Assisted conception after recurrent miscarriage

[duggs1976]

Hey super ovulators and those struggling with infertility after miscarriage this is where we are! Come on over ...

Thanks lemon. How are you doing, you must be very close now??

ari thank goodness its not ectopic but sorry you are in limboland for another week, its totally crap

So sorry it wasn't conclusive Ari, how are you feeling about it all? Pretty relieved its not ectopic I imagine.

Relieved it's not ectopic pebbles, yes, very much so - but unbelievably frustrated that I can't just stop the meds and let my body miscarry. There is no way on this planet that a gestational sac that has only grown half a mm in one week can be a viable pregnancy, but because there was a change in that they can now see a yolk sac, they say I have to wait another week to see if anything else changes. All the while telling me that it cannot possibly be a viable pregnancy.

It's actually really doing my head in having to keep going and keep waiting, along with waiting at work to see if we're being made redundant again (which is making OH even less inclined to think about another IVF cycle in a few months' time, which is understandable of course but even more frustrating). Right now I could scream.

Anywhere you can go and have a good scream?! I always found the drive gone from work was good for a cry/scream!
Please rant away on here as much as you need to as we will all understand and feel for you in this horrible situation. You seem to be coping amazingly well.

I think if I started screaming/crying I'd never stop. OH's comment just now was (paraphrased) "well you're very strong and determined, and life goes on". My answer was, Strong? you've got to be kidding. Strong would be to say, Enough! and stop taking the meds no matter how much I'm being told to wait - while all the time they're also saying this cannot possibly be viable. I just don't see the point in carrying on supporting something that is going to die of its own accord anyway. I'd much rather stop taking the estrogen/progesterone and let it die off now, to let my body get back to normal. Everyone is saying it cannot live, so why won't they let me let it die? Tearing my bl**dy hair out here.

Sorry, rant over, I don't want to monopolise the thread!!!

Really sorry for what you're going through Ari. Rant away.
Last night I woke up at 3 and rather than going back to sleep stupidly started worrying about my son's glands again and didn't go back to sleep. I am trying to get through a very heavy working day after 5 hours sleep that was a very long time ago. I rang up the doc first thing and was straight with him about my fears and my poor little boy has just had a blood test, the results of which we'll get on Monday or Tuesday. Although the thing I really fear is lymphoma, which wouldn't show up on a blood test.
I think I must have delayed grief setting in after the last miscarriage, with which I thought I was coping okay, and that's why suddenly stress seems to be overwhelming me; stress and the general conspiracy of life to take all my babies. The news about the Down's pregnancy has somehow really knocked me for 6 and brought home the reality of ttc in one's 40s. Only last week I had the 'great idea' that I should reduce my bipolar meds, which I did, very slightly, and now look at me! I really ought to know by now that whenever I have this 'great idea', it's usually the very worst time for reducing them.

Oh ari hugs x

Ari relieved for you it is not an ectopic but being in limbo is the pits. You cling to the hope even though your head tells you not to. Feel free to rant away. I am just so sorry and sad for you and your family.

Brown sorry to hear you are having a tough time too. I hope that the blood results are able to help pinpoint why your DS is poorly. Life is so unfair at times, try and look after yourself as you grieve for your last mc, but remember we are here too.

Big hugs brown - it's really no wonder you're so stressed, what's amazing is that you're still functioning. There's nothing worse than knowing your child is ill when they can't tell you what's wrong. I really hope the blood tests come back with something useful - and easily treatable! Be gentle on yourself too, delayed reaction is very common and you've only just found out what was wrong so only now really can you start the grieving process. I hope DH is being a rock for you and as belly says, we're here for you too. xx

Ari I agree with you that I would want to stop all the drugs as what's the point if the pregnancy is not viable - surely it will just drag it out? I was really hoping that all would be OK at your scan yesterday. Thankgod it's not an ectopic though.

