Recurrent Miscarriage Support thread 14 - tests, treatment, trying again

[Justonemoretime]

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 :)

Oh, bootles I am so so sorry to hear that all your hopes and dreams have been crushed again, sending a big big hug your way. There is never a good time to find out about an MC, but it's particularly awful at Christmas, when everything is so family-oriented - my heart goes out to you.
Please unload whatever whenever you want here, that's what we're here for xxx

bootles I am so very sorry (((hugs)))

Oh no. bootles I'm so so sad to hear your news. What a horrendous thing to be going through at this time of year (awful at any time but particularly bad now). Massive hugs to you. You mustn't feel like you've let anyone down, we are all here for you to say whatever you like. All of us understand this to some extent, though everyone's experiences are different. Like tanny said, don't give up hope.
About telling your family. If you are even considering speaking to them about it then I would say do it. You could do with all the support in RL you can get at the moment.
We are here to listen and for virtual hugs and hand holding, now or whenever you are ready

Oh gosh bootles I am so sorry

Thanks everyone. It really helps to feel supported on here. I keep thinking maybe the scanner wasn't working and they haven't realised yet..of course I know that's ridiculous. Tanny I did e-mail Prof Brosens on Christmas eve, and he wonders if its a chromosomal issue and that's why at the last scan it measured about 4 days behind dates. But I KNOW I ovulated late, as per OPK (which I know are not 100%) and because I get quite bad ovulation pain. I got it around day 18, and then a v faint bfp 10 days later, which is always how long it takes for a bfp to show up. And if I go by my O date it fitted perfectly in terms of growth, plus it grew 10mm in 10 days which is the expected rate. It could still be chromosomal I know.

The Dr who diagnosed it was unhelpful. He seemed to treat me like a bit of science, said he didn't expect to find no HB, and I should consider IVF and selection of embryos, and he has a couple at the moment for whom ALL their embryo's were found to abnormal with this method, and it helped them to draw a line under it. This sas minutes after confirming no hb when i real!y couldnt think about anything other than squishing emotion for DS. It took him a few minutes to say I'd have to go private (which we couldn't afford) and he said this without knowing any of my history. When I said 2 of the mc were found to be chromosomally normal he just didn't say anything. And that's the other thing...St. Mary's stick to chromosomal abnormalities as a cause, and note that the method used to test the last one didn't look at all the chromosomes, so that's their answer. But a genetic counsellor I saw for the tfmr, who specialises specifically in genetics and chromosomes, and the tests used, said although it was possible to be some weird chromosomal or gene abnormality it was really unlikely, and the test had looked at the main chromosomes that tend to be affected. So as per usual there are differing opinions, leaving me wondering what the hell the issue is.

My losses were: (some mmc some not) embryo death at 7.5 wks; severe abnormalities at 12 wks but normal chromosomes; T22 anembryonic; embryo death at 8.5 but way way behind dates, and though a HB it never got bigger than 5mm - normal chromosomes but St. Marys disagree; and this one which was spot on by my O dates with 2 good scans and grew a mm a day until it suddenly died. I can't see a link.

The only thing we have never had is karyotyping ourselves, because OH basically couldn't deal with it. The genetic counsellor said it was unlikely to be an issue - we have very different gene pools, no chance of being related, a healthy son together, and no family history. Actually his mothers history is questionnable but they are not in communication, and she still produced 5 healthy children anyway.

Sorry I know I am going on, but I am so frustrated and sad. It can't be an implantation issue to have got to 9+6, or maybe it was the medicines that helped it get that far. I accepted the first three, went to Coventry after the 4th, and now am at a loss.

I don't even know how to broach it with my family, but have been feeling increasingly isolated trying to cover up 3 pg and mc's this year. E-mail maybe.

Apologies for monopolising the thread, I promise I won't bang on about me after this, I just have so much AARRGGHHH and nowhere for it to go.

To clarify: I saw the genetic counsellor originally for the 2nd loss, but asked her opinion about every loss after that.

