IF Testing/Treatment w/o 1/11

fitzfizz

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: If you could time travel to hang out in any time period, what would you choose? 

car1167

Hi All... I’m a little bummed bc I had pastey cervical fluid which typically mean AF is on its way. SO and I really went at it TTC naturally this month b/c I was between insurance authorization for another round of IVF.

Diagnosis (if you've been): Diminished Ovarian Reserve

Status (WTO/TWW/TTA): TWW

What are you doing this cycle? (Testing? Treatment?): Did Estradiol for a week before AF- then just prenatals.

How are things going?: I had some nausea and weird cramping a few days ago that I thought were really positive signs- but I really think it would be a miracle to conceive naturally based on my low numbers in IVF cycles. I refuse to test until I don’t have AF by CD 29

Any questions?: No- just venting...

GTKY: If you could time travel to hang out in any time period, what would you choose: I would choose the 60s. I think I could get down with the original breaking of barriers and revolutionary youth.

acleverusername

I'm so delighted that we've managed to graduate so many of our IF ladies in recent months. This thread is gonna be pretty quiet. 

@car1167 Welcome back! I don't think you intro'ed yourself in the Newbie thread the last time you were here. It would be great to get to know you outside of your IF/TTC efforts, and the Newbie thread is where to do it. I'm sorry for the "false signs" that had you feeling hopeful. Did your insurance approval come through? It sounds like you've had quite a complicated journey thus far. 

Diagnosis (if you've been): AMA, hypoandrogenic PCOS, Hashimoto's Thyroiditis (I've removed MFI since our RE doesn't think this is an issue any more; she really thinks our problem is egg quality). 

Status (WTO/TWW/TTA): TWW

What are you doing this cycle? (Testing? Treatment?): just waiting for my period to come so that we can get going on another round of IUI. I also convinced my doctor to do a saline sonogram to check for uterus issues. Finally, we have two 2nd opinion consults on Jan 20 and Feb 3. One of them is out of state as we're still contemplating treatment in AZ, where it's 30% cheaper than in the Bay area. 

How are things going?: Doing pretty well over here. We had a really great follow-up call with our RE last week. I sent her SO MANY questions ahead of time, so that she'd have time to prepare and this was the right thing to do. We stayed focused during the call, and got through all of the q's in 45 min. As it stands, we've decided to do another Combo IUI round, this time with Letrazole/Menopur and also starting 1 day earlier (on CD2). I went back through my records and realized that at the first clinic, my RE had me start meds on CD2 and I always had 2 follicles develop. But at the new clinic, I always started on Day 3 and only ever had 1 follicle. My RE didn't think that 1 day would make a difference, but I still pushed for it/she relented. I also asked The Egg Whisperer about it during one of her live shows, and she said that in my case, 1 day might make a difference. We'll see, I guess. The real reason for doing another IUI round is that I want to order some of my IVF meds from overseas and the expected shipping time is 4-6 weeks. So, I'll wait for meds while doing another IUI cycle and – if we're not successful – we'll do IVF next cycle. Unless I change my mind again, that is. 😝 

Any questions?: NATM

GTKY: If you could time travel to hang out in any time period, what would you choose? Oooh that's a tough one; maybe Elizabethean era? That could be fun. I've always admired Elizabeth I's effort to unite the Catholics and the Protestants by creating a new religion. Plus her reign of 50 yrs is nothing to sneeze at. Of course I'd want to be one of the ladies of the court. 

Edited: to add my answer to the GTKY question and also a couple of grammatical adjustments. 

keikilove

@car1167 Welcome to our little group. Sorry you're feeling frustrated.  I looked at your signature and I hope I'm interpreting it correctly: it looks like you got 6 eggs at first retrieval and 7 eggs at second retrieval. Is this right? I would think you still have a shot with your own eggs, as those numbers aren't that low. Have you read "It Starts With the Egg"? Lots of great info about how to increase egg quality and numbers.//I relate to your response about the 60s. I just gave the same answer and same reasons in a conversation with an older family member. He said, "Oh no... the 60s were the worst!" I guess we'd have to be there to know for sure.

