IF Testing & Treatment w/o 5.24

[Deleted User] · May 2021

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.
<img alt="Random Gifs 3 on Behance" src="https://external-content.duckduckgo.com/iu/?u=https%3A%2F%2Ftse4.mm.bing.net%2Fth%3Fid%3DOIP.16t9hEec3_xu0MkbrIBeUAHaFj%26pid%3DApi&f=1" title="Image: https://external-content.duckduckgo.com/iu/?u=https%3A%2F%2Ftse4.mm.bing.net%2Fth%3Fid%3DOIP.16t9hEec3_xu0MkbrIBeUAHaFj%26pid%3DApi&f=1">
<div><div>
</div><div>Diagnosis (if you've been):

</div><div>Status (WTO/TWW/TTA):

</div><div>What are you doing this cycle? (Testing? Treatment?):

</div><div>How are things going?:

</div><div>Any questions?:

</div><div>GTKY:  What is your favorite thing to make / bring to a cookout?</div></div>

bumblebee0210 · May 2021

Diagnosis (if you've been): RPL, DOR

Status (WTO/TWW/TTA): TWW (WFAF)

What are you doing this cycle? (Testing? Treatment?): Estrogen priming for ER #4

How are things going?: Ok-- met with my doctor today and she definitely recommends switching over to EPP and she is also going to switch me to earlier Menopur (starting day 1 instead of with the antagonist).

Any questions?: Yes-- I didn't catch this before but with the estrogen priming protocol, you start taking estrace one week post-LH surge, then stop on CD1. I always had short luteal phases before (look out for DOR, kids!), so for me that would only mean like 3 days of estrace. Is that too short? Or does estrace prolong the luteal phase. The protocol I was given says estrace is continued 10-21 days and the last pill should be taken on CD 1. But even with a normal luteal phase, those numbers don't add up. Does estrace delay your period?

GTKY: What is your favorite thing to make / bring to a cookout? Probably dessert (pie), but I also like to grill veggies a lot-- eggplant, zucchini, etc.

[Deleted User] · May 2021

@bumblebee0210 I have not done estrogen priming, but I hear where you're coming from. Starting with CD10 makes more sense to my mind, rather than seven days past surge - your cycle is practically over at that point! So I'm not sure how that works, like you said -- if it would prolong your cycle, which I wouldn't think so? Where Progesterone definitely can/does. But maybe those handful of days is enough to do what they want it to do? Not too sure. I would definitely call my nurse and ask those questions if I were you, cos I would want to understand what's going on there, too.

[Deleted User] · May 2021

<div><div><div><b>Diagnosis</b> (if you've been): Azoospermia

</div><div><b>Status</b> (WTO/TWW/TTA):

</div><div><b>What are you doing this cycle?</b> (Testing? Treatment?): Natural FET

</div><div><b>How are things going?</b>: So far so good, I suppose. I have been much more calm in general this cycle. I didn't stick as consistently with my whole super low carb, rrl tea, arginine, inositol regime, but I did do a bit of pom juice and beets, and I've been pretty good about having some avocado or guac on the daily, and the Brazil nuts, I think I remember most days. It's been better for my overall well being to keep doing what I can! but also not stress too much about it like a soldier. Taking anything non-food based that my doctor didn't prescribe was maybe messing with my head a little, too. There may be a pineapple waiting at home for me with my name on it, though! lol But that's just for fun. I also find myself identifying with the self-professed, "reformed serial testers," and I'm almost afraid to test and burst the bubble this time around. It remains to be seen how I will actually feel in the heat of the moment though...

