IF Testing and Treatment w/o 10.4

inthewoods23

This is a place for those of us who have already started TTC, but have started infertility testing and/or treatments. You can express your thoughts, feelings, and frustrations on infertility. TTC can be a long journey naturally, then add in the difficulties associated with infertility, and it becomes a whole new ball game. The road to infertility can be lonely, frustrating, and complicated, so let's make this a place where we can vent, ask questions, and support one another. Feel free to resurrect this thread at any point in the week if you have something to say. Treat this as an ongoing conversation.

Diagnosis (if you've been):  

Status (WTO/TWW/TTA):  

What are you doing this cycle? (Testing? Treatment?):  

How are things going?:  

Any questions?:  

GTKY: What's the best Halloween costume you've worn?

optimistgardener

@inthewoods23 man, my phone has decided on all kinds of dangerous things for my autocorrect thanks to this infertility nonsense.

@keikilove sending a little ❤️ your way. i hope your husband is managing his chemo ok.

Diagnosis (if you've been):  the usual stuff. AMA, one cantankerous old ovary, endo maybe, previous surgeries

Status (WTO/TWW/TTA):  benched so hard. but also technically in TWW

What are you doing this cycle? (Testing? Treatment?):  I finally feel legit posting here this week because i'm in the midst of such verifiably next-cycle-prep related things as 1) getting my new insurance and referrals all back into place so i can, i hope, actually use my fancy new fertility-friendly policy, and 2) ordering a new batch of frozen sperm (so I'm back in the trenches with all the profiles, trying to decide if i prefer the sweet-sounding fellow with bad eyesight or the egotistical-sounding one with the spic-and-span family medical history, etc.).

How are things going?: The insurance set-up stuff is so freaking annoying. I'm actually staying with the same major insurance company even though I'm shifting from a crappy individual policy to a fancy one, so you'd think it would be straightforward to sort out my information, but no. Also I'm crazy crazy busy with teaching stuff but in a way I guess it's encouraging me to get this bureaucratic stuff out of the away as fast as possible so I don't have to think about it.

Any questions?:  NATM

GTKY: What's the best Halloween costume you've worn? This question makes me feel like a really lame person. I can't even remember my last halloween costume, let alone which was the best. as a child, i was a cat for multiple years running, which, apart from the obvious black leotard, tail, and face-painted whiskers, also for some reason required that i pinned an image of a cat to my chest, like a medallion of the self. i loved it.

bumblebee0210

@acleverusername. Thanks for the embryo info!! That was also sort of my sense. 

Diagnosis (if you've been):  RPL, DOR

Status (WTO/TWW/TTA):  WTO (Stim day 8)

What are you doing this cycle? (Testing? Treatment?):  ER #6, Standard Antagonist, part 2 of duostim

How are things going?:  Not great! Looks like whatever miracle happened last cycle will not be carrying over to this one. Stats in spoiler

On stim day 7 (yesterday), my e2 was a sad, sad 152 (up from 96 on day 5). I had 4 measurable follicles-- 2 on each side-- and 7 or so littles, very few of which were close to catching up. This is the lowest my estradiol has ever been, incleding the cycle in which we only got 2 eggs and neither fertilized, so I do not have high hopes!

I am basically hoping that we will get 2+ normals from the 5 we have out for testing now, and we won't need the ones from the second half of the duostim...

Any questions?:  So my clinic does not regularly do duostim, and at my last retrieval, the doctor explicitly told me that she "drains everything" to try to get as many eggs as possible. I'm wondering if that means my little ones too, and that could have affected my results this cycle?

GTKY: What's the best Halloween costume you've worn? MH and I did a really great Jack and Sally from the Nightmare before Christmas one year. 

gingermama29

@bumblebee0210 aww I’m sorry the news isn’t good. Crossing everything that you get your normals from the ones currently being tested. Sending hugs!

Diagnosis (if you've been):  PCOS

Status (WTO/TWW/TTA):  WTO 

What are you doing this cycle? (Testing? Treatment?):  NTNP

How are things going? Things are good. I mentioned in the dailies on Friday that I had a zoom date with my cousin who has both gone through IF treatment and had losses and is actually an IF therapist and works with fertility clinics across the country. It was great to catch up with her and discuss my IF struggles and hear about hers. Discussing with family who understood exactly what I was going through and how it felt was very cathartic. She gave me a lot of great advice and some resources for IF including support groups, and gave me lots of things to think about and discuss with DH. I’m feeling good about everything going into my first appointment and hope the time flies between now and then!

Any questions?: nope. Thank you @acleverusername for the resources for questions to ask at a first appointment!! Those were incredibly helpful!! ❤️

GTKY: What's the best Halloween costume you've worn? Ooh that’s hard. I did a group costume with some teachers a couple years ago and we all dressed up like a rainbow pack of expo markers. That was really fun! 

walkawaynee

@bumblebee0210 sorry the 2nd half of the duostim isn't going as well as hoped. FX for a good amount of normals from testing. 

@gingermama29 so glad you got to talk with your cousin and got resources! I don't have any friends that have been through IF and really wish I had someone to connect with. 

Diagnosis (if you've been):  AMA, DOR, low morphology (2%)

Status (WTO/TWW/TTA):  WTO 

What are you doing this cycle? (Testing? Treatment?):  technically NTNP

How are things going?:  overwhelmed and disappointed today, AF came yesterday and I was supposed to start BCP this cycle to prep for IVF but the nurse messaged me today that they want to wait until next cycle to start BCP. I was so ready to move forward that I just feel off now that its delayed, trying to decide if we NTNP or TTA this cycle. I have had zero pregnancies since TTC this time so I feel like it probably doesn't matter. 

Any questions?:  I have a consult with the IVF MA this week. Any questions you suggest asking? What is something you didn't think to ask and wish you had? 

GTKY: What's the best Halloween costume you've worn? I have a Rockford Peaches costume that I love, it's always my fallback if I need a costume and didn't plan. 

bows22

@bumblebee0210 ugh, crap. I too will keep my fingers crossed that last cycle continues to bring you great news ❤️

@gingermama29 I’m so glad your session with your cousin went well! It was probably a little weird to be so open with family if you have been keeping it private for so long? But I’m glad it felt good to get it out there and that she was so helpful! 

@w@walkawaynee ugh I’m sorry for AF and for
the delayed treatment cycle. Why do they want to push it?

