IF Testing & Treatment w/o 6.7

kiwi2628 · June 2021

Finally AF came and now I just have to wait like 24 days and it’s go time!

acleverusername · June 2021

@lickastick Thanks so much for that added info! I might reach out to you via a PM. I just saw a functional medicine doctor, and she's recommending a few more supplements, but I don't think it's ones you've mentioned. I'm also going to see my fertility acupuncturist tomorrow, so I'll ask her as well. My biggest fear is taking supplements that interfere with the ones I already take / and - as you point out - IVF protocol, but your message is really hopeful! Also thanks for the book. I will look it up.

keikilove · June 2021

@kiki047 FX that your entire file can go with you to the new RE and that your lovely current RE can pull some strings to get you seen faster. I hope you get some good info at your Thursday appointment.💗

@inthewoods23 I miss seeing you here too! But I hear what you are saying about your rationale for not joining back in weekly. Feel free to stop by anytime.

@optimistgardener Hang in there, hopefully the nuvaring is doing its thing! You might have to deal with mood swings but hopefully no cysts! And also hopefully they can find a spot for you in June like you’d prefer. // I’m glad you found the oldie intros helpful. I almost didn’t do it because I feel like such a debbie downer/my story is so depressing and maybe discouraging to others. or I might just sound like a nut for continuing when nothing’s worked so far!😆 But anyway, glad it’s helpful to know more about how we all got here to the IF thread and why we are pursuing the specific avenues that we’ve each chosen.😉 It definitely helps build community & camaraderie to know each other’s backgrounds.💕

@gingermama29 Hooray, you’re doing treatment again! So glad to hear that you were able to go forward with this cycle after all. How amazing would it be to get a positive on your trip to Italy?!🤞🏽🤞🏽🤞🏽

@acleverusername WooHOOOOO!! So excited for you to get things going!! What do you start tonight? I’m only asking because we are on what sounds like a similar schedule but our monitoring appointments are different. //Thanks for the kind words about self-care. Truthfully, I haven’t been doing a good job of it lately. The workload has been too heavy. I need to do better. Checking in here right now is my mental health break in between work.

@kiwi2628 Alrighty now, look at all this action on this thread! FX that your 24 days fly by!

@daisy0322 It seems like you’ve gotten a lot of really great advice here. As awkward as it may feel, you must advocate for yourself. You are the customer, spending your hard-earned money for the services the doctor provides. You have every right to push for answers and the treatment that you want. Also, I don’t understand why there would be a this-OR-that issue with treatment. It seems like they could easily do HRT/estrogen priming to bring down your FSH, as well as meds to bring on a period and then support ovulation. Unless I’m missing something about the meds not interacting well, it all seems very doable in a case like yours. Also, FSH fluctuates all the time, depending on where you are in your cycle. It’s definitely worth it to ask for new bloodwork. Good luck!

Update:
My monitoring appointment went well yesterday. Stats in spoiler.

She saw 4 follies on my right and 2 on the left, which is what I’ve been consistently showing for the past 2.5 years. I’m hoping there will be even more in a few days since I did estrogen priming previously and that may have suppressed me a bit.

I told the doctor about how many follies I have been seeing (4-5) just by doing Letrozole and low-dose Follistim (75) for my re3cent medicated IUIs, so she wants to try lower stims for me, at least to start out. The thinking is that if I have DOR and am getting about the same number of follies every time, why blast my ovaries with more meds than needed to get that same result? I already started Letrozole the day before seeing her and start stims tomorrow. My first monitoring appointment is this Saturday. I’m trying to save even more money this go-around so am determined to monitor locally instead of traveling all the way back to my RE in MX every couple days. So, I’ve spent almost my entire day today calling around begging people to do my monitoring this Saturday. I did find ONE place on my island that can do monitoring—hooray!—but they don’t have any openings for this weekend. Boo. My own RE isn’t available either but I eventually ended up scheduling with a different doctor at my RE’s IVF practice (I usually see her at her private practice and her nurse didn’t mention to me that the IVF office upstairs might be able to do my monitoring! 🤯) Apparently they monitor all the time for people who are here on vacation so they weren’t surprised by my request at all, or by my mention of my RE being in MX. It’s going to cost me $200 out of pocket for the appointment and another $100 for the flight, so almost the same as a flight to the West Coast. But it’s better doing it in-state and taking just one early morning/ 1/2 day to do it versus 24 hours to travel to the West Coast for monitoring is worth it.

