Getting ready for 1st IVF cycle: What do you wish you'd known beforehand?

[mommadotta]

So my last IUI cycle wasn't successful, and I'm now moving forward with IVF... sigh. I'm trying to educate myself as much as possible before I start because I feel that my IUI treatment wasn't very well coordinated, and I want to be a better-informed, more active participant in my treatment this time around-- to save costs, agony, and sperm (we have a very limited quantity of sperm available, since we would like DS to have a full biological sibling).

I know there are resources online that describe the general IVF procedures, which I'm planning to read closely. (If you have favorite sites to recommend, please share!) But I also want to know more about any important "other stuff" that might not get included in these writeups, for whatever reason.

For those of you who have done IVF, what do you wish you'd known before you started?

Thanks all for your support!

[kkearney1982]

Momma,
I saw your post in the Queer board and figured I'd respond here (maybe to "bump" it up!). I have done 2 IVFs (both BFNs). I think the biggest thing I wished I had known at the beginning was that I needed to take charge of my own treatment! My RE did not give me the full story on my fertility situation until halfway through IVF #1 and instead of changing my protocol, he just increased my medications to the point that the one little egg I did make was, essentially, scrambled.

If you have any specific questions, feel free to send me a message--unfortunately, I've done A LOT of research, but most of it is specific to the meds/protocols required for my diagnosis (Diminished Ovarian Reserve/Premature Ovarian Insufficiency...aka High FSH).

Also, with IVF, they don't need to use a whole vial of sperm per cycle, which is nice--they just scrape about 1/4 of the vial and thaw that to find the "few good men"!

[mommadotta]

Originally Posted by kkearney1982

I think the biggest thing I wished I had known at the beginning was that I needed to take charge of my own treatment! My RE did not give me the full story on my fertility situation until halfway through IVF #1

Thanks so much for your response! Yeah, I've discovered that that whole "take charge of my own treatment" is absolutely crucial with all medical care. More often than not I've been frustrated after the fact that they didn't bother to tell me important information, or worse, to make use of information that they had and could easily have integrated.

BTW, what's "RE"?

Originally Posted by kkearney1982

Also, with IVF, they don't need to use a whole vial of sperm per cycle, which is nice--they just scrape about 1/4 of the vial and thaw that to find the "few good men"!

Hmm, my doctor said that they need 2-3 vials per cycle. Later, I tried to ask a nurse what the total motile count is that they actually need, since we're using vials with a somewhat lower count than average. The nurse didn't know, so I'll have to ask my doctor.

[kkearney1982]

"RE" is reproductive endocrinologist. Sorry, another thing you learn really fast is all the acronyms!

2-3 vials? My god, what are they doing? 2-3 vials for IUI, sure...but they're mixing eggs and sperm in a tiny petri dish (I had ICSI, where they pick the best sperm and inject it into the egg, so maybe that's the difference)--I know they're guys, but I think they can find the eggs without asking for directions!

I would ask again...and ask why.

[mommadotta]

Originally Posted by kkearney1982

"RE" is reproductive endocrinologist. Sorry, another thing you learn really fast is all the acronyms!

Ah, thanks!

Originally Posted by kkearney1982

2-3 vials? My god, what are they doing? 2-3 vials for IUI, sure...but they're mixing eggs and sperm in a tiny petri dish (I had ICSI, where they pick the best sperm and inject it into the egg, so maybe that's the difference)--I know they're guys, but I think they can find the eggs without asking for directions!

I would ask again...and ask why.

I will definitely ask! I'm not expecting the number to go down, but rather I'm afraid it may go up (and thereby decrease the number of cycles I can attempt) since the sperm count on our vials is low. I can definitely imagine that ICSI would use a much smaller quantity since they're hand-selecting the sperm rather than just throwing it in the dish (so to speak).

[Nanette56]

Just bumping the thread! I'm going to be doing my first IVF cycle in July after my last cycle with four good follies and perfect sperm counts resulted in a big fat BFN Hope you get lots of good info mama!

[rlandnl]

I did 3 IVF cycles and 1 frozen embryo cycle.

My son was a product of fresh cycle #3. We did the Frozen ccyle when he was about 3.

