# Repeated IVF failure even with immunes. What shall I do?!



## Chocgirl (Oct 27, 2014)

Hi everyone,

Looking for some advice and hope from veterans. I have now had three fresh IVF (ICSI) cycles and one frozen. The most recent, now, was a BFN despite every immune treatment I could afford and two top quality embryos. Before that, I had a chemical on the fresh though the cycle didn't go very well and before that, an early MC after a few weeks with two frozen embryos which developed well HCG wise before imploding! My first cycle was a clear BFN.

I have yet to have my blood test which I'm dreading but I am 11dp3dt and previously have shown at 5 or 6dp5dt so holding out zero hope (despite many arguments with family over it who insist it isn't over yet. Don't they understand that I know my own body and I am just not pregnant! I have started spotting already and know it's just the progesterone holding off the period probably only until tomorrow).

We have one top quality 5AA embryo left. I have been seeking advice from Dr Gorgy despite NHS treatment and am going to see him on Monday. His office say he recommends frozen transfer practically straight away as it's beneficial to still have the effects from drugs in the system. This is the opposite of what the nhs say but their results are crap so I'm ignoring them!

Just really feeling panicky and miserable. Our most successful attempt was on a frozen round and I'm convinced if I had known about my immune issues by then and treated them I may have even had twins as my HCG was very high. I just can't understand why NOTHING happened this time?! Wondering if for some people doing fresh rounds just isn't right for them? I have been really sore after all my egg collections despite not getting loads of eggs. In fact I seem to get fewer eggs every time, though my AMH is good and apart from one disastrous round (the chemical round) where I barely responded and was chucked on a super high dose of Merionol which didn't seem to work for me, our embryos have been of fairly high or top quality.

Really would love some advice or encouragement! It scares me we only have one embryo frozen as I know they don't always make the defrost though hoping the quality of this one works for us and our previous two defrosted fine. I just don't know after that what I should do. I have read about a procedure in Athens where they scrape out your womb and put cuts in it which is like a mega version of the scratch. Should I consider Athens or Madrid over ARGC? Is it really a lot cheaper? I'm convinced a decent clinic could help me to stimulate better and get more quantity. Lifestyle wise I could not be doing more for quality!


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## ivyf (Sep 29, 2011)

Hi I'm so sorry you're in this place, I know it well. Assuming you're right and this cycle is bfn see what dr G advises and go from there. From your signature there's further immunes treatments you can try so it's not the end of the road. Dr g will tell you it's trial and error to see what works for you - that's frustrating and expensive but ultimately he's made it work for some of us who'd virtually given up xx


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## simone546 (Dec 25, 2011)

Hi Chocgirl

Think I may *know* you off IG - if not apologies - just similar story. I'm having treatment at FGA 

I'm really sorry for what you've been going through... BFN is a kick in the teeth, especially when you put som much into it.  

Have you had full immune checking with Dr G? It seems totally wrong to get such good blasts (I've never had as good quality as you!!) and for them not to stick  

I'm not sure what's worked for me so far... but I suspect the neupogen may have been useful.

I would definitely want to look into further testing before putting your beautiful frostie back.

xxx


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## Chocgirl (Oct 27, 2014)

Hi Simone, that's funny! What's your IG name? You probably do know me as I've been moaning away about my family the last few days, aha.

I have had the full panel of Chicago tests with ARGC (Gorgy then took over) and then he did loads of extra tests....I don't even know what they were to be honest but the only thing that's come back as an issue is my TNF alphas (and thus NK cells) were really high. My NKs weren't too high but high. I then got them retested and then were within normal range. And my thyroid was a little high too but now totally fine. So I guess having not had this info for the first three rounds, this was the first round where I had that under control and yet less happened than ever before! Could it literally be bad luck??

What does neupogen do?  

I don't have thousands to spend on further testing unless its really necessary. I'm not even sure some of them I believe in, like hidden C. Surely the treatment would just be antibiotics? I am going to ask him if it's worth preemptively doing two weeks of antibiotics.....xx


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## Chocgirl (Oct 27, 2014)

Simone what is PUL?


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## Chocgirl (Oct 27, 2014)

Hi Ivy,

See my above post. What happened with your hidden C and any other tests you did - did anything come back?

I can't afford to do everything so trying to see what I could be preemptively treated for. I have had really loads of tests - I spent about £3000 - I'm not sure what else there is which is realistically an issue. What do you think made the difference for you? Donor eggs?