Thank you everyone for commiserating with me about the stress of traveling for treatment. I appreciate you guys listening when I’m really just complaining about a fairly first-world problem. Just some rambling details about my recent travel:

I complained here and then actually got really lucky with this last trip! I left home at 10:30 pm on Monday night to land in San Diego at 6:30 a.m. the next morning. The gate agent gave me my own row so I could sleep overnight. When I landed yesterday morning I did something new to save money: I took the airport city bus straight to the trolley, which goes directly to the US/MX border. The trip was $5 and took less than one hour. (I usually rent a car or get an Uber, both of which take just 25 minutes but cost way more than the trolley!) I was able to walk through the uncrowded border station, catch a $5 cab, and be at my baseline appointment within a few minutes. When I passed back through the border after my appointment there was no wait. I jumped right back on the trolley and was back at the San Diego airport in less than an hour and for just $5. I was able to do some work and eat a good lunch before the flight. They again gave me my own row and I slept on the way home. I arrived home last night at 8 p.m., less than 24 hours after leaving. I felt great! But this morning I woke up with such a killer headache that my body is definitely saying “Slow down. Sleep more. Exercise. Stop stressing.” Duly noted! ✅

Edited for spacing. Ugh!

optimistgardener · June 2021

thanks guys for the affirmation on my little freakout about waiting.

I know July is right around the corner and will be here before I know it... it's more the culmination of all the earlier waiting, i guess.

I might not have gotten anywhere with begging for an earlier calendar day on the cycle start, but I did get my fertility clinic to set up an extra ultrasound halfway through my bc cycle to have a precautionary look-around. I just want to make sure I'm not growing cysts again, or at least that I know about it if I am before I arrive at the clinic for my baseline in early July.. overkill, perhaps? but i'm paranoid now and every little twinge in the general vicinity of my ovary is making me suspicious.

@keikilove just reading about your marathon journey to get to and from your clinic makes me stressed out and exhausted. kudos to you for managing it with such aplomb, and I'm glad you were able to find someone local to do your monitoring. even if it costs almost as much, the value you gain in keeping some of those 24 hours for the rest of your life is 100% worth it. i complain all the time (to myself, mostly, but maybe once or twice to this board) about my 3-hour drive to my clinic, but i will think twice before i complain again! Also re: backstories and support on the board, I am super grateful to have found my way here. I'm honestly not sure how or why i got by for so long trying to navigate all this stuff without it. especially given that i don't have a partner, it's a godsend to be able to talk to people who know what's up, and who are also a wealth of knowledge.

acleverusername · June 2021

@keikilove I hope the next few trips to MX clinic are just as “lucky” as this one! But yes, listen to that good ol’ body of yours and give yourself the breaks it needs. I love what you said about TB being a mental break from work: it’s totally the same for me.

And for my meds, I started Menopur/Gonal/HGH tonight. I think the monitoring schedule difference is likely because I’m doing Aygestin-priming, not-really-the-start-of-my-period protocol. In fact, I just got my full flow tonight, so technically tomorrow is CD1. Monday will be CD5.

@optimistgardener it’s totally human to feel so frustrated with the cumulative delay. You don’t need to justify your feelings, neither to us, nor to yourself. Lean into them. It’s OK to feel sorry for yourself, ESPECIALLY when going at it solo. I personally plan to milk MH for all the sympathy in the coming weeks. Lol.

@daisy0322 is this what your diagnosis is? https://medlineplus.gov/genetics/condition/fragile-x-associated-primary-ovarian-insufficiency/? I’ve been doing some reading on it (cause I’m a nerd!) and sound alike hormone replaced therapy (to increase estrogen levels) might be an option. This is basically what @keikilove has suggested. Btw, out of curiously, will you have your kids tested for this premutation?

acleverusername · June 2021

AFM, totally botched the first night of injections by making myself bleed from not 1 but 2 shots. I’ve never had so much blood when injecting myself. And I’ve injected myself dozens of times at this point.

daisy0322 · June 2021

@keikilove I’m so glad you found a place to monitor closer to you! That sounds incredibly stressful, I was complaining about my new dr being 2 hours away and I’ll shit up now lol