@acleverusername Glad to hear that you're doing well and that you had a great follow-up with your RE. Your plan sounds smart to squeeze in another IUI while you wait for the IVF meds to arrive. Of your 2 second-opinion consults coming up, is one of the with the Egg Whisperer? Sorry, I can't remember. If so, I'd love to hear how that one goes.//RE: Elizabethan era--yes to being a lady of the court (versus a peasant lol).  Have you watched any of "The Spanish Princess"? It makes being a lady of the court look like a lot less fun than I'd always imagined--seems like they had little control over their own lives.

Not that much to report but going to jump in withy update this week.

Diagnosis (if you've been): DQ Alpha & Beta match, elevated NK cells & activity (resolved), RPL, 3 blood-clotting mutations, AMA, DOR

Status (WTO/TWW/TTA): TWW

What are you doing this cycle? (Testing? Treatment?): We did a natural cycle. If this isn't successful we do our frozen embryo transfer at the very end of this month or beginning of February. 

How are things going?: Eh. This natural cycle was weird and my resting heart rate plummeted after ovulation, so really not feeling hopeful. Also, we got our results back from our LAD testing: my numbers went up, indicating that the LIT treatment definitely made a difference.  However, the doctor had said that when my numbers got to 50 that we could try to conceive. My numbers came back at 40, so not sure if we should do one more round of LIT....

Any questions?: NATM

GTKY: If you could time travel to hang out in any time period, what would you choose? I’d be interested in the Renaissance era/Age of Enlightenment, and also going back to the time when Africa was the center of the world (trade routes, more gold than anyone, mathematical advancements, etc). That would be fascinating to see.

acleverusername

@keikilove Yay! So glad to get an update from you. Regarding LAD testing, I remember you saying that the LIT doctor you'd been working with passed away due to Covid. But I also recall that the IVF clinic you're using is able to do the LIT treatments? Btw, re: DQ Alpha/Beta match, I asked my RE about getting tested for that, and she said "no" because she wouldn't know what to do with the results (implying that she doesn't believe in LIT therapy even though I've seen success stories of it, and hoping that you will be one as well! I hope this cycle goes well for you given the work you put into it! ;-)

AFM, yes, the appointment on Feb 3 is with the Egg Whisperer (TEW). MH is subtly against it (although he'll do it if I insist) because she charges A LOT for her consult. That said, I think I will get a lot of information from her, so I think it's worth it. I don't want to start throwing money at IVF treatments without being 100% comfortable that the doctor understands my case and has prepared a protocol that's unique and not just "works in 90% of cases" (which is what I got from my RE vis-a-vis antagonist protocol she's recommending.) Oh, and my RE and TEW differ on adequate Vit D levels. My RE think that my current level of 30.3 is fine, as per endocrine society guidelines; TEW wants her patients to have levels above 40. So, 🤷‍♀️. My current clinic is also really bad with billing... today I got an email about outstanding balances and they had $ for each of my cycle messed up (like even what we did in what cycle wasn't correct... 🙄)

laura-kay

@acleverusername I just hopped over to the grad thread to check.  That’s wonderful news for some of our IF ladies!

@car1167 Welcome!  Sorry you had a frustrating month.  F/X that your next IVF round is a successful!

@keikilove I’m glad your LIT therapy is helping!  It’s good to hear from you!

@acleverusername Another round while waiting for meds for IVF sounds like a good plan.  It sounds like getting meds out of country makes a big difference!  Good luck with the consults.

Diagnosis (if you've been): Unexplained infertility

Status (WTO/TWW/TTA): WTO

What are you doing this cycle? (Testing? Treatment?): We are doing a natural cycle and taking a break this month. 

How are things going?: So so.  I’m a little less overwhelmed now that we have had a bit of a break but still not great.  We have a consult on the 28th.  Our doctor wanted to talk to us before we do another round, so I’m hoping it isn’t negative news and that he has a suggestion for things to still proceed ok!

