Calm before the storm

This will be a quick post. We are heading out if town for 2 day to just chill out. I am scheduled for surgery for Tuesday so just trying to relax a little before I go inder the knife. Thrilled I was able to get in for surgery when I could- otherwise we'd have had to wait till end of Septmber if I did not take the appointment they had. 

Hoping that there really is hydro in there and that's been our issue over these 5 transfers. RE says I can keep the tube thats not inflamed though the OB mentioned taking them both out. So before I go in I'll need to make that clear. Yes obviously i'm delusional and think there's still a chance we could get pregant on our own!

SIRM Consult Recap - take 2

In an effort to feel completely comfortable with our plan moving forward, I decided to get some additional consults. Again. It really baffles me that this area of medicine can garner so many different opinions. This was actually my second consult with Dr. Peters. I had spoken to him right before our second IVF cycle and he actually seemed to have the same insights as my RE so we went ahead and stayed at the clinic we are at.  This time around though, the consult was $200 bucks - last time it was free, so that was a bit of a bummer. I do know his time is definitely worth $$ but to go form $0 to $200 seems a little high.

Basically he advised that I for sure go through with the lap and hysteroscopy combo. If I truly have hydrosalpinx then after it's fixed, we should just go ahead and transfer again.  PGS tested embryos are as good as it gets he said, but hydro can decrease your pregnancy rate by about 50%.  So that 70% success rate I thought we were working with was really only 35% when you do the math.   

If hydro is not the issue when they get in there and open me up, I should probably get retested for APAs and NK cells. He said that because I've been pregnant before, it's highly unlikely that I am experiencing an immunologic implantation issue, but yet it's not out of the realm of possibilities.  Apparently, because my body has been introduced to so many embryos over the course of my fertility treatments, it's theoretically possible to have developed an autoimmune or alloimmune issue over time. If hydro is not the issue, he'll test me for both those things.  Since I don't have any markers for other immune related issues based on my testing from 2 years ago, those are the only tests I need to repeat. If NK cells comes back positive (alloimmune), then intralipid IV infusion would be the course of action. If APAs are positive (autoimmune), then baby aspirin plus lovenox or heparin is the answer.

I asked about lupron depot.  He said he doesn't really do it and doesn't know if it really helps.  He did say that if my NK cells came back positive then the lupron depot might help quiet those down by suppressing the estrogen, but he wasn't overly enthusiastic about that option. 

I asked about the endometrial receptivity array to test timing of transfer. He said its new and he doesn't have that much experience yet with it thought he's planning his first next month. He thought my current RE (not a believer) might be open to this testing though. 

I ought to keep any eye on AMH and FSH if we're planning any more stim cycles- the ever present biological clock issue!  Stim protocols, egg #s, blasts and # of normals all look really good so no changes suggested there. No need to consider egg donation yet which is generally reserved for DOR patients. 

He was super nice on the phone and our consult was about 35-40 mins. I would definitely feel comfortable cycling with him.  If I want the intralipids,  I would need to cycle with him and transfer my embryos. If I did cycle there, it sounds fairly easy for an FET-maybe only 3 trips total including 1 for the blood work, 1 for an ultra sound to check lining and then another for transfer.  The clinic is about 4 hours away so it's not completely out of the question that I could do this, it would just be a big commitment.  The intralipids could be done here at home.  I would only need 2 because E and I are not a DQ-HLA match. 

So here we stand. I am considering getting the blood work done regardless just for peace of mind. But that would still entail a day of driving 4 hours to NJ and then 4 hours home. This doesn't sound appealing at all.  My current RE already mentioned (before we knew about the hydro) that he'd be willing to add the Lovenox and/or Heparin so if I can cover that base without doing the testing, is it worth it to just risk that my NK cells aren't elevated? 

Who knows the answers here?  Of course, if hydro is not found, well then we have an even bigger incentive to get tested. I could also try going back to the one and only local RE who is an immune system believer and see if she'd test me again in the meantime. So many questions, so many contingency plans. I can barely keep my head above water these days.