I really don't want to do donor eggs unless someone tells me there's something up with mine which they haven't so far! Otherwise I would jump on it!

Feeling so lost that the one round where I had everything under control literally nothing happened. The only difference was this time there were only 3 eggs and so they put them back at day 3 rather than day 5. At the time, our 5AA frostie looked like the worst of the bunch so when they told us he was the tops we were like great, the ones in there must be magnificent! ha! Is it possible for them to just conk out on day 4 when they look great on day 3?! x


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## simone546 (Dec 25, 2011)

Chocgirl - I'm ivf_hope_love  

Neupogen is for missing KIR receptors... but it seems to be used more and more for other stuff too I think.
PUL - pregnancy of unknown location  

I'm super sceptical about a lot of stuff to do with medicine (I have a science background)... but I had the full hidden c test. I tested positive for ureaplasma and hidden c.... had a month course of antibiotics and it had a gone on retest. Interestingly my AF changed after the antibiotics... was less brown and clotty (sorry tmi). I def believe in testing for the ureaplasma (though I don't think NHS normally tests for that) not so sure about the hidden c.

xxx


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## Ms G (Aug 4, 2014)

Hi Choc girl. 

Just a thought. Have you looked into IMSI? Maybe worth a chat with your consultant. I know you have had ICSI for your cycles. We had ICSI for the first two fresh and 1 FET. Zilch from 4 embryos being transferred. You can see our history in my signature. This time we had IMSI and the embryologists told us that we have a lot of grade 2 sperm. These could get to blastocyst and then not develop into a pregnancy. We did change a lot for our last cycle so it is hard to say what helped and we haven't yet got our happy ever after. I'm convinced that the IMSI was the biggest factor in at least getting us a BFP. All this time, we've probably had the majority of eggs fertilised using grade 2 sperm. 

I hope it works out. It's tough to keep going but there are lots of ladies on here who have persevered and eventually had success. 

It will work for us too!


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## Hopefulshell (Mar 14, 2013)

Hi 

Sorry to read of your tough journey so sending you a hug.

Have you ever considered testing the embryos? As I'm sure you're aware, what looks perfect under a microscope doesn't always have the potential to develop into a full term baby. Apologies if this is something you've already considered. I had two frozen embryos put back on my last FET - one a 5AB  the other a 4AB. Both stuck but only one continued to develop. I have immune issues too and always assumed it was my 'environment' that was the issue. The loss of one before the 7 weeks' viability scan strongly suggested it was the embryo that wasn't viable, not my womb ...

Although you mention you've been treated by Dr G did he recommend when to take your drugs or was it your NHS clinic who told you this? Only asking as there is some debate as to the timing of certain meds especially steroids. 

I'm so sorry for the pain and frustration especially when you've spent so much money already on immune tx. It is like another kick in the teeth when you've tried so hard to find the answers. Although medically I can see the merit in doing a back to back cycle, I'd just caution rushing things too soon as you need time to recover emotionally before heading straight back on the rollercoaster.

I hope Dr G is able to suggest an alternative - I'm sure he will.

x


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## maybebaybee (Apr 17, 2016)

Hi Chocgirl, sorry to read your frustrations and hope you are able to get some answers. But first, fingers crossed that you're wrong this time and the bloods will show a BFP! 

Regarding the hidden-C test, I would recommend it. Compared to all the other tests you do, it's not invasive and it's far less expensive. I had the hidden-C plus 7-in-1 and I think the total was 270 Euros. All came back negative, but many gals have had positives. Penny treats both you and your OH with antibiotics for a month, because it's the kind of infection you can be passing back and forth without knowing it.

I also had the hysteroscopy with implantation cuts. Yes it's much more than the scratch, particularly since it's done under sedation. They gave me a DVD showing what they did, because they use a camera to see what they're doing. I had a lot of cob-webby dead tissue from old cycles that they said was blocking implantation, so they scraped that out. Then they made cuts in the lining of the uterus to help with blood flow. When you have a scratch, they're not using a camera so they can't make deep cuts. Two months after the hysteroscopy with cuts I cycled with Serum and am now just shy of 7 weeks with my first ever BFP.

As Hopefulshell says, embies that look good under the microscope could still have chromosomal abnormalities. We did consider testing embryos but decided it's not for us. You may decide differently. Have you and your spouse had karotyping done?