</div><div><b>Any questions?</b>: Ute goggles anyone???
<img alt="" src="https://i.giphy.com/media/hIbl8KWbPrpSg/giphy.webp">

</div><div><b>GTKY</b>: What is your favorite thing to make / bring to a cookout? I am also a grilled veggie lover @bumblebee0210 I love to bring watermelon if I have zero time, but if we feeling fancy, I like making watermelon salad! Tabouli salad is another fave to bring, but it's been a while since I stood there hand chopping all that parsley. lol l Now that's a labor of love. Santa has since brought me a full size food processor though, so next time I would try that and it's probably a huge time saver.</div></div></div><div></div>

acleverusername · May 2021

Psssst @laura-kay this is the latest thread (well, for this week). Jump in when you feel ready. *virtual hugs*

acleverusername · May 2021

@bumblebee0210 I took estrace when I had my egg retrieval back in 2019; it did extend my luteal phase, but I don't know if was supposed it? At the time, I chalked it up to the fact that I was traveling from one side of the continent to the other. I would echo what @BusinessWife said and ask your doctor for more explanation. Please share here what you find out. What do you mean re: starting Menopur earlier? When were you starting the Menopur & antagonist previously?

@BusinessWife That's great about being more calm this cycle. And it sounds like you have plenty to keep your mind occupied (i.e. perhaps a new house?!) Enjoy that pineapple! And uh... yeah... I'll take those ute google cause... see below.

Diagnosis (if you've been): AMA + suspected sperm-driven fertilization issues

Status (WTO/TWW/TTA): AFAIK, I'm WTO... still.

What are you doing this cycle? (Testing? Treatment?): mid-luteal phase IVF cycle #1

How are things going?: Uh... yeah, I have no idea what my ovaries are up to, so ute google please! I took Letrazole this cycle to expedite my ovulation, so that I can get this IVF business started sooner rather than later. In my natural cycles, I tend to O later, like Day 20-21, and in the past, whenever I've taken Letrazole, I'd O Day 10-12. Well, it's Day 14, Sergio is nowhere to be seen so I dunno. I guess that's my comeuppance for trying to rush things. My current IVF calendar states that if I haven't gotten my surge by today, I have to call the clinic and they'll have me come in for a baseline tomorrow, so that's the plan for today. I'm seriously at a loss as to what my body is up to. BBT is all over the place too.

In the meanwhile, we had our visit with clinical geneticist last week about MH's SDHA faulty gene. It was actually a great call, because we had the genetic counselor, the clinical geneticist, and a genetic fellow who was an MFM physician on the call for 1 hour. The purpose was both to find out what it (faulty gene) means for MH and our IVF cycle. Well, TL;DR, I've now had to take a genetic cancer screen too (sent the test off on Monday) to make sure I also don't have this gene mutation. If I do, that means that there would be 1 in 4 chances for our would-be children to be affected by Leigh's disease which is mortal in the first few years of life. Anywho, I sent off the notes from those visits to our RE, and now he wants to talk to us to discuss options (which I suspect might include potentially delaying our cycle so that we can prepare a PGT-M probe). That convo is happening this morning, in 30 min. As for MH, he was referred to the endocrinology team at UCSF to begin monitoring / management of the gene. The trouble with this gene is that there isn't a lot of research on its prevalence in general populations. Previously, they would only test family members of individuals who end up with rare cancers that this gene can cause (so: biased population). So, they're calling this an "incidental finding" and we don't really know what that means.

Any questions?: Sergio, oh Sergio, where art thou Sergio?! (For those of you who don't know, I call my LH surge "Sergio")

GTKY: What is your favorite thing to make / bring to a cookout? Gosh, it's been so long since I've been to a cookout! I would go with tabbouleh salad à la @businesswife which I learned to make from my ex's mother (Leb family), or a pasta salad. MH and I have been smoking stuff ever since we got our Big Green Egg last July, so that might impact what we bring to a next cookout, whenever that happens.

kiwi2628 · May 2021

@bumblebee0210 when I did estrogen priming I started day 7 DPO. It did extend my LP by like a day and then I continued it on into the FP of my next cycle (the retrieval cycle)

@BusinessWife FX for you!

kiwi2628 · May 2021

Diagnosis (if you've been): unexplained

Status (WTO/TWW/TTA): WF FET

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

How are things going?: good. Just trying still to decide when to do my FET. I was hoping I would ovulate either earlier or later this cycle so we could transfer when I wanted (first week of August), but I stupidly ovulated on time which means I’ll be on vacation when I was hoping to transfer so now we have to decide a month earlier (mid July) or late (end of august). There are pros and cons to both so that’s my first world problem for today.