@acleverusername yep that’s it
TW LC and a bit of rambling

my personal risk for having an effected child is 12% for a boy and under 6% for a girl. We won’t do anything that put the baby at risk during pregnancy so like a amino for example. And it’s a personal conviction that we wait to we if they are developing and hitting milestones to test them because in our thinking they are more than just a diagnosis (and early dx does change any sort of outcome) so we want to get to know them before we look for anything wrong with them. Luckily both our little boys are very advanced (my 3 year old can do simple addition and is teaching himself to read and my 1 year old is ahead of him at that age) and it’s not been a concern. The pedi even said not to worry about it. It’ll be their choice to find out when they are older if they are carriers however with how the mutation passes down their sons would never have it and their daughters would could only be carriers at most. It’s their daughters children that could be an issue. our conviction if we had a daughter would probably be similar but if she chose to find out and was a carrier while she was a teen wanted to do egg retrieval it would be her decision. Honestly I probably would’ve done it at that point if I knew and I would go early encourage it because GIFT would even still be an option at that point but I could go more into my feelings about that but I’ll spare you lol I hate getting into a lot because it’s just how I feel for us personally not other people

keikilove · June 2021

@optimistgardener I feel so much for you doing this on your own.

We have had several ladies come through here who were also single moms by choice (SMBC) or in same-sex relationships, and they'd shared the unique challenges of their particular paths. I was the perpetually single girl for years and years before meeting MH, so I feel like I can relate to a lot of what you share here. Please don't censor any complaining on my behalf, hahaha, we all have our own difficulties that we should be able to vent about in this safe space.

@acleverusername Oh that's right! I forgot about the luteal phase start you are doing this cycle. That is so exciting, I can't wait to see how that works for you. FX it gets you stellar results! I hope you are ok after the bleeding scares and that you don't get any bruises. You can safely put arnica gel on after to help with healing. // I forgot to mention about my baseline appointment that I also picked up all my meds for the entire stimulation cycle while at the doctor in MX. It cost $1,068 USD, and although it was a big chunk to drop at once, I am happy that it wasn't the $3-$5,000 that I keep hearing about others spending. In my very first swim cycle with my local RE, my insurance covered lots of my meds, and I still had to drop $2,600 to cover the rest of the cost. It seems like highway robbery in this country.// ETA I'm taking one vial of Pergoveris (an FSH/LH combo med) and 5 mg Letrozole, plus 6 units HGH daily. We will see if I have to add an additional vial of Pergoveris or add Follistim after a few days of stimming at this lower dose.

@daisy0322 & @optimistgardener Those driving distances are still long too! As people used to often say here, "This isn't the pain olympics" or I guess in our cases we could say, "This isn't the travel olympics".

We are all allowed to complain about the drag it is to get to our doctors hahaha.

inthewoods23 · June 2021

@keikilove I may start popping in and participating next week since I'm thinking more about what I could do to reduce inflammation. Kind of a diagnosis? *shrug* Since when have flights from HI been $100?? Are you some kind of VIP mega-platinum airline member? lol

keikilove · June 2021

@inthewoods23 Yes, please do rejoin us!

Hahaha! Well, in fact, I have earned platinum status for the past 2 years thanks to work and medical travel, and the fact that the airlines have cut the qualifications in half to earn that status more easily!

But no, the flights have been running around $300-$400 to the west coast on the cheapest days lately. So I meant the total cost of the appointment plus the inter-island flight is about the same as the price of a ticket to the west coast. my bad.

inthewoods23 · June 2021

@keikilove ahhh okay inter-island flight, gotcha! I likely read it wrong

$400 is still better than what I paid last year for flights to Phoenix for my cousin's wedding. Granted we did buy them kinda late so that easily added a couple hundred to our total. $800 for a late February flight! Yikes.

optimistgardener · June 2021

thanks @keikilove i really appreciate what you say.

i had to spend a day ruminating on the phrase "single mom by choice." i like that the phrase underscores single women's agency, because i think it's important for women to know that they can be moms, whether or not they find a partner with whom to share that journey (yo, lurkers and future deep-divers in TB message board histories! you got this!). but i guess what stops me from identifying very easily as a single mother by choice (apart from not yet being a mom, of course) is that neither my status as a single woman nor my drive to motherhood feel very much like choices. the former is just the way my life played out, despite my best efforts in the hellscape of online dating, and the desire to be a mom feels hardwired into me. of course, i don't have any alternative terminology that would work better!

i do hope to find a partner one day, and am even willing to concede that i may have to reenter the dating world in order to find him. i just expect to wait on that until such a moment as i am no longer single-mindedly chasing my remaining eggs down the ivf rabbit-hole!

bumblebee0210 · June 2021

Hey all! I am super busy with work this week and basically benched this month (we decided not to try this month at least and hope this ER will help with our fertility preservation goals). So excited to see so many starts! I am rooting hard for you all.