One of the things I wish I had known, was egg quality, embryo quality, sperm quality, while all of it matters, what matters more is they have no clue why one embryo implants and another doesn't.

cycle 1 we had 2 perfect embryos, great egg quality, so so sperm- no baby.
cycle 2 we had 3 perfect embryos, great eggs, so so sperm and did ICSI and Assisted hatching- no baby but froze 2 blasts and 2 embies
cycle #3 we had 3 so so embryos, crappy eggs with (their words) "clumpy cytoplasm", crappy sperm in terms of quality and quantity did ICSI and assisted hatching- and we got DS

Frozen Cycle #1 - 4 perfect blasts, we grew the 2 embryos to blastocyst stage so that gave us 4 perfect little guys, and nothing No sibling for DS.

So my point in all that, don't let embryo grade, egg quality grades etc discourage you. My doctor told us out and out they really have no idea which embryos will implant, they try to pick the best looking ones. I hope that doesn't discourage you, in all the time I have had thinking about my cycles it actually encouraged me, it kind of reminded me that even in the face of IVF and infertility etc, we are still like all the other women, it's all in the odds of implantation.

[pharmgirl13]

After 3 years of TTC baby #2 (baby #1 was no problem to conceive) and 3 rounds of failed IUI, we decided to attempt IVF. I was very stressed during IUI and that may have been part of the reason why it failed. With the IVF I made sure I knew exactly what the protocol was, how everything was going to work, had all my meds... to avoid undue stress. I also relied on acupuncture which I think had the biggest effect on us being successful. I HIGHLY recommend finding an acupuncturist that is familiar with IVF and using them! I went once a week and then around the time of retrieval and transfer went at specific times. Also, try to not get discouraged. We ended up with 14 good eggs and husband's count was good. The next day, only had 4 eggs that had fertilized "normally". Ended up with a day 3 transfer of 2 embryos (only one of which took) and the 2 remaining embryos never made it to be frozen. As they say, "it only takes 1 egg and 1 sperm". I am due to baby #2 at the end of August.

Good luck!!

Kristin

[~Adorkable~]

You may also find more info asking this same question in the infertility sec ion, there are a few wise ladies that tend to stay on that side more.

Even my totally mainstream RE wholeheartedly agrees that acupuncture has shown huge benefits during ivf. The clinic I went to for my iui but that usually focused on ivf has 2 on staff and works hard to get everyone to give them a chance.

[happysmileylady]

What do I wish I had known before my IVF? That the number of follicles you get does NOT equal the number of eggs they can retrieve, and that the number of eggs doesn't indicate how many will fertilize.

I went into ER (egg retrieval) with 8 follies, came out with only 6 eggs retrieved. And of those six, only 3 fertilized. Our original plan had been to transfer only 2 and freeze the rest, but the 3rd embie ended up being crappy and it was recommended to transfer it as well, since it likely wouldn't survive a freeze and thaw. I was SO SO SO SO upset that we had so few retrieved and ended up with none left to freeze. It was honestly the most upsetting part to me. Even though my IVF worked on the first try, we were told that IVF was basically our only option, and we knew we wanted at least one more after that. Not having any frozen meant that we had to come up with enough money to go fresh all over again to have any additional children too.

Oh, also, one other thing, I wish I had known was that I wouldn't remember retrieval. They didn't like totally knock me out, but did give me a mild sedetive and while DH insists I was awake, I genuinely don't remember a thing. I remember walking into the room, and I remember "waking up" in the "resting" room but nothing in between.

[mommadotta]

Thank you all for your helpful stories! I've also posted links to this thread on a couple other boards (including the Infertility board), so maybe some folks there may wander over here to respond.

It's really helpful for me to hear more about other women's experiences, to give me a fuller picture of what the procedures are like and what to expect. I know the doctor's office will explain a lot of this, but hearing individual stories reinforces the key points.

I've now read several recommendations to look into acupuncture, so I did a little hunting. I happened to find a few medical studies documenting a significant effect of acupuncture, with at least one comparing it to placebo acupuncture, so I thought I'd share it for those interested:

http://www.fertstert.org/article/S00...213-5/abstract

That one focuses on ICSI, but I wouldn't expect acupuncture to have different effects for ICSI than for conventional IVF, since at that point what matters is implantation.

