IVFers that have BTDT, need your advice :)

Jodee37

warning: this is going to be EXTREMELY long. if you read the whole thing i'll owe you some double stuf oreos.

DH and i saw RE yesterday. he seemed nice and intelligent. we reviewed all my history, DH's history, my surgeries, bloodwork, everything. RE said OB was right to tell me IVF is our only option for a successful (and safe) pregnancy. i asked him if i needed to take out my other tube, he said he only does that if i have hydrosalpinx because the fluid will kill the embryo. i asked if there was a chance that after he implanted the embryo in my ute, could it travel north and lodge in my remaining tube? he said anything is possible, however it's extremely rare. he recommended i leave it in, but it was my choice. if i choose to take it out that means another laparoscopy and recovery time. he said doing an HSG would be of no benefit, all it would do is show if the tube is patent. he said the tube looks awful, and just because it's patent doesn't mean it will function correctly, that i have a ridiculously high rate of having another ectopic. he showed me the pics OB took while in surgery and he said he can't even identify the parts of the tube, it's that bad. 

moving on... as for my bloodwork, he said i might have tested positive for the ANA solely because the labs were drawn while i was pregnant. he was unimpressed with the mild + for cardiolipin AB. he wanted to re-run them as well as add a few more tests checking for things like Factor V leiden, protein C and protein S, etc. i think those are things that are related to preg loss. he also wanted to test marty and i for karyotype. ? is that genetic testing? he was talking about chromosomal translocations and i got so confused. he also wanted to do a SA on DH.

then he started his sales pitch. and i say sales pitch because he sort of reminded me of a car salesman when he started in on this. he talked us through the IVF process, the sequence of events and meds, monitoring schedules, etc. his office only performs ICSI rather than letting the sperm swim around the egg in a dish. he said they do this to insure fertilization, because he has seen it happen when a gazillion sperm swim with the egg and nothing fertilizes. on day 5 of their life they shave off a few cells and send them to a lab to run genetic tests. the point of this is to ensure the eggs to be placed back in my ute are not abnormal. when they get the results of the genetic testing of the embryos 1 day later, they freeze the good ones. i would then stop meds for the rest of my cycle. i can then transfer back 1 embryo the next cycle or 4 years later if i wished. they don't do fresh transfers (because they don't have the results back at that point and they don't want to put back a bad embryo. he showed us his lab's current statistics on live births per embryo transferred (in my age group he has a 88% success rate). and he decided right there that he wanted to do a vaginal u/s to look at my current follicles. (which was interesting because my OPK that morning had turned + and sure enough i had a massive mature follicle on the right about to release. those opks are reliable!) not sure how important the u/s was, he was looking at my lining too i guess. so after everything he said the ball was in court. if i wanted to take out the tube that's fine, just come back when i'm ready.

they gave us 1937362 pages on consents and information. including a fee schedule . :::heart attack:::

and that was that. i am so overwhelmed. marty and i talked and we are in no rush to do anything. we agreed to do the labs and then maybe see a different RE and see what their office is like/what their procedures are. what i noticed is some Reproductive centers bill in packages (a flat rate will include all u/s, bloodwork, blah blah) while others offer reduced rate but then nickle and dime you for every lab. it's SO MUCH to think about. and looking at the cost... how am i ever going to afford this without crippling our lives financially.

So after this novel i really want to hear your opinions. having BTDT what do you think is necessary and what do you think is fluff? it's so much, i don't even know where to start.

KC1212

Just want to offer (hugs). @Momarazzi007‌ has done IVF and @Mrs Castillo‌. Hoping they can give you some insight.

freakyfast

So I want to say that we did the genetic testing on the embryos.  You are correct in that you have to do an FET because they results are not back in time to do a fresh transfer.  (Our results were back in less than 2 weeks).  We had seven embryos that fertilized and started to grow normally.  After our testing we had ONE that was normal.  The other 6 all had abnormalities.  I do think that was the best money we spent, and would do it again.  I would have miscarried 6 out of 7 times, or they wouldn't' have taken. So if there is anything I can offer is to do the genetic testing. 

freakyfast

Also I was told that having a damaged tube in, does increase the chances of an ectopic, even with IVF, especially if you have had one before.  I had both removed, one was a hydro and one was damaged from an ectopic. This was all from endometriosis. 

Jodee37

@freakyfast thanks for your input. i have also read that having a damaged tube in place while undergoing IVF can result in ectopic. that's why i was asking him if he thought i should have it removed. glad to hear you rec the PGS testing. did you also have your(and YHs) karotype run?

did you guys do ICSI or let the sperm swim on their own? i guess i am wondering... if DHs sperms are fine, why do we need ICSI??

and did you have your eggs tested for DOR? he made no mention of doing CD3 bloodwork or u/s on CD3.

freakyfast

Jodee37 - Yes to all of the above.  We did have the karotype testing done.  We did do ICSI, and DH is fine, but better to just get those guys in there than have to leave it up to them, I suppose. 

I also did have the testing for DOR and I can't remember my numbers but it was low.  All of my blood work for that was done on CD3.  

As far as your tubes, my RE would NOT do a transfer with the hydro in there AT ALL.  In fact he said that once he got in there if the other tube was gone, he was going to take it. (We didn't realize that my ob-gyn took part of the tube when he removed my ectopic, because he didn't tell us he took the tube, he told us he only took the pregnancy, but that is another story) My RE did say that with damaged tubes your chances of ectopic go up significantly.  He gave us a 70% chance without my tubes, and a 20% with my tubes.  