It's so hard to know what to say bootles. All this is so complex that even the experts can't agree, so how are you meant to make sense of it all? The consultant you saw sounds very clinical and whilst I'm sure he meant well, some people just aren't very good at verbalising things or sensitive to people's personal circumstances.
I think it is quite possible that you have been correctly treating one thing (the high uNK) and then been 'unlucky' enough to also have a chromosomal abnormality on top of that, as prof brosens suggested (and when i say unlucky, what I actually mean is an occurrence that they haven't yet worked out why it happens or how to stop it). And if that is the case, that doesn't mean it's going to happen again necessarily. I am presuming you will have tests carried out for that, so maybe that will help in a small way,though I'm sure that doesn't help at all at the moment.
About your family. Is there one that you are closer to, that you could confide in and they could tell the others? I found it easier with the last one to tell my sister, who I'm closer to, and got her to tell my mum. I don't know if it will fit your circumstances but I just knew i would struggle with the emotion of telling her directly as she can be a bit blunt and i thought her reaction might be better if she had time to think about what to say and discuss it with my sis. Maybe an email would have the same effect, as it gives them time to think. Families are so hard sometimes but I'm sure they will be supportive when they know.
It's all just so cruel that you have to go through this again

Thanks march, I appreciate the comments. I think you are right about all of it. Yes hopefully they will have no trouble getting results from the 'products' - baby, it was my baby, and I hope it brings some answers.
Its a good idea about just telling one of my family members. I'm probably closest to my younger sister but she has a crazy busy life and there's never a good moment, plus I am in touch a lot less these days due to her busy life, and my general withdrawal from them. My mum is more available, and I think will be supportive. I can't bear anyone's initial reaction so e-mail is the forward. Tomorrow maybe.....

bootles everything you say sounds right, but so complex and confusing it's hard to know what to advise. I am sorry the consultant was so cold and unfeeling. He can't know what it's like to go through five mcs. I hope prof brosens is able to help more and you get some answers from the genetic testing in due course, and some support from your family in the meantime.

Don't be silly about monopolising the thread or letting us down. Our hearts are aching for you. Hugs. Xxxx

That doctor sounds like he needs a kick up the arse. I fucking hate these men who become gynaecologists and yet seem to have such scant regard for, or understanding of, women. Sorry, but its vile to be treated that way, Bootles, and I am proper angry on your behalf...

And you're right, it was your baby, and you have a right to think of it as such, and to need time to mourn.

Any genetic tests will take a while to come back, and then you will hopefully be able to answer some of these questions. I agree that there doesn't seem to be an obvious pattern there, but you know your nk cells are high and you have a treatment plan for that. If you have some random chromosomal issues thrown in, then that might explain this loss, along with others. But now I'm second guessing.

We continue to be here for you, and god knows you've been a brick for us on the past. Feel free to vent, rant, cry here...

Thanks longest and Tanny. He started talking about donor eggs as well..it wasn't an appropriate time, and as I say he knew none of my history. He just didn't seem to get it. I was trying to say 'right, its Christmas eve and I have a 3 year old, I need to put this on the back burner and do Christmas' but it took ages to get the words out because I was trying not to cry as DS was there. He just looked at me oddly and said 'yeeees'. I'm probably being overly sensitive, and maybe he was trying, but its a shame that these things stick as a part of the who!e mc process.

I've told work and have next week off (I do 3 days a week) to hopefully get erpc sorted, and in the past have gone back fairly soon. I don't know if I will ready in a week though, my job is medical and involves lots of pregnancy, and constantly talking all day. I'll just have to see.

Anyway. How's everyone else? Tanny how are you bearing up in terms of your dad? It sounds liks alcoholism is a disease very close to you, hats off to you and DH for giving up the booze, that's a very hard thing to do.

Bootles, my 5th was the one it took ages to recover from, so do try to take the time you need, rather than pressure yourself to go back too soon.

I'm OK at the moment. My mum is overseas for Christmas, and I've been talking to her on Skype. She doesn't get any of my emotions and just rests all the ills of my childhood on my dad's shoulders. I struggle with this assessment, it's too black and white for me. I'm not trying to claim that he was a victim of the demon drink, it takes years of dedication to develop that degree of addiction, but he was a victim of quite horrific violence as a child and it haunted him in later years. His dad was also an alcoholic, and my not drinking is because I recognised what I could become.