Brown I think that now you know what was wrong with your last pregnancy it makes it seem more real especially as you know it was a girl. I find grief can hit you a long time after the event especially as you are now worried about your son. I found with Scarlet I felt much worse about 6 months after she was I empathise completely with the conspiracy of life to take all our babies but surely it has to change soon???

Thanks for all the info on the DHEA I will have a look at all the suggestions. Brown have you stopped taking it?

sue What's more confusing for me is that we've stopped virtually all immune support - my last intralipids were 4 weeks ago and I'm supposed to be having them every 2 weeks, plus Penny had me stop the neupogen 2 weeks ago I think it is now. So the only thing I'm taking is 10mg pred, which I know darn well isn't going to do a thing. I've raised it with Penny a few times but she seems not to be bothered about it. It seems crazy to me, on one hand we're saying well we need to keep the estrogen & progesterone going while there are still signs of growth, but on the other hand we're allowing my v high NK cells a free hand. What's the point in maintaining estrogen & progesterone if my body's just killing off whatever it can? It seems utterly crazy to me, I don't understand it. I feel a real pest keep asking Penny about this, but seriously, what's the point?

brown How are you feeling today?

Thanks for your support everyone; 7 hours sleep does wonders for your perspective on things! And thank you Ari for still thinking of other people when you're going through such turmoil.
Sue, I have stopped the DHEA because I have a feeling that whatever benefits it gave me may still be operating - I am no longer the dry-skinned, perimenopausal woman I used to be, but oily-skinned and one would hope also still more fertile. I think of it as giving me youthfulness. With my current acne, I wouldn't take it again until that has died down completely. If it ever does! But I would certainly take it again if necessary. I felt fantastic on it, really mentally well and on the ball.
And you're right about the genetic test making everything more real; until then, as I'd said before, my whole pregnancy had been just a prolonged hopeful state of amenorrhea. We named our daughter Kolbrun. I'm half Icelandic and that's an Icelandic name for a dark child.
Ari; it is so odd about the immune therapy. I find myself swinging from one opinion to another. Now I'm wondering if every failed pregnancy of mine was just a crap egg, and nothing to do with NK cells. The fact that your body isn't rejecting the foetus now just confirms that opinion.

Brown I agree that I wonder if my probs too are down to having crap eggs and not immune related. If thats the case any future pregnancies are just down to good luck. Beautiful name for your little girl. I wish I could offer you some advice on how to cope with the grief but I still have dark days where it feels all consuming - just don't forget you are not alone.

I think I will buy some DHEA although I don't feel menopausal etc but hopefully it will help. Have ordered the agnus castus so will start on that first. Brown if you don't mind I might take you up on your offer of the DHEA so thanks. I will PM you my address details as don't think we live near each other!

Ari I think I would stop the pred if it was me to be honest. Are you using cyclogest still as that will prolong the pregnancy?

I did another test this morning and it was negative at 14dpo so I think my period must be on it's way.

Thanks Sue; yes, send me your address and I'll pop them in the post. They are 25mg tablets. Re. the genetic problems, I think that will add a extra new dimension of terror if and when I ever do conceive again, as I'm sure would the case for you too, but we'll cross that bridge when we come to it. I'm sure one day they'll be able to detect abnormalities so much earlier which would be so helpful.

Mmm We don't know that my body hasn't completely already killed off the embryo - we've only seen a very small gestational sac with a yolk sac, no sign at all of a developing foetus. I'm expecting next week's scan to show exactly the same as this week's. In my case this time it is very unlikely to have been a rubbish egg, since the lady that donated was one of Penny's 'super donors' who gets pregnancies every single time she donates. I really do think this was an immune attack, I said right from the start I didn't think I was on a high enough dose pred and doubted the neupogen would have been enough (others under Dr Braverman's protocol take 20mg pred from ET, not 10mg as I did), and I felt a flare of my usual immune issues within a week of ET I think it was, but Penny wasn't concerned. I'm absolutely certain the weak implantation/slow growth is down to my immune system, but it's too late to do anything about it now.