We did the first half of IVF, we had the retrieval, then did testing, then my RE removed my tubes, now we are doing our transfer. FX here in less than 2 weeks. 

pettycrocker

Ok- pertaining to the ICSI, do the ICSI. We have no known issues (unexplained IF) our first cycle we did half icsi / half natural, our natural embryos did not have a great fert rate.. we had a couple where 2 sperm fertilized the eggs = no good, 1 that did nothing at all, and 1 that was fine so those were the stats out of 4 natural, all the ICSI were perfect. That's not to say you would have any issue with the natural fert, but IMO it's just better to go with ICSI than to risk it, you know? 

IVF has the highest rate of ectopic pregnancy, at 5%. My first IVF was a day 3 transfer and a BFN, second IVF (all ICSI) was an ectopic pregnancy (unknown location) so basically 1 or both embryos floated out of my ute, out of my tubes, and the Drs speculated that they may have attached in my intestines somewhere, I had to do a round of chemotherapy to terminate the pregnancy. IMO if you are going to be investing a tremendous amount of money, I'd take out the tube, just to have a little more insurance on your cycle. 

Also, everything your Dr said sounds wonderful, but there are so many little, stupid factors that can screw up your IVF cycle. There's no guarantee you'll make it to retrieval, much less make it to day 5 testing. It really irks me when Drs make it seem like it's basically a guaranteed thing, when it's far from it. I'm gearing up to do IVF # 3 in a couple months. 

Good luck! Let me know if you have any other questions. I've done a long Lupron cycle, and an Antagonist cycle  

Jodee37

@freakyfast - i'll be keeping my fingers crossed for you in your upcoming transfer! how exciting! in the back of my mind i really believe i should get this other tube removed. i feel like if i'm investing so much of my time and money and emotion on IVF i should give myself the best possible shot. andplusalso leaving in that tube opens the door for an accidental conception which would undoubtedly end up in ectopic. i don't want to take that risk. (and i won't do BCPs for the rest of my life)

@mrs castillo - thanks for your input! you bring up some really good points. DH and I were on the fence about our need to do ICSI, since we haven't had a problem conceiving, our problem is keeping the pregnancy. this makes me think i have an egg problem, or maybe something genetic.  and you're right, the RE made it sound so cut and dry. he didn't even bring up the chance that the cycle would fail. (again, car salesman feel.) 

DH and I talked some more and we are going to see another RE. We just need to feel comfortable and this guy left us with a funny feeling inside. It felt very much like we walked in, had our consultation, u/s and then BOOM here is the payment information and bloodwork slips, call us when you're ready. maybe we are too naive but we felt weird.

freakyfast

If you have any other questions just let me know.  (I do think you should look into having it removed too) If you don't feel comfy with him, definitely go somewhere else.  Funny feelings are no good when it comes to so much money and something so precious.

ConstanceGoodspeed

I agree with what everyone else said.

I will add that my RE gave us all the forms and lab slips at our first appointment and told us to call on the first CD1 that we felt ready. For us, it was the very next cycle. But I can see how some people might need time to prepare emotionally, straighten out finances, or seek a second opinion. You would need all of the information and forms from the RE in order to do that.

Jodee37

@ConstanceGoodspeed‌ I'm a bit relieved that I wasn't the only one with that experience at the RE, it makes my RE seem less of a car salesman. I ended up calling another RE for consult but won't be getting in until forever, May 20! Ladies... Do you think it would be okay if I posted on the Infertility board (with appropriate warnings in the title)?? I am so grateful for your input, and I would like to hear more, just thinking there are a bunch of women over there doing IVF. But I don't want to offend or hurt anyone. TIA!

pettycrocker

Jodee37 said:

@ConstanceGoodspeed‌ I'm a bit relieved that I wasn't the only one with that experience at the RE, it makes my RE seem less of a car salesman. I ended up calling another RE for consult but won't be getting in until forever, May 20! Ladies... Do you think it would be okay if I posted on the Infertility board (with appropriate warnings in the title)?? I am so grateful for your input, and I would like to hear more, just thinking there are a bunch of women over there doing IVF. But I don't want to offend or hurt anyone. TIA!

Yea, I think you would be fine as long as you put up the ticker warnings. I lurk over there a lot, but mainly post here. 

lucky7wife

I am doing IVF for a similar reason as you would - my one remaining tube is too damaged.  If you think your problem is keeping pregnancy and getting implantation to occur - then I would have the tube removed.  The small setback upfront that the procedure would cause is worth avoiding the headache and failures it could cause later.  Plus, if you do conceive and get an eptopic, there is no guarantee that you won't also loose your ovary in the removal of that.  

Hedge your bets I guess. 

We've seen two REs and both gave us all the info for IVF upfront.  It can be a lot to take in all at once, but most people want to know all that is involved I think, so they just hand it over right away. 

We've had two retrieval cycles with ICSI, but not with genetic testing. For us that would be an extra $6k per round, and since we have no known genetic factors, we rolled the dice with it.  That being said, we've also had two failed cycles, and are currently in our first frozen cycle 2ww. 

Freakyfast makes a compelling argument for the genetic testing though. 

Jodee37

@lucky7wife - our situations are quite similar. did you and DH get your karyotype run? i'm keeping everything crossed for you in your 2WW!! when will you test?

my plumbing is shot (for lack of a better metaphor) but with my history of miscarriages (6 wks and 8 wks) it seems like perhaps there is either a genetic issue with myself, DH or perhaps the combo of the two of us. Or maybe my eggs are crappy. OR i just have really shitty luck. the more i think about it (and if money grew on trees) i would want to do everything. all the testing (except gender). i suppose when you're shelling out $18000 what's $1500 more? i am relieved to hear your office gave you all the stuff up front too.