Wednesday, 17 July 2013

Unexpected answers, unwelcome delays

The results of my Yale Endometrial Function Test (EFT) are in.  I knew the second that my RE launched into the "so this is what we're testing for..." speech that something was up.  Otherwise she would have just said everything was fine.  So what's the verdict?

First, some background.  The EFT is an experimental test that is pretty much still research at this point.  It tests various secretions made by your lining which are essential for embryo implantation (if you're really science-y, read all about it here).  For the rest of us dummies, Yale's Dr. Kliman compares it to a surfer riding a wave.  Your lining is made up of two parts: the glands that produce the secretions necessary for implantation, and the stroma which is the connective tissue that holds the lining together.  The glands (the surfer) need to develop in sync with the stroma (the ocean) to catch the wave and create the proper conditions for implantation, or else your cycle is just a big fat wipeout (OK, I added that last part). 

Back to me.  While my progesterone levels were right on target for CD24 (test day), it turns out my glands were mildly out of phase with the stroma.  As in, according to my stroma it was CD24, but my glands were acting like it was CD18.  Lazy bastards.  The final diagnosis: moderate glandular/stromal asynchrony.  Translation:  fucked up lining to go along with my fucked up eggs.  Treatment: two months of Lupron-induced menopause to reset my system and hopefully have things sync up.

 
Me either, Liz.  Me either.

So here are the fun facts.  My RE is recommending proceeding with a new IVF cycle ASAP, given my ever-diminishing ovarian reserve.  We would tweak my protocol to use estrogen priming instead of birth control and Suprefact instead of Orgalutron as an ovulation suppressor, as apparently some women produce better eggs on Suprefact.  Which is important, as my RE helpfully informed me that I was wrong in thinking that I had only 30% normal eggs last time.  I apparently misheard.  I had 13% normal eggs.  Which, out of the 8 mature eggs I had, is exactly ONE.  I assume it's the one that made it to blast.  Wow, this appointment just keeps getting better!

Anyway, following the egg retrieval we would do another "freeze all" on Day 5.  This sucks, as I was planning on asking for a Day 3 transfer this time around based on the fact that the idea of having nothing to transfer is really, really horrible.  And as much as my clinic is convinced that they're perfectly mimicking the inside of a uterus and that if an embryo doesn't make it to Day 5 in the lab, it wouldn't make it inside me, I'm starting to think differently.  In my time blogging I've seen too many stories of women with dodgy-looking embryos on Day 3 that no one thought would make it to Day 5, who went ahead with a Day 3 transfer and got pregnant.  But it looks like I won't get the chance to try out that theory.

Following the IVF cycle I would do two months of Lupron depot shots to send me into joyous menopause and reset my uterus.  The problem here is that the Yale EFT is not conclusive, and in fact some REs online seem to consider it complete bunk and have said they would never do the Lupron treatment after an abnormal result.  Also, the EFT isn't able to pinpoint any specific reason behind the lining abnormalities.  It could be anything from an endometrial infection (my biopsies are always clear) to a hydrosalpinx (my tubes are fine) to endometriosis (no sign of this as I've never had any pain with periods) to a too high/too low BMI (I'm normal) to perimenopause (well, DOR, so duh...) to stress (boy howdy!).  Also, my Google-fu appears to be failing me right now as I've been completely unable to find any anecdotes out there where people had success after Lupron treatment for an abnormal EFT.  There are no failures, either.  There's just...nothing.

I know I should be happy that I've found a possible answer as to why our decent-looking blastocyst failed to implant last cycle.  But honestly, it just feels like yet another kick in the ass.  My fried eggs won't stick to my teflon uterus.  Really, is there ANY part of my reproductive system working properly?  No?  Then why are we even bothering with all of this?  And now we're looking at an IVF cycle (August/September) followed by Lupron (October/November) which means we're into Christmas and 2014 before another FET, if we even have any embryos at all.

FAAAAAAAAAAACK.

30 comments:

  1. Gahhhhh!!!! I was excited to hear when you got your results back, but I feel sorry that they weren't great news. Sometimes I wonder if we just know too much. How many women who get pregnant naturally have slight issues they never know about? What I mean is, how much does each factor cause a failed IVF as opposed to plain bad luck?

    Hope your new protocol brings you your take home baby, I am excited to read about it and to cheer you on!

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    1. I've wondered the same thing about people who aren't being tested for all this stuff. How abnormal are we, really? We're always just comparing to other infertiles, so who knows?!

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  2. Wow, that's crap. Hearing something like that would completely send me over the edge. Im with Gypsy Mama, how the f@#* do people ever get pregnant outside of the lab when there are so many things that can go wrong? I am wishing you peace and patience during this time.

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  3. Bah, sorry about the bad news, one is less pleasant than the next.
    Does your doc/clinic have solid (and positive) experience with the post-EFT-Lupron treatment? Or is it more along the lines of "well, in theory this should help, so let's try"? The situation seems quite frustrating. Hang in there -- I hope this cycle brings you a 2014 baby!

