Assisted Conception (and the bits in between) Volume 6

[rowingboat]

Hi all,
I just went to post on the old thread and noticed it had been locked, so here is a new one!
Come on in!

Horton So sorry to hear about the horrid BFN, I know from experience that there is nothing I can say that will help, just thinking of you lots and hopefully if it is implantation they may be able to tweak it next time to make those little embies stick! I always found sunshine helped me and tried to book holidays when everything fell down around me. Take care of yourself.

Singsong yep we've all been there and turned from chilled out souls to the type of people we used to just look at and think we'll never become! Ttc does that to you, it completely changes your personality, I think it is the primevial side of reproducing that just takes over. I became a lot less stressed once I was finally having fertility treatment as it felt that I was actually doing something about it and so you'll probably find it won't be too bad

Dueling so pleased for you and your SIL as it must have been hard on her when you became pg. Now your little one will have a new cousin! Take care and good luck over the next 3 months

newbishad1 I can understand how you must feel about the clinic. I really don't think they understand how stressfull it is for us and each little embie really feels like a little baby. It is so wierd to trust those to other people and I found it strange to think that they should be in my body and not being looked after by strangers. They thing that really helped me through my IVF was thinking that after 4 years of trying, that cycle I actually had a 40% chance of becoming pregnant and that is a really good percentage compared to natural conceiving. Fingers crossed for you - good luck

Thanks to all, for the kind words. And thanks for the Alan Beer info, BB, will look that up. It really does suck, doesn't it?

singsong, good luck with it all. I agree that once you start treatment, you do at least feel that you are doing something positive. Even if it doesn't work!

Babybarrister, what's the quacky drip stuff? I did reply to you on the other earlier thread, did you see it? - Please don't think that validation by the FDA isn't the be-all-and-end-all - I'm wondering if you're referring to iVIG, in which case it is approved by the FDA for use in pregnancy in certain conditions, but over 70% of its worldwide usage is off label.

Taranissi uses iVIG for highly raised NKs pre conception, and Humira for raised cytokines. Both uses are off label and are likely to remain so, because trialling any treatment in this patient group is extremely difficult to do from an ethical point of view.

Apparently another practitioner, Amin Gafur, has set up in Surrey. He was previously at ARGC and worked with Taranissi (and looked after me when I had my son) and now has a private practice similar to Shehata and Gorgy, but cheaper cos he's not in central London. He was lovely when he looked after me - really kind and paternal.

Hope you find a way through very soon.

It is a pity that so much of assisted conception seems such a dark art.
Stimulating can be very cack-handed and the clinics seem quite surprised at the range of responses. OK they might change the protocol for the next cycle and hope for the best, but it's a bit inexact.
Why can't they do a few trial stims, for a few days to check the response, before actually stimming for a full cycle.
From what I have read there isn't a great deal done to improve implantation, other than to address problems like blood-clotting or an over-active immune system.
If there are no obvious problems there doesn't seem to be much on offer to enhance the chances of implantation, other than just doling out progesterone.
For example I have read that IVF clinics are now trying to incorporate the serum from the sperm to help prepare the lining of the uterus (although they don't know why it helps) whereas some clinics tell patients not to have sex.
There just seems to be an 'in they go, fingers crossed' kind of approach. Surely other fields in medicine have a more detailed approach.
My impression of the clinics I have attended is that they are well-meaning, but slightly 'in the dark'.
Where is the research, why is innovation so slow in this area?
We will probably look back and laugh at the current treatment in ten years time (I hope).

BB, if you haven't researched it, why have you written it off as "quackery"? Immunoglobulin is one of the most widely used blood products on the planet!! ALL of the global experts on rpt mc and implantation failure use it, in appropriate patients, to stunning success. Not everyone needs it - I had steroid therapy instead as some of my Nks went very low. Incidentally, dexamethasone and prednisone are ALSO not FDA approved for use in this setting, and I'm pretty sure aspirin isn't either, and to repeat myself, that's because it's hard to trial and assimilate robust data on efficacy in this patient group.
You've mentioned the Alan Beer book - his clinic use iVIG, by the way.