Diagnosis (if you've been): unexplained,AMA,endometrial polyps/thickening

Status (WTO/TWW/TTA): WTO

What are you doing this cycle? (Testing? Treatment?) Clomid + IUI

How are things going? Good! IUI is going to be tomorrow morning. I’m excited but not overly hopeful. I’m not pessimistic either but it’s just like - we’ve been unsuccessful for so long that it’s hard to picture it going differently? But I know that we have a better chance now so I’m sure my hopes will get up there eventually. 

Any questions? Just curious if anyone else has done IUI without a trigger, how your office handles IUI timing. I think I’m okay for this cycle but just curious for the future. 

GTKY: What's the best Halloween costume you've worn? I don’t know if this was the best but it was probably my favorite. When I was in my 20s I dressed as Wendy (of the fast food Wendy’s) just for bar hopping. I found a shirt at goodwill that was blue & white striped with a collar and bought a red wig with the braids. My favorite part about my costume is that I went to a Wendy’s and asked for an empty drink cup/lid to carry with me and I used that as my purse!

optimistgardener

Ok, I don't get it. For some reason the powers that be don't want me to post this update (which doesn't seem terribly controversial?). Apologies in advance if it winds up double-posting.

@inthewoods23 man, my phone has decided on all kinds of dangerous things for my autocorrect thanks to this infertility nonsense.

@keikilove sending a little ❤️ your way. i hope your husband is managing his chemo ok.

Diagnosis (if you've been):  the usual stuff. AMA, one cantankerous old ovary, endo maybe, previous surgeries

Status (WTO/TWW/TTA):  benched so hard. but also technically in TWW

What are you doing this cycle? (Testing? Treatment?):  I finally feel legit posting here this week because i'm in the midst of such verifiably next-cycle-prep related things as 1) getting my new insurance and referrals all back into place so i can, i hope, actually use my fancy new fertility-friendly policy, and 2) ordering a new batch of frozen sperm (so I'm back in the trenches with all the profiles, trying to decide if i prefer the sweet-sounding fellow with bad eyesight or the egotistical-sounding one with the spic-and-span family medical history, etc.).

How are things going?: The insurance set-up stuff is so freaking annoying. I'm actually staying with the same major insurance company even though I'm shifting from a crappy individual policy to a fancy one, so you'd think it would be straightforward to sort out my information, but no. Also I'm crazy crazy busy with teaching stuff but in a way I guess it's encouraging me to get this bureaucratic stuff out of the away as fast as possible so I don't have to think about it.

Any questions?:  NATM

GTKY: What's the best Halloween costume you've worn? This question makes me feel like a really lame person. I can't even remember my last halloween costume, let alone which was the best. as a child, i was a cat for multiple years running, which, apart from the obvious black leotard, tail, and face-painted whiskers, also for some reason required that i pinned an image of a cat to my chest, like a medallion of the self. i loved it.

kiki047

I had told myself I was just going to lurk some more but with my F/U appt this week I'm slowly losing my sanity so here I am. 

@inthewoods23 hilarious meme to kick off the week. My phone is constantly autocorrecting stuff to HIO, IUI and IVF... 

Diagnosis (if you've been):  PCOS, RPL/RIF, mild MFI 

Status (WTO/TWW/TTA):  TWW 

What are you doing this cycle? (Testing? Treatment?):  Awaiting test results from repeat RPL panels, immune testing, saline sono, and I think he did an endometrial biopsy while he was in there but now I'm not actually sure. 

How are things going?:  Ehhh. Thank you to those of you who have reached out to ask me this same question and who got the same "ehhhh" answer. *TW* It's PAIL awareness month and seemingly also feels like it's the month where everyone is pregnant. In the last 2 weeks I've declined invitations to two baby showers, saw 4 pregnancy announcements, 2 birth announcements, and SO many posts about PAIL awareness... and like, the last part is great because that's the whole point of raising awareness because I am one of those people #1in4 but at the same time it is so triggering. Especially those who are PGAL or who go on to talk about their wonderful rainbow babies. I have some good moments but overall I'm really not ok. I had a good session with my therapist last week though, and my homework this week is to do a few things for myself that feel "rewarding", even though I don't feel like I've "earned" the right to reward myself for anything. So whether that is buying myself flowers, or buying a cake for no reason, or just allowing myself to drink the wine (done and done)... it's an exercise in combatting some of the self-loathing that comes along with RPL/IF and not trusting or feeling safe in my body anymore. 

Any questions?:  Not yet, might have some after our appt on Thursday but we'll see how that goes. 

GTKY: What's the best Halloween costume you've worn? Ohhh this is a good one. We host an annual Halloween Party at work every year so I've had some pretty good costumes over the years. Spoilering in case these are gigantic. I cropped my head off in most of them too lol. I like being "things" and not actual characters. You'll understand when you see it... 

I have to say, most of these are a result of a very last minute scramble to throw something together. Like the time I went as a literal tea bag. 




For this one, two other friends dressed up as two of the other Marc Jacobs perfume bottles and we went out like that. 



I think this is my favourite, but lots of people didn't get it lol. 



God this was back in 2009 maybe? I reused these costumes several times. Technically I was a Hershey Hug (in gold) but this had more impact. 

kiki047

@bumblebee0210 your theory about your RE possibly draining off the little ones could be a valid one. Especially if it's not something she does very often. 
@gingermama29 that's so wonderful that you had a good chat with your cousin and you have someone else IRL to talk to. I love group Halloween costumes, that sounds super cute! 
@walkawaynee ugh, that's such a bummer about your cycle being pushed. That would throw me off too. I feel you on the attitude of "it doesn't even matter since I've proven not to be able to get KU naturally anyway", yet I continue to torment myself with SS and believing I'm going to be a magical unicorn just as I'm going into an IVF cycle. I actually prefer to be on BCP when that's the case (even though it makes me koo-koo-krazy). 
@bows22 I am so freaking excited for you that the day is finally almost here!! I used a trigger for my IUIs so not sure about timing. I refuse to give my body even one iota of leeway in case it decides to f*** everything up.

inthewoods23

@kiki047 your costumes are amazing!!! I love your ideas and any costume that is a thing, play on words, etc. We used to do costumes on Halloween at work and one of our engineers was dressed in a blue turtleneck with an old phone cord around his neck like a necklace with one of those plastic squeaky chickens tied to it.

