 6 week post op date. She said they will get both me and my partner in initially where they will test for a while load of stuff then I'll be in again on my own. I think it's been fortunate (trying to find a silver lining) that's local hospital is pretty big and well known. I suspect of I was still living in Suffolk my local small hospital would be useless. So at least I know that all being well I will be recovering this time next week not waiting for a spontaneous natural MC.

baking that is so rubbish. You must be fuming. Xxx

Glad you got on well at the hospital seb and aren't going to be alone for long.

Hi Sebs. Glad to hear from you and that your hospital have been so responsive.

Baking - what utter rubbish that they didn't have your notes. Unbelievable. Have they at least booked you in as a priority asap?

Betty - sorry to hear you've had such a rough and frightening time of it but glad you're ok now.

Thanks folks for the reassurance about the dark thoughts! Glad it's not just me.

A warm welcome to all the newcomers. So sorry that you are going through this at the moment and that you find yourselves here but hopefully you will find support, information and some comfort here.

I'm also more than happy to give my number of anyone is in need of a chat or wants to offload, I know it can be really lonely in RL. Just pm me.

sebs glad to hear you've got your apps sorted. Very sorry to hear you felt so low this morning, all I can say is that there will be a day when you will smile again, you've sort of got to trust yourself that you'll get there.

betty oh no, you poor thing. Glad you are ok now though and baby Betty is fine too.

Re the bad feelings towards other pg women, I've had a few dreams where family/friends have miscarried (coincidently ones I'm angry with for saying the wrong thing/lack of acknowledge. I'm not sure if it's because subconsciously I want them to understand the agony of a mc without actually wishing it on them.

baking sorry the hospital are being fking shit again. It must be so frustrating to say the least! Thinking of you all and baby Faith x

mrsdiddly thank you for the cider advice! What are you after in a consultant? We are Sussex and I know the consultant I see practices privately too, but he's not into NK cells etc....

How utterly frustrating baking. That should never be allowed to happen. Hope it gets sorted quickly.

Glad you had a positive experience with the hospital sebs and that you have a plan. I always think it helps when you have a plan to focus on. Until then it just feels like you're swimming around in the fog.

That sounds awful betty. So relieved that all is ok with you and baby butterchops. Could it be the response trial that you are meaning? If so, it's for the drug nt100. They offered me the trial but i decided against it as I'm so scared of something bad happening, like the trial of that anti miscarriage drug in the 50s/60s that ended up causing cancer and uterine abnormalities in the daughters of mothers that took it. I know this is probably unlikely these days but I just decided I didn't want to risk it with an untested drug. Now I'm wondering if I made the wrong decision.

Likewise I'm happy to be a lifeline too by phone. And if anyone is a face booker and fancies a bit of real life support then feel free to pm me for real name. After all we are all in this together.

Baking that is shit!!!!

Right I need an AIBU on here ...

Feel like I've been "told off" today. A mutual friend has a housewarming and we've been invited as has single IVF pregnant friend (who I've barely spoken to since mc3 - hell even mc 2).

Anyway was saying to another mutual friend that I was dreading seeing her ( pregnant friend) and was told:

"I'm sure it must be hard for you, but if you saw her you'd be so happy for her as this is a huge thing for her. We really should cherish these moments in our friends lives"

Fuck. Right. Off is my answer to that. I'm sorry, I've lost 3 babies and no I don't have to be happy for someone. I don't have to cherish it. I don't see pregnant friend making time in her day to see how I am. Apart from a "honey I'm really sorry to hear that" when it happened.

Why is it I'm the unreasonable one??? I think even DP thinks I'm a bit unhinged as he did raise his eyebrows at me as I stomped around the kitchen.

So I told said friend that I was sorry but I couldn't think about preggo friend and my self preservation was more important. Same way that she had to be her priority to herself.

I'm sure that went down like a lead balloon and mutual friend is lovely and probably feels stuck in middle.

It's times like this that I get upset. When I feel like my grief is unacceptable and that I'm being unreasonable. I get defensive and angry and then upset.

and mini eggs tonight

As a pregnant friend I can say no, you're not being unreasonable. Sure she must have her own issues if she's having IVF, but it's you who needs the support and understanding. and mini eggs sounds perfect x

Brummie, I don't think you are being unreasonable, under the circumstances. It may be hard for others to understand because they can't empathize with your circumstances. One day you will be able to face these kinds of situations, but that day is not here yet. If your pg friend has had ivf I imagine she's felt the jealousy associated with infertility. Not quite the same, obviously, but a variation on a theme when it comes to seeing other of women. She might not like it, but she should be sensitive to you about it. It sounds like your other friend is the clueless one who doesn't understand the complexity of loss and grief. She may well think you are being unreasonable, but that's her problem, not yours. Good for you for at least trying to be honest. You could have just lied and made an excuse. You decided to be honest instead. She'll have to get over it. Look after yourself. x

longest and flen I'm not sure what I'm after! I guess I don't want to wait for a possible third mc ... I want reassurance that standard things are as they should be so I can rule stuff out or get any treatment that might help in future. My gp's done some basic blood tests but I haven't a clue if they were really that relevant.
longest did you have to wait long for an appointment with Mr rai? Was he useful/reassuring? Do you mind sharing how much it cost to see him. Feel free to pm if you prefer.
flen who do you see?

How come holidays are so exhausting? Maybe its our choice of holiday. Dh does seem to be coming round to how broken my head and body feels to me and how paying someone would help me as opposed to leaving me to make all the decisions because it's my body that provides the temporary housing to any potential future offspring.

brummie you are most certainly not being unreasonable. and mini eggs all round I say!

Brummie - 100% what Just said plus an additional she (friend) can fuck right off.

I'm on the wine tonight - eats a handful of mini eggs