Any questions?: NATM

GTKY: If you could time travel to hang out in any time period, what would you choose?  Early colonial times if it was in the USA.  I’d also enjoy going back to Byzantium.

bumblebee0210

Diagnosis (if you've been): RPL

Status (WTO/TWW/TTA): WTO

What are you doing this cycle? (Testing? Treatment?): Just saw an RE for the first time, starting blood tests

How are things going?: A little overwhelmed. It feels good in a way to be proactive, but it's a lot. 

Any questions?: Yes-- I just saw the RE for the first time (I have a sort of weird RPL history, so it was not clear whether or not it was warranted, but I decided to pull the trigger). She basically told me that if all of my testing comes back normal (which it likely will even though there are SO. MANY. TESTS.), then there are basically two options for treating RPL without subfertility: (1) Progesterone, and (2) IVF with genetic screening. We are not yet ready for (2), but I am wondering about (1). I know there is generally mixed evidence on progesterone supplementation, and I have no reason to think my progesterone is particularly low. The RE was like "we think it is maybe helpful for some people" which is not exactly a ringing endorsement. Do you guys have thoughts on this? Have you had bad side effects? Is it annoying?

GTKY: If you could time travel to hang out in any time period, what would you choose?  I would like to be a *tourist* in many time periods-- early 20th century, in particular, but I would not want to live there. I like modern medicine. 

bumblebee0210

@acleverusername I am impressed/intimidated by your unflagging energy! But I totally understand the instinct to get it right the first time. Hopefully TEW comes through! Second opinions are always valuable. 
@keikilove Glad things seem to be moving along for you. I might PM you sometime since you seem to be the expert on the RPL world, especially the auto-immune stuff. I am just starting all of the testing, and I have already forgotten 90% of the tests they are running on me. 
@car1167 Good luck getting through the 2ww. I keep thinking it will get easier as time goes on but I am still terrible at waiting. 
@laura-kay A break sounds nice-- hopefully you'll be rested up physically/emotionally for the next cycle. 

quiltandknit

Diagnosis (if you've been):  unexplained infertility

Status (WTO/TWW/TTA): WTO

What are you doing this cycle? (Testing? Treatment?): Just completed our workup and got our diagnosis of unexplained.  E-consult on the 25th to discuss our options.

How are things going?: Feeling optimistic because my RE thinks I'll respond very well to treatments.  A little annoyed that I have to wait another 10 days to hear what his recommendations are.  But in that time is my FW so I can keep myself occupied while we wait.   On the flip side, trying not to get my hopes up like I did last month--the TWW and CD1 were rough.

Any questions?:  For those who also have unexplained infertility, what kinds of treatments did you start with and what questions do you wish you had asked sooner?  I don't want to research too much before we talk to him but want to have questions lined up so we make the most of our time talking with him.  

GTKY: If you could time travel to hang out in any time period, what would you choose? Ohhhh this is tough.  Based on being completely sick of COVID, I'd say I'm ready let loose in the roaring '20s!

quiltandknit

@acleverusername  I hope TEW consult is helpful!  I'm of the opinion that more info is usually better, so hope she is able to answer lots of questions for you!  And in the meantime, hoping this IUI cycle brings good news for you.

@car1167 sorry you're feeling frustrated.  TWW is its own special hell.

@keiki sorry for the dumb question, but remind me what LIT treatment is?

@laura-kay Hope the break helps you recharge and make a good plan with your RE. 

@bumblebee0210 hope the testing goes well.  I feel you--it's such an overwhelming thing to get started.

kiki047

*lurking*

@bumblebee0210 my RE's thoughts on progesterone are that it's one of those things that isn't really quantitative, so what might be sufficient for one person may not be for another. He is also of the belief that everyone processes progesterone supplementation differently so I'm always on both suppositories and progesterone in oil. While my progesterone levels have never been low enough to signal a deficiency he figures it can't hurt and therefore covers all the bases. So even though it seems like a bit of a band-aid solution because it isn't proven to be 100% effective in all cases, it is also a relatively low cost, minimally invasive thing to try especially if your labs come back inconclusive. 