His costume was chicken cordon bleu. Just, bravo! lol

gingermama29

@walkawaynee sorry about them pushing your cycle. Did they say why they wanted to wait??

@bows22 it wasn’t too weird. I’m generally pretty open with my immediate family about my fertility struggles but it was definitely nice to talk to someone who really understood what I was going through. I’m keeping everything crossed for your IUI tomorrow!

@kiki047 ugh I agree that I feel like I’m seeing pregnancy announcements everywhere and it definitely stings more in relation to PAIL awareness. I love your homework from your therapist! I hope it helps combat some of those feelings you have. Also your costume was awesome!

inthewoods23

@optimistgardener how exciting!! I'd love to hear what's on the profile that you do chose to pick.

@bumblebee0210 that really sucks that things aren't looking as great this cycle. Is there any benefit to just calling it quits on this one and doing a start over like a fresh new IVF cycle? As far as I'm aware, I think they do (or are supposed to?) drain every single follicle to make sure they get every egg possible. Maybe if you do another Duostim round have them not drain the smallest ones? How many more rounds are you considering?

@gingermama29 that's great that you had a good talk with your cousin! My mom used to be a teacher helper around my elementary school back in the day and I know a couple of them dressed as different color crayons. So fun 

@walkawaynee did they give you a reason for waiting another cycle? I mean it's starting BCP for pete's sake! I had to look up Rockford Peaches. Did women baseball teams really wear skirts for their uniforms?! I'm assuming they had shorts underneath but man.

@bows22 that's how I feel sometimes too. Like why would I expect a different outcome even though we're doing something different for TTC. Keeping my FX for this IUI!! This has been months in the making!

@kiki047 I haven't seen anything on my feed yet, but yeah I think I might have the hardest time with the rainbow baby posts. You have such an amazing therapist! Treat yourself!

Diagnosis (if you've been): unexplained, low morph, exploring possible immunology diagnosis

Status (WTO/TWW/TTA): TWW

What are you doing this cycle? (Testing? Treatment?): getting blood work tomorrow then shipping the vials and biopsy sample to the lab!

How are things going?: glad my PCP's office can do the blood draw and let me take the vials with me.  It was funny, the lady I talked to to schedule my appointment said she's also scheduled another women TTGP who would get her thyroid checked weekly and that went to an outside lab too (I think when said person was PG). I wondered if it was for immunology stuff and almost asked. It was probably something more like the PCP's office is closer than their OB or RE's office and just made more sense with time and money when you're talking weekly blood draws.

Any questions?: Not really

GTKY: What's the best Halloween costume you've worn? I was never one for costumes as I got older. I wore my old high school swim team swimsuit, swim cap, goggles, and warm up suit one year at work for Halloween. Not the best plan when that's a lot of skin in the 40s and 50s lol.

walkawaynee

@inthewoods23 @gingermama29 @bows22 they're pushing it back because my cycles are relatively short and she thinks I can fit another one in before I am scheduled to start stims (Mid Nov). Seems like a dangerous game to me but whatevs. 

bows22

@optimistgardener I just had a slight moment of panic that I thought I skipped your first post but I swear it wasn’t there earlier! So strange. I’m with @inthewoods23 that I’d love to hear about whatever donor you choose. Also your childhood  cat costume sounds amazing, I love it! 

@kiki047 friend, you deserve every ounce of these rewards. Not only have you been through hell TTC wise, you are amazing. Please enjoy that wonderful homework!!

@i@inthewoods23 glad you are able to get the blood draw taken care of easily! I might have missed this but did you get the pre-authorization?

bumblebee0210

Back for tags tomorrow probably, but I got my PGT-A results back from last cycle lightning-quick and I figured I would share in spoiler.

We got 2 normals! 2 aneuploid and 1 more low-level mosaic. So exactly in line with the first 5 we tested. It’s great news! With the way this cycle is going I feel like we will not get to 5 normals without another cycle, so we have some decisions to make

optimistgardener

Yo @bumblebee0210 great results! I'm so happy to hear it! You've got a pretty good bank going there, especially if you consider your mosaics.

@bows22 yeah i dunno what happened with my post. this morning when i first tried i was the first person in the thread, but when i hit "post" it told me that it had to be "reviewed" first. When it still hadn't posted by mid-day, i reattempted (the text was still sitting in the box), and that didn't turn up either until a couple of hours later when they both posted. I guess I must be kind of a shady character. 😎

Also re: your question about untriggered IUI timing, I think I commented on this in another thread but that sh** is so stressful. I've worked with midwives (at home IUIs are the best!) who have been very flexible about timing, and with a clinic who preferred a 20-26 hours past OPK+ window, but I gather that most clinics prefer to aim for ~36 hours after. Based on lots of reading over the past few years, it seems that the jury is out as to whether statistics are better if you've already ovulated (within the past say 6 hours) vs. are about to ovulate. Also with fresh (washed) sperm you're in better shape than I was with frozen sperm, which dies pretty quickly if it doesn't find an egg, so your timing issues are a bit less urgent than they might otherwise be. But basically, I would say trust your own sense of how long it usually takes you to go from a pos OPK to signs of ovulation (do you get ovulatory cramps?). If you think the turnaround is pretty quick (I often turn an OPK and ovulate within 18-24 hours), then insist that the clinic meet you closer to that window, rather than them sticking inflexibly to a, say, 36 hour policy. Overall, I believe I recall that the numbers look better on average for untriggered IUIs timed ~30-42 hours after pos OPK vs. ~18-30 hours. But on average means nothing if you ovulate at 18 hours and the IUI isn't for another 18 hours after that.

@gingermama29 so glad you got that opportunity with your cousin

@walkawaynee i am sure you said this already so I'm sorry to ask again but are you going to do PGT-A testing?

@kiki047 big hug. *TW other people's children*

it's not the same at all, but i had a zoom call recently with a group of 3 other friends, two of whom have had children in the time that I've been trying (one woman now has an actual child with full sentences and a personality who runs around doing things, while the other is still toting around a pre-toddler bundle). And both friends talked endlessly about their children's milestones. I kept inadvertently doing various math calculations about if i'd conceived at this point or another, how old those hypothetical children would be and what firsts they might be having right now. I legit started crying halfway through the conversation and had to pretend that I was having an allergic reaction. I don't want to be miserable about other people's kids, especially since one of these women had her own fertility struggles before she conceived, but it's just... rough.

bumblebee0210

@optimistgardener. Glad you're getting things underway and hoping you get that sweet, sweet university healthcare. 