Any questions?:

GTKY: What is your favorite thing to make / bring to a cookout?

grapes lol

[Deleted User] · May 2021

@acleverusername Glad you feel like you had a productive consult! And of course, now's gotta be the time your ovaries decide to go off script. 🤦 Fx for a good scan and some clarity soon ... As for house hunting, it's definitely been a good distraction! We are still waiting for our prequal to be updated to get our "real" number, but it's been fun just knowing we did get pre-qualified for Something, and now we can kind of start looking more purposefully. There's a really amazing property we are going to maybe see on Sunday, since they are having an open house!? So kind of hoping we could get our updated number in time for that since right now it's a little out of reach. It's also a little far out of the exact area we want to be in too, but we have to start somewhere. It's a crazy time right now to try to buy, everything is going fast and for over list price so 🤷🤷🤷
<img src="https://us.v-cdn.net/5020794/uploads/editor/6x/bqc3ivpytsut.gif" alt="">

@kiwi2628 Thanks for the well wishes! I'm sorry your timing went a little sideways for you. You're right that it's a lucky problem to have, and I'm sure there's really no wrong answer, either way. I'm always a fan of getting down to business, and I know it would be hard for me to wait a couple extra months, unless there were a really good reason to, kwim? But I'm sure you and YH will make the right decision for you and your family. :)

bumblebee0210 · May 2021

Thanks guys! My doctor said that estrace does in fact increase the luteal phase by a few days, but their protocol just had a mistake, and I will likely be on the estrace for 3-10 days, not 10-21. So that's good to know!

@acleverusername glad geneticist meeting went well! Sorry O is late to the party-- I am worried about this happening to me next cycle too...

@kiwi2628. we are also dealing with vacation timing & cycles-- the estrace priming requires the natural cycle first, and I am worried mine will go super long (my pretreatment cycles were typically short but I'm worried about late O). It's so annoying! A week shouldn't make that big of a difference but it can throw off a whole plan.

@BusinessWife Just over here with fxxxx

optimistgardener · May 2021

heeeey everyone. just a little late lurking here after my incredibly relaxing week in the wilderness. i guess i missed this place though because the first thing I did on returning home after throwing everything I own into the laundry was log in to read everyone's updates.

will try to write proper responses later.

nothing new at my end except a totally expected bfn at 12dpo. one of those supermarket bathroom test situations after stopping at a random pharmacy on the drive home, obvs.

[Deleted User] · May 2021

(((hugs))) @optimistgardener BFNs still suck, no matter what. Especially when they are taken at random supermarket bathrooms on the way home from vacation... Sigh. :/

optimistgardener · May 2021

thanks @BusinessWife. I know what you mean about being afraid to test. I've never been much of a serial tester. Instead I vacillate between not testing and just waiting for menses to deliver the news, vs. a more disciplined 12dpo testing policy. The "bubble" is an ok place for me to hang out in for a couple of weeks out of a month. I'm so glad you've got lots of stuff to keep you super busy while you're in the waiting bubble!

@acleverusername the first time i read your post I misread "traveling" for "walking" and i was like, you walked across the continent?!!! But yeah, less extreme forms of traveling can also make a mess of the calendar. Did Sergio eventually stage an arrival or did you wind up getting your baseline? What did you learn?

@bumblebee0210 I hope your system is taking a much-needed breather as you get ready for your new protocol. Super interested to learn how the EPP goes!

@kiwi2628 sorry about the scheduling problems! so frustrating!

acleverusername · May 2021

@kiwi2628 Ha! Enjoy those first world problems. I'm eager for a time when I have those too. LOL @ grapes. A great, and ofter overlooked, contribution.