Also @kiki047 I'm so sorry about the bad news on the embryos. I know the phrase "bad luck" can be rage-inducing for those of us with RPL, but I would be careful not to over-interpret those results (and assume they would be the same next time). When I talked to the genetic counselor she really emphasized this-- told me she just had a woman who had 5 blasts, all abnormal, and the next cycle 7 blasts, 5 normal. I hope this new doc will be willing to go the distance with you.

@daisy0322 One thing my RE said to me that might be helpful in your situation is that almost all the data we have on the relationship between outcomes and hormonal levels is for infertile women. It makes sense-- most women who don't have trouble getting pregnant don't ever get their FSH tested. She said for that there are lots of women running around with DOR, etc who get pregnant just fine and don't need intervention. I think those levels are good at predicting how well IVF will work (though still not perfect!) but I think you should find a doctor who will not be so phased by the numbers, since clearly you are capable of making blastocysts. GL!

acleverusername · June 2021

@bumblebee0210 Hiya! Missing your ER updates lol... jkd. When do you start Estrace / dexamethasone?

@optimistgardener I have so many thoughts about how our stories are woven along the traditional fairy tale storylines... girl must meet boy before babies. And, you're totally right that SMBC has a bit of "you didn't find a partner to share you life with" baked into it. Let's figure out a better term!

AFM, small update: I had bloodwork yesterday (after 2 days of stims) and my E2 was only 68. That's good IMHO, since it means there isn't one follicle that took off. On the other hand, that might mean I'll be stimming for a while. My first monitoring u/s is on Monday morning, and that should be much more telling. I'm already looking like a beaten up pin cushion since it turns out that fish oil is a natural blood thinner. Ha!

laura-kay · June 2021

@daisy0322 Welcome!

Quick weekly check-in:

Nothing new here treatment wise. We are having a natural cycle this month.

TW:

My baby niece (our god daughter) was baptized yesterday. She is a beautiful little girl! I struggled some during the baptism service though. Normally I am pretty good with kids but she is was crying a lot while I was holding her during the sermon, and didn’t cry when my husband held her. She cries for most people - definitely a mama’s girl, but a part of me was thinking….shouldn’t I as a woman be the one who can comfort her more - and somehow insecurities with not being able to have kids came along with those feelings. It’s a silly thought really - my other god daughter loves me holding her and she and my nephew love spending time with me, not to mention that my turn to hold her was after the baptism part, which can be difficult for them (@acleverusermame - I’m sure you understand that!) - but it seems like infertility sneaks up on me. My sister in law said to not take it personally - that to babies - mothers literally mean their survival, which is why they are so comforted by them. I’m thinking…I’m not sure if I’ll ever experience that bond.

laura-kay · June 2021

@acleverusername good luck! Glad you are moving forward this week!

@kiki047 Hope all goes well with the new doc, and so sorry to hear about the last cycle.

@keikilove great to hear that a monitoring place is closer to you now!

@optimistgardener

Hang in there!

@gingermama29 welcome back

(I know I am missing some - but I’ve been rooting for you all!)

laura-kay · June 2021

Wow, I really rambled in the spoiler. 😂. Please excuse all the run on “thought” sentences. 😊

optimistgardener · June 2021

@acleverusername what about Hopeful Mom Flying Solo (HMFS) or something. I dunno, I've never been any good at coming up with catchy titles! But maybe someone else will have a good idea.

@laura-kay thanks for the update!

I sympathize re: hanging out with other people's kids. I often struggle to "feel natural" in my interactions. As much as I want a kid, I am not always very good at interacting with them. Maybe my over-eagerness? I've been known to be "that person" who winds up making the baby cry, somehow, and it's clear that some little kids think I'm a weirdo. I've always hoped that if I had my own kid, it would feel less alien. Or at least, I would get over that alien feeling in a big hurry?

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