Here's some further published articles - they're not new, iVIG has been around a long time!

www.ncbi.nlm.nih.gov/pubmed/11723539

ivfinisrael.com/articles/recurrent_IVF_failure_and_HLA_similarity.pdf

humrep.oxfordjournals.org/content/9/12/2265.abstract

This excellent article by Dr Geoff Sher (of the famous Sher clinic) outlines all immunotherapy, and concludes that women with rpt ivf failure and raised nks have a 10x lower chance of success through ivf than those who receive heparin/iVIG.

Rowingboat, ARGC assess their drugs and dosage daily, for optimum stims response, and that way they get a good egg yield even in patients who have been classed as poor responders elsewhere, and also minimise the chance of over stimulation. That's why they are so expensive - you have to go daily for bloods during stims, even at weekends, and daily scans from about day5, rising to twice daily scans and bloods towards the end. They only do egg collection when you're absolutely ripe and try to take everyone to blastocyst stage, with ICSI rather than ivf. That's where they get their results from.

Sorry, here's the Sher link

www.storknet.com/cubbies/infertility/exgs4.htm

Hi all,
BOH ARGC do seem to be pretty exhaustive in their approach. It's a pity other clinics can't offer a more comprehensive approach. It might save on repeat treatments, stress and our purses.
For me the the cause of infertility is physical, not hormonal and I feel there should be better understanding of how conception actually works as a whole.
As I said, from the research I have been looking at there are many areas of fertility which remain a mystery.
I have read research where the clinic pay a great deal of attention to the make-up of the endometrium, in an attempt to replace the embryos when the lining is receptive, but this is non-standard. Those articles I have seen freely admit that there isn't a great deal of knowledge as to how the whole process 'works'.
My opinion is that, until, the research catches up the results will be unpredictable.
It just seems like such a lottery at the moment.
I have no idea as to whether I will give birth again. I suppose there are the percentages to look, but I would love them to rise in our favour.

BB - I know nothing about IVIG for pregnancy but as someone with an immune disorder I know that IVIG is vital for people with CVID and if my immune deficiency deteriorates further I will need it for life. It can make a real difference to people with primary immune disorders.

Italian - well done on your weigh in - keep going!

Well I see the consultant next week and hopefully will get a protocol of treatment. Bizarrely it has made me feel low this week, despite this being what I have been longing for for months and I have started comfort eating (not so good!) - is this just me?

BB, I'm very interested in your replies. I thought I'd have a look to see what the FDA actually HAVE approved for use in the setting of recurrent implantation failure, or even in miscarriage prevention in patients with unknown cause and couldn't find anything. Not a single drug approved. There's plenty of experience of use but not formal approval, and that INCLUDES steroids.

I suspect that the reason for this is the same as in the UK: When a drugs company discovers a molecule, they have 20 years from registration to trial it, and bring it to market. After that, the molecule loses its patent and anyone can produce and sell it. That's why Tesco ibprofen is exactly the same as Sainsbury ibuprofen - same molecule. So, for ANY manufacturer, adn especially the originator, there's very little point in trying to widen the licence of the molecule - what's the point in paying for all that trial work, publishing etc, for another manufacturer to churn it out and sell it to the new customer base. So what happens is, older molecules are routinely used for all sorts of purposes - think of low dose aspirin used in stroke prevention for example - it's not approved for it but it works. And that's what is happening here with iVIG, prednisone, dexamethasone etc. They're widely used but not approved. And that's without the expense and trouble involved in trialling with potentially pregnant women - after Distillers and Thalomide European ethics committees are incredibly skittish about trialling in such patients and the US is just the same.

SO this is what I'm saying - using FDA approval as a yardstick isn't a good idea - almost pointless - you may as well look at peer-reviewed published data, published in well respected journals by well respected authors.

And why use the FDA rather than UK marketing authority? You're assuming that they are more stringent, when in fact there is an argument that there's a much stronger financial bias in the US when compared with the state run approval process here in the UK.