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    1. I'm not really sure how much experience they have with it. I know I've seen message boards where others have gone through it with my clinic, but have no idea of success rates afterwards and I doubt they really compile them that way. I can always ask. I briefly asked my RE if she thought we shouldn't even bother with another IVF, and she was pretty vehement that we should, so I assume she thinks this will work.

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  4. Thanks for the link! Always interested in learning about new tests that look at endometrium and implantation issues.

    Your post reminds me of Hapa Hopes's 3 months on Lupron. Was not a fun experience for her, but it did make a difference. Who knows that maybe it's just a matter of resetting things. . . . At any rate, I know all of this is frustrating and overwhelming. But keep in mind that even though it seems like we know a lot, there's still a lot we really don't know. Hence focusing on this in pieces may actually be a good thing as first you can focus on generating good quality eggs and later you can focus on growing lining.

    Hang in there. News like this is always mixed. But I'm hoping.

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  5. jeeeesuschrist, friend. what a confusing and frustrating position to be in. don't take the treatment and your transferring sooner. do take it, and you have a chance to maybe solve one of the issues going on. or possibly going on, since the opinions appear to be mixed. i can't stand it when the internet says nothing in response to a question I ask it. it's supposed to be all-knowing. faaacker.

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  6. I'm so sorry. All of this is so horribly frustrating! What clinic do you go to? I don't know anything about that test. But CCRM does a test called Beta Intregin 3 which tests for the missing protein that is the "glue" for implantation. I'm testing for it in a few weeks. If it's missing, my doc will treat similar to your situation....freeze all and 3 month of Lupron Depot shots before the transfer. I have another friend who is doing this protocol now. She retrieved in June and will transfer in early Sept. If you want, I can let you know the outcome.

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    1. I'm at a clinic in Toronto; I think they have a research partnership with Yale. I looked up the CCRM test, and apparently it's patented so you can only do it with CCRM. I doubt we'll ever have the resources to travel that far. But you never know! That's really interesting about your friend. Please keep me posted on how it works for her!

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  7. I'm sorry that you got such crappy results, but look at it this way. Like you said, you can't find any failures online, so it doesn't look like doing the Lupron treatment could hurt. I know it sucks having to wait even longer, but you never know, this might be the missing piece to the puzzle that you need. I am truly sorry that you have to make such hard decisions.

    I swear I know of another blogger who has had to do the Lupron treatment, but I can't remember who it is right now. I'll search around and try and get back to you with a name.

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  8. I am truly hoping that this protocol will be the difference you need.

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  9. *sigh* So sorry about the crappy uncertainty. You know.. my RE never recommended BCPs for me b/c of the fear that my ovaries would be too suppressed. She doesn't even recommended estrogen priming. But I've been seen a lot of DOR ladies who have done EPP and had good results. It stinks to have to wait though. I just hope that this is the answer for you.

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  10. I just started to follow your story, and I'm really rooting for you! I too, have lining issues. Boo to that! It sounds like your RE is being proactive and this next phase sounds like a positive step in the right direction so you can have your dream!

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  11. Blah, this is frustrating. I'm sorry that your answers spurred more questions, and also hopeful that this new protocol works for you. At least it's something different? I always think about that quote that the definition of insanity is doing the same thing over and over and expecting different results. I don't know if it really applies to infertility treatments since even the slightest, infinitesimal change can be the difference between a BFN and BFP.

    Rooting for you, as always.

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    1. I love that quote about insanity. M pulls it out a lot. I really hope he's right about it in this case!

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  12. How frustrating--isn't waiting the worst? I did the estrogen priming protocol and it didn't work at all, but when I tried the microdose Lupron protocol it worked great. Sometimes these little tweaks can have great results. Fingers crossed.

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    1. Hmmm...my RE has never mentioned microdose Lupron to me. Going to have to keep that one in mind in the event we end up needing another cycle!

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  13. I'm so sorry Aramis! What a pain. And I have to say that "My fried eggs won't stick to my teflon uterus" made me practically pee my pants. You are brilliant!

    I will say that I take everything Dr. Sher says with a grain of salt. He almost never quotes any studies, and he doesn't publish much in the medical literature. He also doesn't provide any of his own clinic's stats (using his objections to the flawed SART data collection process as his excuse). If your doctor thinks the Lupron restart is a good idea, I'd trust her over Dr. Sher...

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    1. Interesting point. I love having a scientist weighing in, as I didn't know that about Dr. Sher. Also, I tried to find an animated gif of someone sliding fried eggs off a teflon pan to illustrate my point, but failed. My Google-fu was really off yesterday!

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  14. I'm sorry you didn't get the answer you were looking for from this test. And that things are going to be delayed. That's never fun. But maybe changing things up will result in just the right combination to get you good and knocked up!

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  15. *sigh* I'm sorry that you didn't get some good solid answers from both your dr's visit and Dr. Google. But I am crossing my fingers that this retrieval/Lupron/transfer is the protocol that works for you!