I was a problem drinker with an alcoholic partner. I could only see one future if we didn't stop, and it certainly didn't include a lovely 4 bed house and two more kids, which is what we (hopefully) have now. I am thankful every day that my dad didn't repeat his own dad's violence, and that I have broken the link with alcoholism.

Sorry, that is probably quite a "reveal" for here, but I'm not ashamed of my past, on the contrary, I think my past is a lot of people's present, and I hope I prove that if it feels like a problem then it probably is...

Anyway, I'll shut up about it now. I'm doing OK. Back to work next week, and prepare for the funeral in the new year.

Tanny, you are quite an exceptional lady dealing with the sad news about your dad and sharing your previous experiences. It does seem that you are getting your happy ending and certainly inspiration to meet.

Bootles, the biggest lesson I have learnt along this journey is to take each day as it comes. It's understandable that you want answers immediately and starting to think about the next time but remember you need to give yourself to deal with the hear and now. Perhaps once you've had your appointment on Monday you may get a better view how your local hospital will help.

Only just read it. So sorry Bootles... My 4th hit me hard but it was after the 5th I went for more counselling and tried to make sense but for me that was also Coventry and you went there.
See what Prof.Brosens advises next...

Give your DS a great big hug and remember it's OK for him to see you a bit sad...

bootles huge hugs for you, I am so so sorry to hear your news and can't say anything which will be helpful. I agree with everything already said, don't give up but do take some time for yourself if you can, so hard at this time of the year. We're here for you and post as much as you want, anything that might help. I agree about reaching out to your family, it's hard to do but might be a easier to know they know what's going on. I actually used Flen's blog to try and explain some of what I was feeling as I wasn't being articulate. For me, e-mail was best and then a phone coversation once they knew. I know everyone's family is different but for me, it was such a relief when they knew.
Sorry, this is a bit rambling as on my phone and hard to look back. Wish there was more I could say, huge hugs though and look after yourself.

tanny hugs for you, sure it was a hard time of year for your, hope you're ok.

Thanks guys. Prof Brosens at the moment is just saying get the products tested, I'm not sure there is much more he can say until we have results. On Monday they will just go through the erpc stuff and try to fit me in that day - its via EPAU so don't think there is much more than that they can do. Yes one day at a time.

tanny life can be so complex, and to me is rarely black and white. I hope you are very, very proud of what you and your DH have achieved. To have broken the pattern and seen the road you could have gone down, and taken a different path, takes huge strength and determination. The fact that you did it together to achieve a better future is beautiful.

RMC is tough enough, but when its on top of other things everything is compounded. I have had a mega stressful few years, and honestly wonder if stress has ruined my eggs...or too much drinking etc in my youth...I guess I'll never know.

Wow tanny good for you. That's a lot to get on top of. Good for you (not meant to sound patronising!).

bootles - rotten place to be. Again so sorry. I hope you get some answers, though I'm learning they tend to mean more questions

The immense strength of the women on this thread never ceases to amaze me. bootles I am so so sorry for your loss. Your determination to make christmas special for your ds in the midst of your heart break is so astounding. You are an incredible mother. Your consultant sounds like a total arse with all the compassion of a dalek. You were not being over sensitive, a first year house officer should have known that this was not a discussion to have with you a) with your ds there b) immediately after the scan and c) without knowing your history.
I do think letting one of your family members understand the extent of your losses might be helpful. I have one sister in london who knows my story but the rest of the family only bits and bobs. She has helped me duck out of stuff when needs be.
I hope you get the erpc sorted asap and that you get some answers. I understand your frustration with the lack of a consistent view of what is causing your losses. Perhaps counselling would help you process all this as tiny suggests. I so very hope that 2015 brings you better fortune, you deserve it. Big big hugs to you.
tanny you have my total respect. I have drinkers on both sides of my family and see the effects rippling down through the generations in my cousins and second cousins. There are multiple casualties. Breaking this cycle is a huge achievement, and hats off to you for speaking out. I am irish and alcohol is so much part of the culture that problem drinking can go unchecked and unchallenged for years, until it is too late. You have done the absolute best thing for you and your children, and I can't begin to fathom how difficult it must have been, again you are an amazing mother.