Hope that's food for thought!

i truly truly wish that i was one of those people that had no problem conceiving or carrying a baby... my sister (2 children, first time with each...) has no idea about any of the detail involved in conception.... like the term 'luteal phase' like how long an egg lasts etc

i would really like to be that naive again so that making the baby was magical rather than a chore and another task that has to be ticked off every day from day 6 to day 22......

who the heck wants to know about IVIG and look into the differences between FDA and UK approval process?? (i do BTW, I have read the Alan Beer book, I have looked into all that 'stuff') i just really wish that we all didnt have to be THIS active in the quest for a child.. ahhh wouldnt it be nice if it just happened without all the ruddy research and drugs and gumff... so could just sit bac, relax and let it all happen with confidence that it would work?

rant over. reeling. last natural cycle before IVF clinic enslaught and AF due any tick now and angry and tired that bloody body just doesnt work as it was meant to. humph.

Lateatwork, your post makes me fill up. I couldn't agree more. I wish I could be one of the Jeremy Kyle millions who had a drunk shag over some bins and got pregnant. And even though we're coming out the other side of childlessness I still have terrible rages about how sodding hard it was to get to this point. X x

Laeatwork,

I agree wholeheartidly. I am on the 2ww, will have to travel back to Ireland the same day as testing, via road, ferry and 2 day stop in Liverpool. Yes and I'm starting a new job there.Expect it not to work somehow (only 1 smallish blast survived the thaw) and will be crashing on hormones duing that endless journey across the UK. I'm absolutley shattered now, a couple of nights poor sleep, plus Dad seriously ill in hospital.

Oh to be nieve again. Ten years ago I did a PhD on adolescent pregnancy and all that goes with it!!! Remember you can get pregnant the first time. That message over and over and over again. Never knew there was such a thing as unplanned childlessness. I am blessed to have one healthy child, I know that but I would love her to have a sibling and it is so easy for some people.

Oh yes I have rages. And the unfairness of adoption. Thanks Lateatwork for putting it into words.

Love Newbishad

Hello Laeatwork, I often think about that too all those Jeremy Kyle 'stars' that have a one night stand and are pg, who drink, smoke and do drugs and heh have a perfectly healthy baby! Do you think there might just a few thatdo all that and still don't get pg and miss the opportunity of a DNA test on national tv??

The funny thing is with this ttc thingy that my parents (who fell pg all too easily) are now just as narked off and angry with all those on the show and seem to see pg teenagers everywhere now! Do you think when you have to go through the awfulness of ttc that you have a magnet to all those people and suddenly you get more than your fairshare of encounters??? Definately seems that way.

When I mc my first I was working on trauma wards and it seemed that every week there was a new patient who had either got high and then crashed car or broke leg. All miraculously had healthy babies and no other complications. I used to go home and just cry at the unfairness of it all .

Newbishad yep all that talk about once is all it takes, it is crazy and I sometimes wonder if those who didn't do all the work at school and just had kids when they wanted knew something I didn't!

Anyway enough ranting from me, good luck to all those on their 2ww

Horton--I'm so sorry about your BFN. Hoping you stay positive and giving you a big virtual hug!

Late--Amen, sister! It kills me whenever I see these young, irresponsible girls getting knocked up because they were too lazy to get a condom, etc, etc. And we have to work so hard!

Had my EC today, and they only managed to get four. Was super upset, but keep repeating "Quality, not quantity!" in my head, over and over. Resting in bed and distracting myself with Dexter Season 1.

newbishad1 so sorry your dad is ill , I really hope he will be better soon. All the best for your one little blast, may it hang on in there.
Dueling all the very best.

Keziah all the best. Did I reply to your email or not, I am loosing track. I must look into it!

singsong10 welcome. I am not sure if I can exactly give advice (my family all think I LOVE to give advice) but as much as possible try and do two things: remove things from life that are added stress and not necessary and make fun, productive things part of life during this time. For example, try not to be doing any major house decorating/moving/planning a major event/moving job etc at this time. Having said that someone amongst us must have done one, if not all of these, during IVF and may say it is fine. IF you CAN'T avoid these things then really try not to stress about it, just do them to the best of your ability but try not to take on extra jobs/ chores etc at this time. Secondly, fun and productive, whatever you like, I am trying to lose weight and get fit by going to Rosemary Conley diet and fitness, it has certainly taken my mind off ttc! Other things might be to do some painting, writing, clay modelling, whatever you enjoy. Spend your time having fun, go out for the odd meal (if you can still afford it!) - I mean the occasional and not ODD food! I agree with poppy that TTC can take over so if you can help to hang onto your life, then do, by that I mean try to keep some parts of married/shared life the same as normal! Try to have a normal sex life (whatever that is!) and have fun and don't just talk about fertility (or the lack of it) all the time with DH/DP! Just my experience but men seem to find it easier to forget about TTC and sometimes it can help to just forget about it for a while. When we had our failed IVF we had waited so long for it and DH was planning some small trip or activity and I desperately wanted to say to him - if it is not about IVF I just don?t care! But I managed to stop myself from saying that, and try and enjoy whatever it was he was planning, and in the end I managed to. It is hard but sometimes it does help to keep some of life as normal, and as fun, as you can. All the very best.