@optimistgardener so nice to hear you had a relaxing week in the woods. Yeah, walking across the continent is a bit out of my wheelhouse. Haha. Sergio arrived yesterday, but… hold on to your hats… cause…

OF COURSE, everything has now changed (Hah! And I thought I was gonna be a 🦄 whose cycle goes according to plan.) Anywho, what was supposed to be a mid-luteal cycle has now become an Aygestin-priming cycle (yo, guys, that’s a progesterone-priming cycle; they DO exist. I would like to apologize to @Lisa3379 because we kinda gave her a hard time when she mentioned it. She was probably on same protocol as they seem to be all the rage here).

You might ask “Why?” and that is exactly the right question to ask. Answer: to buy time to get my genetic cancer screen results back (2-3 weeks from 5/25).

You must now be thinking “but why?” Yeah, so, everyone ready for a genetics lesson? Gather round...

So, as I mentioned previously, a while ago MH got the results of his genetic cancer screen (ordered by TEW because he has a history of cancer on both sides of his family). Those results showed that he has a faulty SDHA gene. "Faulty" means that it is autosomal dominant. Ergo, only one copy of the gene is needed to put you at risk for acquiring rare tumours and cancers (paraganglioma or pheochromocytoma or gastrointestinal stromal tumors) later in life; current literature suggests that anyone with an SDHA mutation has a 10% of becoming sick. So, that's a problem for MH and I to address separately, and he's been referred for baselines and further monitoring (and by the way, screening is kinda intense including semi-annual whole-body MRI, annual urine tests, and a bunch more serious-sounding tests).

Prior to our consult with the geneticist, our RE hadn’t realized that this mutation is autosomal dominant, and in fact, once he realized this, he wanted us to consider getting PGT-M testing done, because there’s now essentially a 50% chance of passing that mutated gene to an offspring (ergo, chances that our offspring will be at risk for the aforementioned rare cancers).

Guys… it takes 2-3 months to prepare a PGT-M probe! 😱 MH and I discussed this, and based on our convo with the clinical geneticist, we don’t feel that the risk of disease is high enough to warrant doing PGT-M… unless I also have that mutation.

This is where things get interesting: based on convo with the geneticist, current SDHA research is biased in that previously, only family members of those who ended up with rare cancers were tested. The geneticist basically hinted that there might be a bunch of ppl walking around with this gene mutation that never get sick. Herein lies the problem: I am a person walking around, and if I also have this gene nutrition, we would need to do PGT-M testing because that would put any offspring at 25% chance of having Leigh’s disease, aka juvenile encephalopathy. Which is deadly in the first few years of life. So yeah, that’s not a risk we wanted to take.

Anywho, now we’re delaying my cycle with deregulation until I get my test results. And based on that, we’ll either proceed as planned because I don’t have the mutation. Or, proceed and freeze Day 2 embryos while we prepare a PGT-M

[Deleted User] · May 2021

Oh wow. That is a lot. @acleverusername I hope your results come back benign so you can proceed a little more seamlessly! Did they say yet how soon to expect your results back?

acleverusername · May 2021

@BusinessWife thanks! I called the genetics company yesterday (billing issue) and they told me 2-3 weeks from date of receipt (which was this past Tuesday), but they also said it’s closer to 2 weeks. So I’m hoping I’ll have the results back ~ Jun 8-9.

Forgot to say, big 🤞🏻🤞🏻🤞🏻 for you. I read your update in TWW today and “final treatment, 6 years after starting TTC”add me swallow hard. 😢 🤗

[Deleted User] · May 2021

Aww, thanks <3 @acleverusername it's wild to think after all we've been through, just like that, our TTC time is through, come what may. Funny how our last two cycles just happened to correspond with our Anniversary. I would love to think, iT CouLd Be A gOod SiGn!? 🙃 but of course, we all know how that sort of thing can go... Last cycle ended on my mom's birthday. :/ So. 😬 Just trying to stay positive!

optimistgardener · May 2021

@acleverusername that's a lot to think about and, purely from the selfish perspective of calendars, super frustrating I'm sure, but it's important that you get those test results so you can know what you're dealing with. and your clinic seems really on the ball about lining up the appropriate treatment. I read your post yesterday and spent part of my afternoon sort of sighing for the lost innocence of our pre-infertility journey lives, back when ttgp seemed like a straightforward process. we all deserve advanced degrees in this stuff now (but i think maybe you deserve a phd).