Has anyone gained a massive amount of weight over Xmas week? I went to my slimming world weigh in yesterday and found I had gained 5.5 pounds in 9 days! Back on plan today

Wow Girlie! Well done for some proper gluttony. I haven't dared get on the scales for well over a week, but I can see bits of me are definitely more rotund (and not just the bump!). Don't worry, a couple of weeks of SW will shift it, I'm a big fan of their diet and it really works x

Thanks Tanny, I was impressed with my gluttony! Been doing Sw for over 10 years on and off so I know it works, just a case of sticking to it x

Bootles, I've been thinking of you. How are you getting on? I know it must be unbelievably hard. For me #3 died, we think, within days of a 'good' scan at 9.1 wks, and genetic testing revealed Turner syndrome. it did help a bit to get that diagnosis. I hope that you can get some kind of explanation to bring you some comfort. You're in my thoughts.

bootles I'm so, so sorry you're having to find the strength to go through this again. I am appalled, but sadly not surprised, at the lack of compassion at and after the scan. You are definitely not being oversensitive. It doesn't matter how quickly you went back to work previously, take it one day at a time and take as long as you need.

tanny I really admire you for recognising the problem and acting on it. My ex had a problem with alcohol but he couldn't see it. I stopped drinking when I was around him as I needed to be sober when he got drunk and unpredictable, and even years later it's changed my drinking habits completely. I don't think I've actually been 'drunk' since, I'll stick to a glass of wine, occasionally two, or one g&t. I don't like being around people who are totally drunk anymore either, I'll always leave a wedding or party before it gets to that stage.

tiny I think part of the problem with infertility and mc is that people have no idea what is going on and therefore make assumptions, when the reality is a very different story. I know women who others have written off as 'career women' when actually they've gone through years of infertility and throwing themselves into work is the only way they've coped. I don't think there's any way to approach it directly, but just stick up for her amongst family, pointing out no-one knows the story behind closed doors, and if you feel able, mention a 'friend' who's going through fertility problems to your cousin, giving him the opportunity to speak if he wishes. I have run out of/ cried at/ avoided more christenings, baby showers, birthdays etc that I can count in the last 3 years. I end up feeling really guilty afterwards and wondering what people thinking of me. On the occasions when the woman in question has known why I acted like that, and told me she understood, it made such a huge difference to me as I knew I wasn't offending anyone on top of getting upset myself.
That was a very long winded way of me saying if you can somehow get across this empathy for women who are struggling, it might make your cousin and his wife feel less awkward for avoiding you, if that's what the story is.

I've just got home from my 'christmas isn't happening' holiday, which was wonderful. Just me and DH, and not a scrap of tinsel or a morsel of Turkey. Perfect. Have found the last three Christmases without a baby or bump increasingly difficult, so opted out entirely this year. Fingers crossed next year will be a happy year for everyone.

Oh Bootles I am so sorry to hear your news. You are incredibly brave to have carried on with all the festivities nonetheless. I am lost for words at the behaviour of the consultant.

Hope your erpc goes ok given the circumstances.

I was told the same by st Mary's - embryo selection as my mcs were v early. I hope the Coventry team are able to find some answers for you. How much pred were you on?

I too have been thinking of you bootles. Sending you big hugs and hope things do not feel overwhelming now Christmas is over. Hope the consultants are around as soon as you're ready to talk to them. Yes definitely take a bit of time off work. Counterproductive to rush back.

Can I add my admiration for tanny to the thread. My mum is a problem drinker which is pary why Christmas can be so stressful. I have to keep an eye on my own habits to make sure I don't go the same way as I suspect I have the same traits.

Back home now, which is nice but have been trying to have a clear out to make room for all the new toys and have ended up grumpy, tired and sick, and dd is whining because all her friends are still away. Have to say this post Christmas lull is one of my least favourite times of year. Roll on back to work! Xx