Edited for clarity.

bumblebee0210

@kiki047 Thanks-- that's helpful. In the book "Not Broken" which is about RPL, the author (an RE) says she doesn't use it regularly with patients after ovulation (though she does with some after a bfp) because some women have strong side effects, and there isn't much evidence that it does much in the luteal phase. But the impression I got from my doc was the same thing you are suggesting-- maybe it helps and it can't hurt. Have you had strong side effects from using it?

kiki047

@bumblebee0210 yes and no. Because I have PCOS, my hormone levels are abnormal on any given day so hormonal supplementation doesn't affect me as much as others. My theory is that my body is "used to" unusually high levels of just about anything they've given me so far, lol. I already SS like crazy during the TWW so my sore/tender boobs and hot flashes are a pretty regular occurrence. But yes, anecdotally yes, most women seem to have pretty noticeable side effects from progesterone. 

keikilove

@bumblebee0210 I agree with what @kiki047 has shared. The consensus from all of my doctors is that it may help, and it definitely can’t hurt, so why not try it. I’ve read mountains of success stories where all the woman needed was progesterone or baby aspirin to finally have success. (Wish it was that easy for all of us!) 

The author of “Not Broken” doesn’t believe in Reproductive Immunology and will encourage her patients/readers to avoid most interventions/supplementation that many of us actually need. Read her work with a grain of salt. 

ETA: The most common side effects are hot flashes, feeling tired, and early PG symptoms. I’ve experienced all of these— they’re super minor side effects, especially compared to having repeat losses.

acleverusername

@bumblebee0210 I don't have RPL experience, but I do have suspected LPD (shorter luteal phase, spotting during LP) and I've been told that progesterone supplementation – while not proven to be successful – can help. There is still much unknown about how much progesterone is needed for successful pregnancy maintenance. When I was diagnosed with LPD, I looked through some of the research papers and found this one to be somewhat insightful (but it basically says "more research is needed; in the meanwhile, it doesn't hurt"). As for side effects, what everyone else said: hot flashes, higher post-O temps, sore boobs... all signs that trick you into thinking you're KU'ed. Oh and a leaky vagina (if you're inserting it vaginally). 🤣

kiki047

@acleverusername LOL, yes, the leaky vagina is probably the least enjoyable of all the side-effects.  

bumblebee0210

@kiki047 That makes sense
@keikilove Interesting! She does seem very into the "it's all genetic/DOR" argument, which leads very quickly to the only solutions being like "have a good diet" and IVF. I have been PMing with @_orchid_ who has been super helpful sharing her experience as well. My RE seems very into testing, at least, so I will see once we have all of the results where we want to go.
Thanks for both of your input on this!  

bumblebee0210

@acleverusername omg leaky vagina.... that takes me back to the old monistat days. 

laura-kay

@quiltandknit Regarding your first question about what treatments we started with, etc:

I started out directly with IUI with injectables (Gonal F and Ovidrel).  I do wish that I hadn’t taken so much time to get to the point of starting treatments.  It took about 6 months for all my work ups with my first doctor.  They really did an awful job.  I got an HSG that said my tubes were blocked.  However - they even said when they were doing it that the instruments were too big, that they were having a hard time getting it started, etc.  I didn’t even have stirrups so my legs were slipping the whole time.  I asked the doctor if it was possible to get a false diagnosis due to pain and the other issues we had - and he pretty much said that it was so rare it isn’t really worth considering.  We decided to try a laporoscopy that would hopefully allow us to open my tubes.  He got in and found - that my tubes aren’t blocked at all!  The fluid went right through the tubes with no issues.  We had a huge amount of expenses and a surgery to do something that may have been completely unnecessary if things had been done correctly or reconsidered upon my questions. I was so frustrated that I decided to try for another 6 months without any treatment.  It didn’t help that he seemed to have an awful bedside manner and didn’t really say things straight to us or answer many of our questions.  After a long break, I tried a different doctor who helped a friend of mine and started up some more work ups.