Rowing I said 'Once we have seen the consultant and ordered the drugs for treatment we will be ready to go.' I meant we will see consultant and order drugs this month and be ready to go next month BUT we still have to wait until next year! What I think I meant was that if we get the drugs and are ready to go if we get a chance to start early then we can! Not that we were starting early. I think as they were talking about 10 months it is 10 months to completion. It was almost (not quite!!) two months ago that we joined the list so the actual treatment, as you know, can take ages (last time it took us two months from start of injecting to actual embryo transfer). So if you add that two months to the two already done and allow half a month for the two week wait, that is 4 and a half so we have five and a half months to go before we start treatment! I know that is ages but the drugs will take a couple of weeks to come through so sometime in that five months we might get a call to say we can start early! Wishful thinking! Wow, long-winded reply. I am just getting too eager!!

*Rowing you make some interesting points about innovation lacking, I wonder if it is because it is a sensitive area or because they think we will keep on paying and trying whatever happens. Some clinics may do research and some people seem to stand out. I am sure if we were all able to count back just on this thread the success rate would be good. I know so many people who seem to have come on this thread and got pregnant. But it does take time!

lateatwork I certainly know how you feel, and bagofholly about the difficulties. All I can say is that if it is successful it feels fab, my DD is a gem, and also that I am sure it will all be worth it for all of us, I so much hope so.

God Bless to all, we have joined a new local church and I feel very spiritually alive! So sending joyous beams out left right and centre, I hope!

OK back to lurking!

Chocolate boobs to all

i suppose i wasnt referring to the jeremy kyle set- i was referring to the general female population- like my sister, my friends- that didnt get pregnant in the jeremy kyle style, but just normal. they decided to have a baby and it happened. may have had to wait maybe three cycles but all fine n dandy...

yeah BB it is total shit. crappola. i must find something else to concentrate on.... am trying to get fit again. couch to 5km.

newbishad1 sure dont envy your journey home. try, where possible, to take any kind offers of assistance that will make any small part of it easier. nurture that little blast inside you!! Are you starting new job in Liverpool or back in Ireland? I really admire you for doing that. Its exciting!

lissy Dexter season 1? have i missed something again? oh and i like your mantra... agree with bb that it applies equally to eggs and men...

4kg is fab, well done, BB.

I'm feeling okay. I knew I wasn't pregnant, I really did.

Couldn't agree more about the whole getting pregnant easily thing. What I find really annoying is that I spent more than twenty years trying really hard not to get pregnant because I foolishly thought it was easy and also thought it was the responsible thing to do. If I knew then what I know now, I would not use contraception ever. So what if I had ended up with three kids by different fathers or pregnant at 17 or whatever? I honestly think that would have been better than what's actually happened. Three children or more would have been a blessing, whoever their fathers were. I'm so sorry that I wasted all those potential years of conceiving! My life would have been very different but I can't help feeling that the more children I'd had, the better it would have been. One child has enriched my life so hugely. Apologies if this sounds insensitive to those of you who don't have one yet (you WILL get there). I don't mean it to be. And I was you five years ago, I know how hard it is.

Ok, news update. Just got a call from the FC. They got three viable eggs, and two of them fertilized normally. ET is tomorrow morning. Trying to remain calm and zen-like.

Late--Dexter is an American series about a forensic blood splatter expert who is a serial killer, but he only kills criminals. Everyone I know (and their mother) absolutely loves this show, and it's on my BT Vision On Demand. Excellent distraction, as is Seinfeld...

Well done Lissy - hope you are well-rested and Zen is readily located. Take it easy and all good luck for transfer and the 2WW!