@gingermama29 That sounds so nice-- I have found that there is nothing quite like someone who has gone through it. 

@bows22 GL today!!!

@kiki047 I'm sorry man, that's rough. FWIW, you do not need to "earn" flowers, and if you did, surely surviving to this point has earned you a truck full. 

@inthewoods23. My insurance is good, and I have DOR, so like any cycle with a chance of an embryo I take. I talked to my RE when she called to give me my PGT results, and she said she thought it was just getting off to a slow start with the duostim, and wasn't too worried, so I feel better on that front. 

@walkawaynee That clinic bullsh*t is so frustrating, especially when you can't talk to the doctor directly. Hope the timing works!



Also: in doing research on my bank of embryos, I came across this paper, which has a ton of information on the ongoing pregnancy rates from various types of embryos (though it does not report live birth rates). It is gated, so I'll put the link and my summary of the interesting bits in the spoiler. 

[Note: this may be of interest to those who have had a euploid transfer fail, @inthewoods23
@kiki047 ]

https://pubmed.ncbi.nlm.nih.gov/31445143/

Basic Premise: The authors followed the pregnancies of 2654 euploid transfers, 253 mosaic transfers, and 10 aneuploid transfers (note: this is a huge sample relative to previous papers). Their goal was to see if Next Generation Sequencing (now standard at Cooper Genomics) was better than the previous method (called ACGH). [I think they switched some time in 2016 or so].  They were also interested in the outcomes of mosaic transfers. 

Caveat: This paper is written by scientists at CooperGenomics, so you always want to keep that in mind. It does have a huge sample size, though, because they have access to so much data, and the statistical methods are pretty straightforward and therefore hard to manipulate. Also it's published in a real journal, and thus has has real peer review.  

Findings:

(1) Next Generation Sequencing (NGS) in better than the previous system used, called ACGH. 

(2) Euploid embryos identified with NGS have very high ongoing pregnancy rates--  85% age-adjusted (to 34). Under the old system, (ACGH) it was 71%. 

(3) Low-level mosaic embryos identified with NGS have a 50% ongoing pregnancy rate. High-level mosaic embryos identified with NGS have a 27% ongoing pregnancy rate.

(4) Mosaic embryos had high miscarriage rates (25%), and nothing except the level of mosaicism (which chromosomes, monosomies vs. trisomies, etc) predicted ongoing pregnancy rates. 

(5) None of the 10 aneuploid pregnancies resulted in a healthy baby. 

My Takeaways:

(1) This is huge: Some clinics tell cooper genomics not to report mosaicism. That is-- they tell them to report all embryos with <50% or <40% abnormal cells as euploid, and all others as aneuploid. (Their typical system is <20% abnormal cells is euploid, 20-40% is "low-level mosaic", 40-80% is "high-level mosaic", and >80% is aneuploid.) Combined with their findings on pregnancy rates, this is a big deal. 

This means that, likely *many* unsuccessful euploid transfers are actually mosaic, and many successful aneuploid transfers are probably *also* mosaic. 

I'm not sure how many clinics are doing this, but a lot of their data on low-level mosaic transfers comes from this fact-- people transferred them thinking they were euploid. 

Ask your clinic if you are getting Next Generation Sequencing, and whether the clinic reports mosaic embryos or not.  If not, you may be unknowingly transferring mosaic embryos that have a much lower chance of success (50% vs. 77-85%). 

(2) Actual euploid embryos, identified with CooperGenomics NGS, had really high ongoing pregnancy rates. Much higher than I have seen previously reported. My guess is that this is because most publications take a while, and most "euploid" statistics were measured under the old system (either ACGH which is less sensitive, or the old-old system, without mosaicism as a category at all). The old metric, to bank two euploid embryos for every desired child, might be too conservative. 

(3) Low-level mosaic embryos are not so bad! Most in this study that led to pregnancy were not karyotyped, but those that were were all euploid. 

(4) They imply that age matters in ongoing pregnancy rates even for euploid transfers, but they do not report findings by age, which would have been helpful!

optimistgardener

@bumblebee0210 that was an absolutely beautiful, lucid summary of that article (which I believe I have read before but your version of it really crystallizes the important stuff). I was similarly struck by the really good numbers for true euploid transfers. Regarding age: my sense of the studies I've seen is that age matters, but even with older women successful euploid transfer rates are still numbers I'd be willing to bet on, given the opportunity. Spoilered for stats and copy/pasted article stuff.

For ex: here is a study out this year showing 86% implant rates for "day 5 good quality" euploid embryos at age 33 vs 80% for the same rated embryo at age 39. Less pretty embryos in this study (which, as you've suggested above, may have included some unidentified mosaics/this study used a combination of testing methods to determine euploidy) were also less good in their #s . And here's another study from last year with an absolutely massive cohort of 8k+ embryos from a single clinic, looking at euploid embryos assessed using next-gen sequencing.
Relevant quote from the results: "When comparing the progression through the phases of pregnancy, there was no significant difference between age groups. Thus, while there was an up to 8.7% decrease in how many embryo transfers implanted as age increased (82.0% in < 35 years old vs. 73.3% in > 42 years old), the difference in the number of implanted pregnancies progressing to clinical ones was non-significant: 83.5% in those under 35, 82.7% in those 35–37, 81.0% in 38–40, 79.5% in 41–42, and 78.7% in patients above 42 years old (p = 0.11). This difference was also non-significant when evaluating the rate of clinical pregnancies resulting in live births: 92.7%, 90.8%, 90.8%, 91.1%, and 91.8%, respectively (p = 0.22) (supplemental Table 3)."

walkawaynee

@bumblebee0210 Those results are great happy to see you are working on a good bank! 

@kiki047 my SO is significantly younger than me so all of his friends are in " that age" It went from attending 6 weddings over the last 2 years to now seeing the announcements. You deserve all the rewards! Don't discount yourself.