I never imagined this reality

I have been gathering medical records for second opinions coming up and seeing that we started this journey for baby #2 just about 1 year ago in September. Back then, never in my wildest dreams did I think we'd be back here. Starring down the barrel of another laparoscopy, with 5 blasts transferred, 20K + in the hole. How in the hell did we get here!?!?!

I measuring my life in cycles again. Somehow, I'm back on that hopeless, hope, despair, depression, hope roller coaster again. I thought when C was born, I had paid for my ticket off that ride.  Now it's starting to piss me off that I have to do all this again. I hate it, and maybe I'm more resentful this time around. 

As I trudge along through the infertility sludge again...my docs finally talked about me having the surgery. So, next week I have a consult with my OB to go over things and hopefully pick a surgery date. I suppose some time after that, we'll reevaluate and see what my RE thinks about moving forward. 

I did ask him about doing the Lupron Depot and he said he would only want me to to do 1 shot in conjunction with birth control pills directly prior to the FET - huh? So that leaves 100 more questions I suppose.  Would that even be enough to reset my lining? I've never heard of this protocol with BCPs?  What in the heck is he thinking? 



 

Where did I leave off?

Sorry to my 3 readers for leaving you hanging. So much has been going on, it's been difficult for me to process everything at once.

Basically, my WTF phone call consisted of me feeling so terrified and my RE offering suggestions that I thought we could have done during my previous (much cheaper and easier) FETs but had refused to say we needed.

He offered that we might not be catching my lining at the right time so perhaps we need to adjust my medication (estrogen and progesterone) during an FET.  Well, gosh, couldn't we have tried that at least once? From what I gather about adjusting these meds is the key is finding the implantation window for your embryo. There's been some studies done regarding the endometrial function test and what you can gather from testing the lining. My RE never mentioned this test, but from what I've read - he's basically offering some of the same treatment that one would offer if we weren't "catching the implantation window" at the appropriate time. Only thing is, we'd be guessing again. So he's suggesting another FET of one embryo at a time in case we need to adjust meds.

6-day transfers have slightly less pregnancy rates than 5-day - BUT I am totally discounting that theory. My reasoning? A 5 day blast means the embryo progressed at the correct rate. We only transferred at day 6 because of the PGS results, not because the embryo was behind. In fact, on day 6, my embryo was fully hatched which was exactly where it should have been.  AND knowing it was a normal embryo should have made up for some of that statistic.

He didn't think I needed a hysteroscopy.

He didn't think Metformin played any role.

Based on my stims, retrieval, embryo quality - I should be pregnant by now. His words, not mine.

We could try a blood thinner.

We could do the biopsy again and see if it helps.

No way we need donor eggs right now. No way we need to spend money on a surrogate right now either. 

Lupron Depot for a few months might help. We didn't discuss this fully. 

We could add more steroids - I've only been taking 5mg. (Though I'm positive this is not our smoking gun).

After no real answers, I felt terrible that day and the next. I was basically shocked still that we had 2 more normals.  I was getting over the sadness and anger of what could have been - my other embryos. My body is killing them.  Why was this happening again? And in fact, why is it more difficult than the first time around. I've done 5 blast transfers. With C, it only took 3! 

So, I was feeling out of control. I requested a consult over the phone with SIRM. That's scheduled for August 26th. I have a consult with Dr. Braverman scheduled for the second week of September. 

Then I spoke with E who was out of town for his first week at his new job. He suggested we need to take back control and not move forward until we're comfortable.  We discussed taking a month off. I agreed. E needs to focus on work, I need to give my body a rest. We even joked about trying naturally this month.

So to take back control, the next day I emailed my nurse and said we understand RE's reluctance to try the hysteroscopy, but we're insisting. How do we go about this?  I received an email later that day said RE would be happy to do this but he wants me to have an HSG first. OK, so I was already on CD5. I needed to be on pills to do the hysteroscopy and HSG. I could start them that day if I wanted. So that's what we did, I took the pills and scheduled the HSG. It was Friday. 