Although my insurance doesn't cover acupuncture treatment, I found a local clinic that appears to offer very reasonable prices due to their "community-treatment" (multiple-patients-at-once) model. I'm going to give them a call to find out more about their expertise with fertility and see what I can arrange.

[poppan]

I nearly went forward with an IVF at one clinic when I found out that their success rates were really low compared to other clinics in my area. I'm so glad I found out before I did the IVF. It costs pretty much the same amount of money in one clinic vs another, and I learned that all IVF clinics are not equal, that all REs are not equal. I learned that IVF is part art, part science. You want an RE who has a good feel for what kind of drug protocol to put you on (it's not one size fits all) -- that has a direct influence on how many eggs and what quality they are at retrieval, which has a direct impact on how many viable embryos you end up with, which really impacts your eventual success. You also want a really good lab that can nudge your embryos along.

Statistics aren't the whole story -- some clinics get more of the harder cases (usually the more well-known REs) and some clinics cherry pick their clients. But it's a starting point. You can look up your clinic and surrounding clinics here:
http://www.sart.org/find_frm.html#

[mommadotta]

Thank you so much for the link! That is really helpful information. I had no idea those statistics were all compiled and so readily available. Aside from confirming that my clinic has good outcomes compared to other local options, it's very helpful to have concrete percentages so I can calculate the likelihood of needing to undergo multiple cycles. I wish they had specific numbers for the some of the different treatments-- I just found out I will have to have ICSI, and I'm wondering what those success rates are.

[dbsam]

Although no longer TTC, I saw this on the main board. I was not informed at all at the beginning – so it sounds like you are starting off well. I only had one IUI because my RE felt it was a waste of time and money since it probably wouldn’t work in my situation. I was so un-informed; when I went in for the IUI, I told the nurse…I’m not sure if I am here for IUI or IVF.

I had eight cycles, six transfers, two retrievals, two cases of ovarian hyper-stimulation, several miscarriages, an ectopic pregnancy, and a reduction. I agree with pp’s who say take charge of your care. After my first retrieval I kept calling to say something wasn’t right but the nurse kept blowing it off saying the pain was because so many eggs were removed. Turns out I was hyper-stimulating and ended up in the hospital for six days!

For me, acupuncture helped significantly – I only became pregnant on the cycles that included acupuncture. I saw acupuncturists who were Chinese doctors and western doctors so my insurance covered a portion of the treatments.

My biggest piece of advice is to know your feeling about SR prior to transfer. On our last try we implanted four embryos – we limited to two embryos in all previous transfers. Since the quality wasn’t great the RE suggested transferring all four. Without going into to much detail and turning this thread into a discussion about SR…we ended up reducing and I am still living with and regretting that decision. Although I knew I never wanted to reduce, we were caught up in the moment, didn’t think more than one would ‘take’, so we transferred all four and then made a decision to reduce based in fear after so many losses.

My children were conceived the last cycle. We used ICSI and frozen embryos on all but one transfer. (I couldn’t use fresh since I had issues with hyper-stimulation.)

I wish you all the best.

[poppan]

If I recall correctly... success rates with ICSI are usually around the same or better than without, but I guess each clinic has slightly different stats. If the stats are slightly better for with ICSI than without, it's because in ICSI cases the diagnosis is usually male factor infertility and ICSI does a good job of overcoming that. If the egg quality is otherwise good, these cases might see a higher pregnancy rate than the non-ICSI cases where IVF does not overcome whatever the reason for the infertility is.

You can read more here (scroll down to the bottom): http://www.advancedfertility.com/icsi.htm
I love that website

[mommadotta]

Thanks very much for sharing your experiences and the added information. I really appreciate it. There's definitely a lot to research and think about, and this helps me prepare myself better. I'm still getting used to the idea of ICSI-- it seems strange to me that it doesn't carry a higher risk of birth defects. I just don't trust the concept of visually hand-selecting sperm instead of letting the strongest ones "win"!