@optimistgardener yes we will be doing testing. 

kiki047

@bumblebee0210 First of all, YAHOO on the 2 normals! I hope your RE is right and you're just off to a slow start so this duostim isn't all for naught. 
Thank you for the cliff's notes on that study/article. Those are really interesting statistics, and in fact I just watched an IG live about mosaicism with the genetic counsellor from the lab at the clinic that grew/stored my embryos (long story but my RE has some arrangement with them to use their facilities for retrievals/transfers but I'm not directly a patient of theirs) and she was talking about how anything with less than 20% mosaic cells is considered euploid still and that was the first time I had heard of it. Not to mention that the sample for the biopsy is only like 5 cells to begin with, and they're almost always taking the sample from the trophoctoderm, which develops into the placenta and not the baby itself. It never occurred to me that things may not have been as they seemed, meaning we still could have had mosaic cells in those euploid embryos. 

Further musings in spoiler... 

Which then leads me to wonder if my RE had a point and that we should always do the NIPT even knowing that we transferred euploid embryos, given that they may not have been 100% euploid. The Genetic Counsellor seemed to be of the mindset that we can glean enough information from PGT-A and with NIPT not technically testing the cells of the baby itself (only an amnio can do that), unless there was reason to believe otherwise - such as concerns about structural abnormalities identified on the anatomy scan, etc - it doesn't really give us much more useful information. 
She was a big supporter of the idea that low level mosaics still had a very good chance of a live birth and that while the studies are still ongoing, they're seeing the most success with segmental mosaics and they have an almost 100% success rate of self-correcting in the womb. It was an interesting interview, and I felt like I got a lot out of it. Especially since we've now had 1 failure and 2 MCs of euploid embryos, and 1 failure of a fresh, non-tested embryo, with only 1 untested and 1 low level mosaic left in storage. She answered one of my questions and agreed that if the option is there, it is always better to try to create more euploid embryos than to use the mosaic first. 

*other important thing to note is that it was Cooper that did our PGT so I assume they're using the next generation sequencing already. 

@inthewoods23 glad you are able to get the rest of your blood tests done and can hopefully send everything off for testing this week. Any news on the pre-auth? Do you have a follow up booked with the RI or is it dependent on your results coming back?
@optimistgardener ohhh yes, we have some of those friends too and it is the worst. *TW* My one gf is like super duper sensitive to our feelings and has been really considerate of our journey but now that she's KU again, she has basically just ghosted me since she told me about her pregnancy. And yeah, I guess I also haven't reached out either, so now we're in this kind of awkward holding pattern of neither one of us wanting to trigger anything so we do nothing. That's how it feels with most of our friends that have kids these days, I just put our friendships on hold until we're in a better place to be able to stomach it. 
@bows22 thank you friend. Rationally I know I don't need to justify doing something nice for myself, I just struggle with it. I went ahead and booked a couples massage for the end of the month at least. Thinking I need to do something sooner than that too though. Thinking of you today for your IUI!! FX!! 

ETA because we were posting at the same time:
@walkawaynee oh yes, and it feels like it hurts more when they're younger than you too... like that was us at one time. 4 years later, we're still here... I dread weddings now for that reason, because it feels like I know what else is coming. My cousin had an abrupt, out of the blue wedding last year after his free-spirited non-binary partner who bucks tradition and claimed she didn't believe in marriage or rings or vows suddenly up and decided they were going to get engaged AND married like, immediately, and of course I assumed it was because she was KU. She's not, but it kept me up at night for months. 

optimistgardener

donor choice talk.

@inthewoods23 and @bows22 my current likely pick is a short guy with brown wavy hair and hazel eyes (because i'm a sucker for that combo), who loves his mother and sister very much and has plans to get his phd in something science-y. but crucially, he also is interested in languages and can play an instrument. i am slightly hesitant with this donor pick because usually i choose guys who already have confirmed pregnancies with other clients, but this guy is new to their database. on the other hand, obviously his semen analysis must be A+ or they wouldn't choose him. Also a nice thing is he is CMV (herpes) negative. I am also CMV negative and my understanding is that it is safer to go this way to avoid the possibility of congenital CMV/birth defects.

LJMoon6

@optimistgardener Why are there always so many hoops with insurance! It makes me ragey! You’re picking a new donor for next cycle, right? I was going to ask if they give you statistics of confirmed pregnancies or not, but you just answered that question lol. Would that be a deal breaker for you? If this next cycle didn’t work out would you always wonder if it were the sperm?

@bublebee0210 I’m sorry your numbers don’t look as good for this second half. That’s a good theory about her maybe taking all the smaller eggs. I hope some of the smaller ones can catch up for you. But yay for your PGT-A results! That’s great news!

@gingermama29 I’m so glad you got the chance to talk with your cousin. What a wonderful resource!

@walkawaynee I’m sorry you have to wait out another cycle. That’s incredibly frustrating. Take the time you need to adjust. Is there any reason why you don’t want to NTNP? If not, then I would say, just go for it.

@bows22 I’ve never done an IUI without a trigger, but from what I’ve read I think they’re typically done 24 hours after a positive. I hear you on not being hopeful. I’m feeling the same way this cycle. I will stay hopeful for you!

@kiki047 Big big big hugs friend! I’m so sorry you’re being triggered left and right. I’m glad you have a plan to reward yourself this week and that you have a great therapist to talk through all your feelings with. Why do pregnancy announcements and big bellies have to show up at the worst of times!? Thank you for the suggestion last week about priming the pump. I don’t think MH would have enough control over that lol. I’ll bring it up to him though. I’ve also thought about having him do a 3 day hold instead of 2 day, but I don’t know if it really matters.

@inthewoods23 Yay for getting all your labs done and shipped off! I’m super hopeful that you get some answers from all these tests!

acleverusername

Hey girlies, I'm in full lurker mode this week as I've got about 15 days before I start managing a team of 2, to find myself a minion. Blergh, but also exciting! Will support you all as I can. 

Also, excellent info there @bumblebee0210 & @optimistgardener. Good luck to us all!

LJMoon6

Diagnosis (if you've been):  Unexplained

 

Status (WTO/TWW/TTA):  WTO

 

What are you doing this cycle? (Testing? Treatment?):  IUI on Friday

 

How are things going?:  I went in for my ultrasound this morning… and the damn nurse couldn’t find my ovaries or uterus. Like… come on! Are you kidding me?! She asked if they were usually hard to find. Omg. This clinic just hit a new low for me.