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  16. I am sorry that the results feel so disappointing, but I'm hopeful that this will give your RE insight into why there was no implantation last time. As a scientist I always feel like a little information can help to fill in some blanks and help you get to where you want to go. They always say that in research you don't fail, you find something that doesn't succeed and unfortunately IF is a lot like that still. Hoping that you have a really successful IVF with lots of eggs. And that you will be snuggling a 2014 baby.

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  17. Well, it sucks that they found something "wrong" (I agree with the people who commented about finding things wrong-- I'll bet even those fertiles don't have perfect numbers on EVERYTHING). But, it does give some hope that this could be the missing piece to the puzzle. I hope December turns out to be a wonderful month for you!

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  18. Ugh. It sounds like these test results just brings up more questions. sorry. It sucks on so many levels. I hope this new protocol does the trick.
    My RE actually agrees with you about day 3 transfers. If there aren't many embryos and he isn't sure if any will make it to day 5, he said he believes the best place for them is inside the uterus and that some that may not make it in the lab could make it in their natural environment. Obviously, there is no way to test it and each RE has their own beliefs.

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  19. Wow I just learn something new everyday reading these blogs. I like the wave analogy of explaining EFT. I have never heard of that stuff. It's kinda sucky news, but hopefully there will be a fix and you will have success. Hoping and praying for you.

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  20. Sorry, I'm so late in posting, but it's been a really busy week for me! I met Dr Kliman when I was working in Connecticut (this was 2004) and he did a presentation on endometrial testing. As a background, he explained that he was one of the few researchers to examine placentas and products of conception from miscarriages. He reported his findings and had some stats on women who had conceived after many failed IVFs after going through treatment. (In regards to treatment, the Beta Intregrin 3, that Jessah mentioned sounds familiar -but I am trying extract from nearly 10 years ago!) He (Dr Kliman) sounded really optimistic that this testing would be the standard of care for all women going through IVF (of course, he also has a patent on it). So why isn't it? I don't have any answer, except, yes there is very little on the internet. I did a medscape search and just found one article that discussed endometrium and IVF, which I emailed to you. I've thought about asking my RE about it, but I anticipating a suppressed eye roll, I've held off, but I can ask at my next visit and share another RE's thoughts.
    I had a similar situation when I went for my saline infused ultrasound, and anticipated I'd get the 'all normal!' pat on the head, and was surprised when my septum was confirmed. As mine was relatively small at 30%, there is debate about what to do with it. At the conference I attended last fall, almost every RE agreed that a septum of 50% or more needed resection, but some were hard pressed to remove a smaller septum, knowing that there are many women out there with septi and have normal pregnancies. My RE was decisive in his recommendation to remove and he described 'it's just something else that could cause a problem'. The question I had to answer, was what did I have to lose. He could really fuck up the surgery and damage my uterus. I asked a few doctors at the hospital where he operates and heard reports that he seemed to have decent surgical skills and it's a straight forward procedure. In your case, what would be the downside of the long lupron protocol (i.e. why were some other RE's against doing it? is it because they don't feel it's necessary, or because it detrimental) IMHO (and this is also a non-medical opinion) it doesn't seem like the lupron strategy is too different to protocols for a regular transfer in terms of trying to appropriately sync up the endometrium,

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    1. I went to email the article and found that it's not too helpful, just discusses more about fresh versus frozen transfers

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  21. Argh! I got all excited at first, seeing that there might be some easy "HERE'S THE ANSWER TO ALL YOUR PROBLEMS" results from the EFT, but reading through your post, it does in fact appear more complicated/frustrating. I just assumed (from how my RE described it) that whatever the EFT revealed was easily treatable. But this whole Lupron protocol just seems like a bit of a "taking our best guess" situation.

    Still, I would try to take solace in the fact that you CAN produce eggs that make it past three days, and you have identified what could be the exact reason nothing has implanted so far, and there is at least SOME kind of treatment for this. It's going to be hard going into the next round and having to freeze/thaw again and having to stay on Lupron for so long -- it will really, really suck -- but if the medical opinion is to give it a try, you just have to trust that it's worth it.

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  22. Sorry to hear that you had a "here is another thing wrong" kind of appointment. There's just no way to get used to those. :-( After hearing bad test results I feel like nothing more than a old jalopy car that's bound to come to pieces on the road anytime. But at least I'm glad to hear you have a plan, even if it's not an ideal plan. hang in there!

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  23. I haven't done the EFT test, but I have done the whole Lupron thing before our last two transfers, which both resulted in positive pregnancies. That probably doesn't help, but for what it's worth, I have at least experienced the Menopausal Lupron injections.

    I also want to say - YOU ARE A FUNNY GIRL! this is such a serious topic, and yet, you can make me laugh through your writing. I love your Queen pic, followed by your comment.

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I'm needy and your comments validate me. Help a sister out!