Some lessons learned from me for others new in the process: Don’t hesitate to ask questions.  If you get an HSG at a hospital and they say they ran out of medical tables with stirrups - feel free to tell them you will wait until they do! Listen to your heart about how you feel with the medical group you are working with.  My first work up was with my gynecologist office.   I wish I had started with a specialist somewhere else.  If you want a second opinion - feel free to do so.  I wish, however, that I hadn’t let so much time go on before choosing a treatment (about 2 years after the start of my work ups due to my wait and switching to another doctor after a year).  I didn’t have time to start with the less invasive treatments.

Best of luck to you and fingers crossed for you as you start your journey!  

quiltandknit

@laura-kay thank you for the excellent advice!  I'm sorry you had to go through a lot of frustration to get to treatment--that HSG experience sounds awful.  I decided to just start with an RE and so far they've been pretty good.  I like my doctor a lot, so far he has answered the questions I had before I even get a chance to ask them.  He did my HSG himself in the office so I'm confident the equipment and technique were both correct.  A little frustrated with the office staff because it took 4 phone calls from CD 1-4 to finally get the HSG scheduled with him, and I'm waiting almost 2 weeks for the consult to discuss our options.  Crossing my fingers we're able to start treatment with my next cycle on Feb 2/3.  I worry that having only a week between consult and CD1 might not be enough to get insurance authorization, but our insurance is good so I might call them myself to ask some questions.

acleverusername

Ah crap - looks like I've ignored a few folks in this thread! 

@laura-kay Taking a break from fertility treatments sounds like a good plan, while you wait for the next appointment with the RE. Hopefully you can rekindle some of the "fun" aspect of TTC. Sending you hugs of support as always. 

@quiltandknit to answer your question re: first line treatment, it will most likely be Letrazole/Clomid + Timed Intercourse. Is male factor (however small) an issue at all? If yes, doc might recommend IUI (but if no MFI issues, research shows that IUI does not produce more success). I hope this helps. It sounds like you have a good plan for the next 10 days so your follow-up appointment will be here before you know it!

acleverusername

@laura-kay I just saw your thread on the Infertility channel from back in November and wanted to add to the stats your doctor gave you. Besides the fact that those stats are for a wide population like the other person responded, it is also almost guaranteed that it doesn't look at live transfer versus frozen transfer successes. And it also doesn't consider genetically tested vs non-tested embryos. Unfortunately, I have not yet seen proper statistics by age, for all of these difference scenarios, but I have repeatedly been told by different REs that at my age (37), with a genetically-normal embryo, the chances of a live pregnancy from 1 transfer is 65-70%. Sure, it's not 100% (and it never will be since this is an art, not a science). 

I get into a tizzy with statistics since the stat the "1 in 8 couples experience infertility" gets thrown around a lot. 1 in 8 is 12% and sure, that's high especially if you're not aware of infertility at all/don't think that it can be you. But those stats are for ppl aged 15-44!!! For 35-39 - the reality that I'm dealing with - the infertility rate is 20%. And higher for older couples.  

End rant. 

quiltandknit

@acleverusername Thanks!  Male factor does not appear to be a an issue (motility and count were good, morphology was still pending when I went in last week) so maybe we would have a good chance with Clomid or Letrazole +TI.  Although I'm not opposed to IUI if recommended.  I know I can only take Clomid for a limited number of cycles but will definitely ask my RE about the difference in choosing between our TI and an IUI.

acleverusername

@quiltandknit Clomid might also give you mad side effects: mood swings, hot flashes, etc. Recently graduated @runningoncookies really suffered on Clomid. It doesn’t affect me, but it certainly had a very nefarious effect on my lining. My first cycle on Clomid my lining was “textbook perfect” at 8.13mm. The following cycle, same dose, it was already down to 5.91mm. During my last cycle, the IUI was cancelled because my lining was 4.11mm and there’s no chance of implantation when the lining is so thin. So, if your doctor gives you the option of Clomid OR Letrazole, I recommend Letrazole.