Anyways. An actual update on my cycle. I had 2 follicles on my left ovary (16 and 17.5). But my lining was only 5.5 (trilaminar). They want me to trigger tomorrow and do the IUI on Friday. Personally I would rather wait an extra day and do the IUI on Saturday, but they of course wont do them on the weekends if they don’t have to. Blah. I’m already not hopeful for this cycle.

 

Any questions?:  Has anyone heard of letrozole thinning your lining (I know clomid does but this is the second time my lining has been super thin on this higher dose)? Am I SOL this cycle with how thin mine is?

 

GTKY: What's the best Halloween costume you've worn? One year I dressed up as cat woman (not very original lol). But the rest of my friends dressed as poison ivy, harley quinn, and two-face.

bumblebee0210

@optimistgardener. Thanks!! I do a lot of applied statistics (and explaining those statistics) in my work, so I'm glad it was actually a clear summary. Also I agree at your age totally worth doing, I didn't mean to imply otherwise (you are not that old in IVF-land, lady), and I wonder if there is an age gradient for euploid embryos whether it is due to undetected chromosomal issues (if you have a higher underlying probability of aneuploidy, then more of your euploid embryos will actually be misclassified), OR something else, be it structural, hormonal, inflammation, whatever. 

@kiki047 I agree your 3 failed euploid transfers points to something else (not just like underlying mosaicism) going on. For someone like @inthewoods23. though, with one failed transfer, it does make me wonder (though I think you are young enough that aneuploidy should be less of an issue?). 

I do know that @acleverusername had a mosaic embryo that was originally classified as "euploid", and i wonder if it had not been T21 if they would have mentioned it at all. 


AFM: Cycle is picking up a little, but we will have no miracles here. Stats in spoiler. 

Stim Day 9: I had 6 measurable today, 4 that were 10.5, and 2 that were 15.5 and 16.5. I think 2 or 3 less than 10. Estradiol did double to 328, but it has a lot of catching up to do. 

inthewoods23

@walkawaynee I still don't get that reasoning! But whatever like you say. Like why does it matter if you'd be going on BCP, you know?

@bows22 I asked about the pre-auth yesterday and she said she hasn't heard anything back yet about it. When I talked to my insurance they said it could take up to 15 days. Better be able to get this blood drawn by next week!

@bumblebee0210 2 normals is wonderful! My PGT was through Cooper just like @kiki047's. I only had 1 of 6 be abnormal. I don't recall my RE ever talking about mosaics so maybe it's entirely possible that my 1 abnormal was mosaic, but I don't think it would be if my results said T18 or 21 (not going to bother looking even though my medical records are literally right next to me on the floor atm). My clinic seems to be the type to do everything in order to get the best success rate so I wouldn't be surprised if any mosaicism is automatically recorded as abnormal for them.

@kiki047 I was going to ask the RI's assistant about scheduling the follow up once I get the pre-auth reviewed - if I can do that once I know what day I'll go to Quest to "donate my blood for science" haha aka all the other immunology/genetic labs. I have all the stuff done for the immunology lab in Chicago which I think takes the longest. I think it's supposed to be scheduled a week after all the results come in to give the RI time to review.

@optimistgardener sounds like a dreamy guy! Almost sounds like my DH haha but his sperm morphology sucks so obviously it ain't him.

@LJMoon6 I think with letrozole sometimes more isn't better. I haven't heard of it causing lining issues (it didn't give me problems), but maybe at higher doses it can? I really don't know!


Update on me - I got my blood drawn for the vials that go to the immunology lab in Chicago and dropped that off at FedEx (along with my lovely lining sample). Still no word on the pre-authorization coming through but I hope I hear soon! DH is usually a pain in my butt to get a time for any kind of appointment. Like dammit you have a personal life stop acting like you can't possibly take a little time out of your work day for 1 damn vial of blood. Employers understand! Sigh. Oh well, I got the really hard part out of the way!

zwink1

@optimistgardener, while setting up insurance sucks, I'm very happy for your fancy fertility-friendly policy!  Re your donor talk - having never picked a donor before, your top choice sounds like a winner to me (but I also don't know what the other options are).  It has to be more than a little daunting to flip through a list of donors trying to pick out the person with the best combo of traits that you'd hope to pass on to your future child. 

@bumblebee0210, sorry that this cycle isn't going as well as last for you, but happy to hear the great pgt news!

@gingermama29, it's so great to have someone close to you who "gets it" and is able to provide substantive support.

@walkawaynee, I'm sorry your start got bumped to next cycle.  FX that it doesn't cause any delays to your planned stim start.

@kiki047, I'm sorry that you're having a rough month.  I think that your therapist's homework is a great idea.  I often feel like I haven't earned the right to reward myself, but I'm slowly learning over time that that's something I need to get out of my own head.  H rewards himself on a regular basis and I'm finally starting to learn from him rather than get frustrated by it.  

@LJMoon6, I mean. Wow.  My RE's office occasionally has trouble tracking down my ovaries (because they tend to hide in shadows and my lefty is probably adhered to the back of my uterus), but ummm, not being able to find the whole uterus is... wow. 



Diagnosis (if you've been):  primarily MFI +ovulatory dysfunction 

Status (WTO/TWW/TTA): idk man.  Waiting for CD1 to show up.  

What are you doing this cycle? (Testing? Treatment?):  Treatment.

 

How are things going?: not bad.  I am officially covid free - not that I was concerned about potentially testing positive - so cycle is clear to start.  I can feeeeell CD1 on the horizon, but it refuses to actually show.  Either way though, I call tomorrow (cut off is CD1 or 5 days after stopping the BC) if it doesn't show before then to schedule a baseline ultrasound and set the rest of the FET schedule. 

I think I need to back away from the Google machine and channel some inner zen.  When we froze our embryos in 2017, research was pretty spotty on whether embryos that took until day 6 to make it to freezeable blast had the same success rates as day 5ers.  I had been talking to my sister over the weekend about our upcoming cycle, and it started me down a rabbit hole.  Turns out there was a new study published in May that did a deep dive into the success rates of FETs with 5 and 6 day blasts, and the results indicated that day 5 blasts have (what the study described as significantly) better clincial pregnancy and live birth rates than day 6 blasts, regardless of grading.  It's made me pretty nervous about the fact that of our 5 embryos (not pgs/pgt tested) we have only 1 day 5 blast.  This is where my inner zen has to start coming in, I guess. 