This was my third HSG so I knew what to expect. It was uneventful until the very end and the nurse explained she thought my one tube was emptying but it looked a little inflamed. So, I was given a RX for antibiotics and sent on my way.  I honestly didn't think much about it until I got a call from my RE later that afternoon.  Low and behold - inflammation detected on my left fallopian tube. He said he was surprised. The tube looked similar to the last HSG (3 yrs ago) but with maybe a little inflammation. With hydrosalpinx, they see decreased pregnancy rates and not necessarily NO pregnancies. So with C we could have gotten really really lucky and the inflammation could have been there all along or it could be new.  He thought this could definitely be affecting our cycles. My heart sank....I had requested an HSG after FET #1 failed. Then again after FET #2 failed....and again after....well you get the point. I should have trusted my instincts. My RE should have been BETTER.

You trust your doctors to know the answers, but with ART and infertility there's no such thing as a sure thing. So here we are.  He wants me to have a laparoscopy and hysteroscopy combo. He called my OB Friday and I'm just waiting to hear what the next move is. We'll see what happens next but a lap is a longer recovery - a few days vs. a few hours - than a hysteroscopy. I'm certain there's something going on in there whether it's more endo, inflammation, scar tissue - something.

This might not be our smoking gun that I've been on the hunt for but at least we'll feel better about cycling again once we've checked this box. Literally. :)

SHOCK and Ahhhhh - crap

We have 2 additional normal embryos.   My WTF phone call was yesterday.   I'm not even sure where to start. I'll try the beginning, but it was one of the worst calls ever and I'm still fuming from it all.

My RE starts off saying we have options with 2 more normals. I stopped him right there...wait, what?!? We have 2 more normal embryos? I had no idea. He thought I knew. I guess my nurse (who rocks) was supposed to tell me. I think my RE just forgot to give her the results because she's really on top of things.  

Uhh, that means 75% of my blasts were normal. That's actually better than someone in my under 35 age group. HUH?

What this meant to me was: MY RE HAS SO FREAKING CLUE WHY MY IVFS ARE FAILING.

to be continued....

crushed

the tears keep coming.

i am stronger than i ever knew i could be,

but i am so f*cking tired of being strong...

Veteran IVF-ers, Have You Seen This?

I'm a planner, researcher, and review reader by nature so prior to picking out our second clinic (where we've found success) I of course scoured over the SART data.  Who does the most cycles, what are their success rates? I created spreadsheet after spreadsheet to help compare clinics, knowing that there were of course things that could not be compared.

Upon embarking on our journey for #2, I once again looked up my clinic's recent stats.  And most recently when we were deciding whether or not to do PGS, I also looked at how many cycles they completed.  It wasn't until just now though, that I went back to the SART site and saw a disclaimer that I've never seen before.

It states: "The data presented in this report should not be used for comparing clinics. Clinics may have differences in patient selection, treatment approaches, and cycle reporting practices which may inflate or lower pregnancy rates relative to another clinic. Please discuss this with your doctor."

WTF!?!?!? Of course I knew in the back on my head that we weren't always comparing apples to apples here with clinics, but now SART is calling it out.  As if we infertiles didn't have enough on our plates, they're telling us there's a whole slew of data behind this data that they're not telling us. We're being misled.  I guess in the end, it's better that we have the disclaimer, but still - it leads me to wonder why SART even posts data then in the first place.  I mean if there are so many variables as they've described, they're basically telling people that their data can't be trusted. It's useless. 

Emotionally Out of Control

I can't seem to get a handle on my feelings right now. Everything in my head is telling me that this cycle failed. But my heart is holding out a tiny bit of hope. And now, I confirmed what I had thought previously - I've managed to bring E down with me.  Last night, I told him I needed him to be optimistic for us both but I could tell he was straining to do so.

I want test day to get here but at the same time I don't. I'm not ready to face the reality that this didn't work. My hard work, the week-long recovery from my most painful egg retrieval yet, the drama of transfer day etc.  I feel even more lost and confused now than I did while we were trying to conceive the first time.  With no news yet on my remaining 2 embryos, I feel like we're floating in no man's land again and it's making me crazy.  IVF worked before for us, we have a PGS normal "perfect" embryo - THIS IS SUPPOSED TO WORK. Yet, I can't help feel my body telling me this didn't. 