I'm still on both estrogen and cyclogest sue, as Penny has instructed me to keep taking both until the next scan - while all immune support other than 10mg pred has been removed. Crazy :(

I'm sure they will be able to detect genetic issues much earlier before too much longer, but not soon enough to help us unfortunately. Good luck with the DHEA and AC sue - remember that it takes about 3 months before both are said to be working optimally.

ari that's why I want to start the dhea ASAP as if I go for another round of ivf it will be in about four months.

I agree that yours sounds like an immune attack but I would have thought Penny had enough experience to direct you in the best way. Don't blame yourself or start to think what if as it would be far worse if the pregnancy had failed at 11 weeks. I still think the immunes have a part to play but I am sure if you had taken a higher dose you would have miscarried later on even though the egg came from a super donor. Younger women still have miscarriages so who knows if this one from her was one that was not viable? Even though the ivf clinics can test embryos there is still a high chance of a perfect one not getting a bfp or miscarrying and that's without our immune issues.

ari Although it could be immune you have been on pred for a while. Also this one you would be less likely to react to because the DE would be significantly different to you so would you not react less to it? I am not sure just throwing that out there. When will you know about work and the redundancies? It must be hard for you being in limbo in these 2 parts of your life. I agree with sue you can not be sure what the quality of the egg was like. It could well of had a genetic problem. I think you are doing much better than I would in your circumstances. It must be hard when your head is telling you one thing and in my heart I would still be hoping. We are all here for you to rant away.

Found out today that my friends cousin is due in september with her first baby at the age of 44 after 7 failed ivfs and 9 years of trying with 8 miscarriages. She is having immune treatment with dr gorgy inc lit, ivigs and steroids. There is hope!

duggs was it you who was seeing dr gorgy? Why did you not do ivf with him? I don't know much about him or the clinic he works at. Might be another consideration for me seeing as ZW appt is a month away.

Yes I saw dr Gorgy and must say I am very glad I did. If I had my time again I'd go straight to him over dr s every time! I am doing IVF with NHS this time as I've no children and been trying to conceive for 4 yrs and now in infertility camp so eligible so I have no choice but hammersmith. I may go with him if this fails but I have ARGC on my list based on success rates. My issue hasn't been immunes as they were normal after last mc so the nk diagnosis from dr s for me just distracted me from real issues which were hidden infections which caused sperm DNA fragmentation. Sue it was you who suggested this route last summer thankfully. I am now just battling with hormones being &*^ked up because of the steroids etc so trying to balance with Chinese medicine and acupuncture while ive been waiting for the NHS IVF. I wish I'd never heard of dr s tbh but hey ho, it is all so individual based on your issues. Dr G is pretty hardcore and thorough I'd say.

Glad to hear about that lady. Brilliant news.

Thanks ladies im def getting second opinion with dr gorgy now!!

It's hard to think but we've been trying for about 12 years on and off :(

Sue what did dr gorgy say her prob was in the end?

Not sure so I am finding out. I know she had high killer cells and that her and her DH were incompatible so they had lit treatment.

If money was no object I would try argc but some women can pay 15-20k if immune treatment is included. There's no way we can afford that! I also can't let the treatment take over my life as still have dd and school runs etc to think of. I know argc want to monitor you every day and I can't commit to that. I also don't want ivigs so think ZW don't use them as much as dr gorgy or argc. It's hard to know where to go but surely if ZW have a waiting list they must be good?!

Does anyone know which have the highest success rates for ivf, ZW or Dr Gorgy? They seem pretty similar from what I can tell but there is not much data to compare since dr ndukwe has started at ZW.

mel I try not to think of how long I have been trying for otherwise I would go mad!

I know sue it's not easy when you've a nearly 19 year old each year makes it harder :( now to convince hubby to see dr gorgy.. Think that would be a good plan!