 

GTKY: What's the best Halloween costume you've worn? Oph. I'm bad at Halloween. I did a pretty good snow man one year though.  

acleverusername

@kiki047 @bumblebee0210 @optimistgardener @inthewoods23 and others... 

Here's the report I got from our genetic testing company (Natera). It's QUITE detailed. But as you can see, even the low-level mosaic embryo is listed in the "euploid" section which is why when the nurse called me that this info, she said all 3 were euploid. (@LJMoon6... see what I mean about nurses not knowing anything?) 

optimistgardener

@inthewoods23 so stressful about your pre-auth still MIA. I swear the hoops health insurance companies make us jump through take years... ok maybe just weeks but still... off our lives. why can we not come up with a simpler and more functional system. ok edgy political rant done. Also inthewoods and @zwink1, thanks for supporting my donor choice! It's such a weird process. I feel like i've talked about this on here before, and it's basically gonna be an essay so spoiler, but here's some thoughts on how i approach selection:

The donor profiles are a combination of really basic, cold, clinical information, like ancestory, antibodies detected/not detected for a couple of STDs, eye color, height, etc., medical and family history... and then this interesting essay/observational mash-up that is partially the folks at the clinic sitting down and interviewing the guy and sort of describing how he came across to them, what they think he looks like, how he talked about his family, childhood, career, future plans, interests, etc., and then another section in which the donors write up their own responses to a selection of questions, so you get a sense of why they've chosen to become donors, why they did or did not agree to join the identity release program (re: unveiling their identification when the kid turns 18), how they put their interests, career plans, etc., into their own words, and the like. I always study hard the donor's answer to the question about why they donated. all egotists who want to pass on their A+ superior genes immediately get a hard pass. But I am super soft on guys that say that they are donating because they know people who have benefited from a donor program.
I also pay close attention for some reason to how they talk about their childhoods. guys who had childhoods full of adventure and creativity and exploration (be it through actual outdoor rambling or via books or art) always catch my eye. I also love profiles where the guy talks a lot about his relationship to his parents and siblings, and about what it meant to them to be a kid. the authenticity in this section feels like the clearest picture i get of who they are and what they value.

On the other hand, I usually have to ignore the section where donors talk about their favorite books, films, etc., because i can get really judgy! I have to remind myself that these guys are basically hardly more than kids (mid-20s or even younger) looking for spare cash while at university or trying to find their professional footing or whatever, and it's no blot on them if they have dumb taste. On the same note, I have to remind myself that these are not people i would be interested in if i met them in real life. Like I said, a lot of these guys are young enough that they could almost technically be my children, if I had made very different life choices. Great candidates for top quality sperm, terrible romantic candidates for a woman in her late 30s. For this reason, when I try to imagine what the guy might look like based on the fairly minimalist description, I always try to imagine him as he might appear 20 years older.

Lots of edits because I can't write.

bows22

@bumblebee0210 that’s amazing news about your embryo testing results! I hope this cycle continues to pick up!

@optimistgardener thank you for your thoughts on the IUI timing! Gives me some things to think about. My clinic’s policy (according to the nurses, I had slightly different instructions from my RE) is that you only test with FMU (even if that goes against the instructions of your test) and then you go in the next day after a positive. So, in theory if you would get a positive with your second pee of the day, it will be almost 48 hours until your IUI! My first positive actually was with FMU so I was okay for this cycle (and I had a temp drop yesterday morning so it seems like we def did it in time before ovulation) but if there is a next cycle and I do get a positive earlier in the day, I think I’m going to have to insist on going in at the end of the next day. The PA who did my IUI was not the normal one I see so I didn’t feel like talking about it with her, but we will see. Your donor sounds perfect! I think going with your gut instinct is the right way to go even if he doesn’t have proven success yet. 

@LJ@LJMoon6 reading your stories makes me feel like we go to the same clinic, even though I don’t think you are anywhere close to me. It makes me feel better to know that I’m not alone, but kind of scary that there are multiple offices out there with staff that don’t really seem to have a clue? 

@zwink oof, good luck with the inner zen. But I think there are so many variables with getting pregnant in general that you shouldn’t get too caught up in statistics, especially for things you can’t control (I know you know this, just trying to contribute to the zen). 

AFM - IUI went perfectly! I think DH was expecting something more elaborate than just a speculum and a catheter but it was funny to hear his “fresh take” on everything. The PA who did the IUI made a comment about how I should act as though I’m pregnant for the next 2 weeks and it has unexpectedly made me start to unravel….I have a deadline coming up work and there is still so much work to do so I was going to just put my head down and focus on that, but now I have her voice in the back of my mind. I wasn’t planning to get drunk or get an X-Ray or anything like that but just giving me the idea that I could do something to mess this up has put my stress level over the edge. Therefore I’m up in the middle of the night and can’t sleep which never happens to me, but hopefully getting this vent off my chest will help

optimistgardener

@bows22 so glad the IUI went well! i know that thing they say about "act like you're pregnant" can mess with your head. I'm really hoping that it will prove to be true in your case! But also, you gotta keep in your mind that this is the same TWW that you've long since mastered. You won't/can't mess this up. If it takes, then it takes and that's fantastic! If it doesn't, it won't be because of something you did or didn't do; it will be all the usual reasons why an embryo might not take in spite of frigging excellent timing. So just go out there and do your usual thing, focus on your work project, make heavy use of the TWW dailies, and know this is not in your hands anymore. /// As for your clinic's "FMU only" policy, that is exactly the kind of BS that I explicitly ignore. In case you have to do this again, just keep doing your usual OPK thing. You know what you're doing better than them on this particular issue. Make your own calculations for how you want to aim timing-wise, and then report your "FMU positive" accordingly. This IUI process is too involved to get wrong because they have some back-a**wards ideas about how to test for LH. I mean, I never even usually get a positive with FMU. My strong readings nearly always arrive around mid-day, and by the next day they're often on the retreat, so their rules could conceivably make me miss my + entirely.

bumblebee0210

@inthewoods23. To be clear, the worry is not that your aneuploid is mosaic, but that your euploid was. But thinking about your case specifically, this seems like not a huge concern because you have been trying for 2+ years, and clearly make euploid embryos, so I think it has to be something on the implantation side (obviously this is the reason for the RI-- I have so many fingers crossed that they will have answers for you). 