I have more fight in me I suppose to keep trying, but what does that mean? Does it mean we research going to another clinic? using donor eggs? donor sperm? a surrogate? embryo adoption? traditional adoption?  We have 2 more cycles covered by insurance we can use only for my own eggs and E's sperm.  I'm guessing we'd try one last stimulated IVF, but I'm not so certain we'd stick with my clinic, unless there was some serious digging in to find the cause of these repeat implantation failures by my current RE.

If at least 1 embryo comes back normal from the PGS testing, then well, I'm at the norm. And if we can assume the "norm" for my other batch of embryos from C's cycle then out of 5 blasts, 2.5 were normal. We know C was a normal embryo and that leaves us with 1 or if you stretch it, 2 other normal FETs that did not work. In that case, something is up with my body and causing these failures. 

I am tired, I want to be happy. I look into C's eyes every morning and am in awe of what a miracle he is for us. His voice, his toes, his hair - I love that little boy to pieces.  With each cycle that fails, I'm mourning a loss but trying to pick myself up to remember what I have. 

When to Test?

After every cycle, I always ask E when he wants to test. He always says, "Well whenever it's going to be reliable." UGH, well it's likely reliable now as I'm at 6dp6dt or 12dpo but it's still not out of the realm of possibility to get a false negative. Highly unlikely though.  The HCG trigger is likely all the way out of my system by now so there's no worry of that. It's more a matter of how much longer do I want to continue to hope for. 

Taking the progesterone meds this time around is much easier so it's not like I'm even being tortured by giant PIOs up until the test. Suppositories are a piece of cake compared. Also, I had hoped to wait to test until after I had some news about my 2 remaining embryos - of course hoping that one of those would be normal and I'd have something to cushion the blow of a negative HPT. I don't think I'll get the results back before Thursday.  So when should I test?

I went back to look at all my past cycles to see when I tested previously to check:

IVF #1:  Negative HPT at 14dpo (recorded constant cramps from 12dpo onward).
FET #1: Positive HPT at 16dpo with "perfect beta" at 19dpo (chemical, no cramps recorded)
IVF #2: Positive HPT at 15dpo with great beta at 17dpo (recorded cramps at 12dpo, success!)
FET #1: Negative HPT at 14dpo (cramps remembered at 11dpo)
FET #2: Negative HPT at 14dpo (recorded cramps at 9dpo)
FET #3: Negative HPT at 15dpo
FET #4: Negative HPT at 10dpo and 14dpo (cramps remembered at 9 or 10dpo)
IVF #3: ?????? cramps at 10dpo.  When I have these 2-3 hours of cramps, it's never a good thing.

 So here we are and I'm pretty sure I've convinced E that we're out as well.  He looked sad when we discussed things yesterday briefly. I ought to wait until Wednesday at least which is 14dpo but I think I'll stretch it one more day to Thursday morning.  The FRERs are in my Amazon cart and will get here in 2 days. Doing my best to hit "order" until tomorrow morning so I won't be tempted to test ahead of time. The things we do, right?

Cramping and Insomnia

Neither are fun. It's 11 pm and I should be getting my rest while I can because I'll be up half the night dealing with C's hand foot and mouth virus. Poor guy didn't sleep much last night so neither did we. I am expecting similar events to transpire tonight but I can't seem to escape my body or my mind right now. Usually when I need an escape it's wine or hot baths (lots of times together) but they're not allowed in the TWW which is cruel. So I'll settle for Tylenol which hopefully will ease the cramps so my mind can rest. Might need to make it a double whammy and go for the Benadryl too.

Cramps are not a good sign in my long infertility history. They're bad bad news and I feel so crushed in this moment knowing how high the hopes were. How high they still might manage to get over the next tortuous week. I felt oddly nauseous earlier and of course the hope-o-meter went thru the roof. Now I'm sure it's over and resenting my early optimism. Stupid.