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## ivyf (Sep 29, 2011)

Hi if immunes are the issue de won't help so I'd stick eith yours if they're. My hidden c test was + and I had anti bs but the cycle that worked I also had intralipids, neupogn, humira, steroids and LIT with humira being the new addition.


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## Chocgirl (Oct 27, 2014)

Hi everyone,

Just wanted to say thank you for your suggestions and responses. So I have now had DQ Alpha testing and LAD with my partner. Dr Gorgy basically said I will need LIT which sucks as it's expensive and I guess could take 2 months until I can start my FET. We will get our results two weeks today then I hope have the first LIT as quick as poss!

I have also requested a recurrent miscarriage panel from my GP as well as karotyping, Factor 5 leiden gene and MTHFR (though I actually think I already had the latter). It was a bit of a faff but they've agreed the the recurrent MC panel and hopefully now I gave them the letter of approval will agree to the karotyping and genetic testing.

I'll keep you posted on the results. We only have one frostie so won't do PGS on that. Plus to be honest it's so amazingly expensive, hope if we have any major genetic issues they should show up with all these other tests.

I do like the sound of the implantation cuts thing but it sounds like a lot of work and they don't even do that in this country so wondering how necessary it can be! I guess if we have to do a fresh cycle again we will consider Athens as an option.

Thanks xxx


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## Lilypink (Oct 8, 2013)

Hi chocgirl
Your story is very similar to mine ( although Iv not actually achieved a BFP yet )
We have had 5 ET's all with 5AA / 5BB embreyos ( 7 in total ) and not one positive test.
Been tested through Gorgy - nothing 
Cycled with immunes - nothing 
I am entitled to an NHS cycle which I'm starting early 2017.
They are PGS testing for me for £2000 which is really cheap compared to on a private cycle. I've just come back from seeing embreologist who has said although my embreyos always looks top quality they may not be 'normal' chromosomes 
She said most early mis carriages are to do with chromosome issues. 

If you have a cycle with NHS it may be worth asking? 

X


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## SryGrl (May 22, 2016)

Hi,

I just want to add that if you have one or more blocked fallopian tubes, this could emit bacteria into uterus that is fatal to embryos, cutting your chance of implantation with IVF by 50%. This is called hydrosalpinx. Options to deal with this include removal of fallopian tubes, clamping of tubes, cleaning out of tubes (impact is temporary) or taking antibiotics such as Doxycycline for a few weeks around the time of collection / transfer. Hydrosalpinx is supposedly the culprit in about 20% of women with multiple failure to implant. There is a section on FF for tubal issues under diagnosis.  Also, Agate has a great thread mentioning lots of things to consider covering egg/sperm quality, implantation failure and multiple MC.
I just learned about hydrosalpinx and am going to do one more frozen transfer taking antibiotics for longer period; if I get a BFN, I'll proceed with the removal of my tubes (which I found out are blocked when I had a hysteroscopy in Athens). 

Best of luck!


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## miamiamo (Aug 9, 2015)

Chocgirl - I am by no means an expert, but in case of implantation issues, you might consider doing ivf with PGS NGS Good luck


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## Chocgirl (Oct 27, 2014)

Hi ladies,

Thanks for the suggestions. 
Miamiamo - I know about PGS but not NGS? Problem is we get few eggs though my AMH is ok. So the thought of damaging them with PGS makes me nervous. Plus the cost seems insane. I think I would consider it for another fresh cycle - IF we got enough eggs. Part of me thinks if they're good enough to transfer or freeze I would just find out if it worked or not and save my money for more cycles. We won't keep going forever so if they are ALL abnormal then that's what they are. I don't know, wish I was rich!!! It's something to consider...
Srygrl, my tubes were fine when they were checked. I guess that was about 18 months ago or so. I do have a course of antibiotics I'm going to take in the next few weeks, two a day for 10 days. Wouldnt I have shown up if I had blocked tubes....?
Lilypink I'm surprised the NHS are cycling you after private treatment? Our one private round we did secretly as NHS wouldnt treat us if we had ANY private IVF!! We have no more rounds anyway but as I mentioned above, it's a possibility in the event of more eggs...you have had the same amount of embyros as me!! I have shown immune issues though but BFN with all the treament, just wondering what's going on!

I just got my DQ alpha results if anyone knows how to interpret these?!! Got a follow up with Gorgy on friday when I am sure he will say to do LIT. bLEUGH.... XXX


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