I think this would be most relevant for someone with unexplained/AMA/DOR, who did IVF and got like 1 or 2 "euploid" and then had failed transfer, they might think "there might be something wrong with my uterus/immune system/whatever", but actually their "euploid" just wasn't. 

Also-- for all the hardcore nerds (@acleverusername, @optimistgardener), I am recruiting some friends who are more adept at biostatistics than I am (I do econometrics) to try to get to the bottom of the "what are the chances of live birth from a single euploid embryo" question. I will report back!

inthewoods23

@zwink1 step away from the Google!

@acleverusername interesting! Ours definitely doesn't show anything like that.

@optimistgardener the way you evaluate these profiles is great! I love that you really look at them for who they are and how they act with family and all that. It's not just about looks!

@bows22 ugh I hate those small comments like that! They stick in your brain too well. Your comments about DH's thoughts on the process make me laugh and remind me of my 3rd IUI when I didn't even feel it. I swear it was 5 seconds of my legs up when my RE told me I was all done. What? Lol I just laid down!

@bumblebee0210 no I knew that's what you meant! It would still be very interesting to know considered 5 of 6 were deemed normal if any were mosaic. I do like the clinics that will give as much as they can a chance to be a successful pregnancy, but of course others want only the best guarantees.

bows22

@optimistgardener thank you, friend! That was exactly what I needed someone to tell me, for all of it. Logically I knew it but I needed it to be all spelled out haha. 

bumblebee0210

@bows22 I Second @optimistgardener 1000%. I have had successes and failures on all of these fronts, and it has never been because of what I did. Think of all the idiot peggies waving around their pee-sticks. You know those dum-dums were not, like, avoiding soft cheeses. 

AFM: Likely trigger tonight? This looks a lot like my third cycle, which crapped out entirely, so I do not have high hopes, but I'm excited to get it overwith and transfer one of our good ones!

optimistgardener

@bumblebee0210 fingers crossed for this cycle to still turn up a winner for you despite expectations. and so excited to see you move on to the next phase of this process!

optimistgardener

argh. so it turns out that my insurance will not begin to offer fertility benefits until January. Somehow or another, I managed to get through like 4 different conversations with people at my insurance company in which i was discussing with them at excruciating degrees of detail the hoops I needed to jump through in terms of (re-)organizing my chain of referrals and in which i explicitly had said to the folks at the other end of the line that the goal was to get things in order for an IVF cycle due to start in late November, and none of those people was like, "oh, well our insurance program doesn't offer fertility benefits until the start of the new year."

it was only after i spoke to the finances person at the fertility center and she ran all my details that i learned this key point. i actually at first assumed there was some mistake and called the insurance company myself. the woman i eventually got through to is like, "oh yeah, no question. this is a brand new policy and won't go into effect until 2022. i have no idea why those other people didn't mention that."

soooo.... i am left with an agonizing question. do i pay out of pocket again for this cycle that i already have set up (which at least sort of works with the university's academic calendar), or do i postpone my treatment for a couple of months and get half of it paid for (but it will be a complete disaster as far as the academic calendar is concerned)? of obvious import here is that there's a loud biological clock ticking away in my ear.

ETA eff the insurance industry, seriously. and the bs norms that devalue fertility care as an "add-on" choice for folks who can afford it.

zwink1

@optimistgardener, thanks for the deep dive on how you approach donor selection.  That's really interesting interesting I think is a great way to approach what must otherwise feel like a pretty clinical choice.  Honing in on those hidden gems of true personality I would think is much more important in the long run than many objective stats.  In other news, I'm sorry to hear that your insurance coverage doesn't kick in until 2022.  What a shitty turn of events for something that you were so looking forward to.  

@bows22, you're right.  There are soooo many variables that I need to not zone in on one specific one that I have no control over.  I know this, but definitely needed the reminder 🙂

@bumblebee0210, sending you all of my good thoughts.  FX that this cycle turns our better than you expect!!

inthewoods23

@bumblebee0210 is your ER today or tomorrow? Either way GL!

@optimistgardener I'd like to commiserate over how much insurance sucks.

I contacted my insurance today hoping they could maybe give me some kind of status update on the pre-authorization I need for the genetic tests the RI is requesting. Well apparently there's nothing in my file about it! Like WTF the medical assistant gathered all the info to submit it last week and said she hadn't heard back yet when I asked on Tuesday. So either the agent I talked to doesn't know how to look shit up or somehow the clinic didn't actually submit it yet. This is so f*cking stupid. This blood work is literally the last thing I need to do now that I have the saline sono scheduled for next week. This is supposed to be the easy part! So much wasted time. From what I hear from others going through this process with the RI, it seems like no one's insurance covers these genetic tests anyways because they're deemed experimental or not medically necessary. So should I just bite the bullet and schedule the appointment to have my blood draw anyway, pay OOP for it, and give a big middle finger to my insurance company??

optimistgardener

@inthewoods23 aaaarrrgh! solidarity. also, the arbitrary lines drawn re: what is "medically necessary" tick me off to no end.

bumblebee0210

Quick Update on ER/fert in spoiler

 My doctor called me on Thursday afternoon, and basically gave me a choice to trigger that night or the following night. I had a 20, an 18 and then like a 14 that were in shooting distance, but there were 2 more 10-12. My third cycle had been a bit like this, and they pushed me out do day 13, and my e2 rise plateaued. I only got 2 eggs (from 5 follicles), and neither fertilized. So my RE was like, we don't want that to happen again, but if you trigger tonight you will likely not get more than 3 fertilizable eggs. She said maybe they'd actually retrieve 5, but the rest would be immature. Or we could take the risk and push out another day. I had really low hopes for the cycle anyway, and Saturday was more convenient for me to have the ER, so I just said I'd rather trigger that night and go for the three eggs in range.

So cut to Saturday-- I talked to the on call doctor and I was like "we are basically looking at three, right? And she was like 'yep'". So then I wake up and they tell me they get nine eggs! Which was a huge shock. Then I was like "well, she told me that only 3 would be mature, so let's not get my hopes up", but when they called me this morning from the lab, 6 were mature, and 4 had fertilized! We have generally not had great fert rates due to egg quality, and my last cycle was the only one to have more than 3 eggs fertilized ever. So that's great news! I feel better that we will hopefully have at least 1 or 2 blasts to send off for testing before we do a transfer next month.