TW cancer stuff. skip if you're not looking to read a novel

speaking for a sec as the daughter of a woman who currently lives with a rare cancer that may or may not be genetic, lemme just kind of gesture lamely towards that uncertain balancing point between Knowing all the Things and Living with Chance. It sounds like you and your partner have already found a good basis for what constitutes the tipping point of risk for you. definitely, avoiding Leigh's disease is important. But beyond that, now you have this awareness of risk that you didn't have before, and that's sort of a weird place to be in. heredity and rare cancers and what it means to live with the possibility that one has passed down a predisposition for a potentially lethal disease, it's a tricky thing. researchers don't know whether my mom's cancer (intrahepatic cholangiocarcinoma, now there's a mouthful) is genetic or not, but my mom is minor-key obsessed with the possibility that it is. (there's some hint of it in our family tree, a couple of cancers that were described in the vague terms of the day that maybe would seem suspicious for ICC given what we now know.) anyway, she walks around with this guilty "what if my kids get this" line of thought that is honestly heartbreaking, and is always trying to chase my brother and i around to do tests that don't really even exist yet and always be hyper-aware of any signs or symptoms. i really wish she wouldn't. why did my mom get cancer? was it a genetic disposition or one of the chemicals or heavy metals she encountered in her line of work or an innocent meal she enjoyed? who knows. because we don't know what really causes this cancer, there are no tests that can guide us. still, i've steered clear of sperm donor profiles where the dude has a family history of GI cancers, just because/just in case, i guess? but the thing i'm always trying to impress upon my mom is that we all pass along all kinds of predispositions to our (hypothetical) children, many of which we will never even know about. Most of us walk around blissfully ignorant of all the various genetic time bombs that may or may not be ticking away inside our bodies. And while in some cases it can be helpful to know (for ex., carriers of BRCA at high risk of breast and reproductive cancers, or in your partner's case, the ability to do potentially life-saving screening to keep an eye out for things gone awry), in other cases that risk just seems like the price we pay for living in this world. if i or my hypothetical kid were ever to be diagnosed with ICC, it wouldn't be my mom's fault (and hopefully by that point available treatments would be far and away better than the present state of affairs). I'm not sure why i've written all this except to nod at the weirdness yh may experience of knowing he's a carrier for a thing. I hope he can carry it lightly or philosophically because the gift of life he would give his future kid is 100% worth the risk.

@BusinessWife i've been thinking of you a lot this last couple of weeks just wishing the best for you and thinking about how strange it must feel to be at this point in your journey.

acleverusername · May 2021

@optimistgardener some deep thoughts there. Thanks for sharing your personal experiences with rare cancers that may or may not be genetically caused. You've encompassed well our line of thinking: with MH, we now know what he has to do in order to keep a close eye on cancers that he may or may not develop given his genetic predisposition. But when it comes to our offspring, it's exactly this:

"hopefully by that point available treatments would be far and away better than the present state of affairs."

Add to that the state of research in 10, 20, 30 years, since - as I've mentioned - the current research into SDHA mutation-related cancers is extremely biased. So, whilst the risk of passing on 2 mutations that could result in Leigh's disease it too great for us, we are hopeful that scientific developments bode well for both MH and our progeny.

Also, this line got me:

...sighing for the lost innocence of our pre-infertility journey lives...

Ain't that the truth? 😕

Thank you also for thinking I qualify for a PhD in this stuff. I'm humbled.

In other news, I got my updated treatment calendar, and the delay isn't too bad. I start Aygestin on Wednesday (6/2), and only have to take it for 5 days (until next Saturday). Then, I should get my period next Monday-ish (although that seems kinda soon, but who knows... when I don't take any progesterone supplements, I'm known to have a 9-10 day LP) and will starts stims 2 days later. Let's see if my body cooperates with this plan.

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