WWSAIF do?

IBackBevo

Abbreviated backstory (for those of you who don't know):

I was diagnosed with DOR in 2011.  At the time, my highest FSH was 13 (with elevated E), my AMH was 0.5 and my AFC was 8-9.  I was also diagnosed as having a genetic issue called a Fragile X Pre-mutation - which causes premature ovarian failure (menopause before 40) in about 20-25% of women.  (There are other issues with this genetic disorder, too, but they are beyond the scope of an IF discussion).  We were really given doom and gloom even though I was only 31 at the time. The RE was shocked (told me to go play the lottery) when we conceived on our first round of Clomid/IUI.

I had a rough pregnancy and ultimately developed severe pre-e which led to DS having IUGR (intra-uterine growth restriction).  By the grace of God, after bedrest, a high calorie diet, a lot of monitoring and being in-and-out of the hospital, we were able to make it to 37 weeks.  DS was born via a C-section and was 5 lbs and only had to stay 1 night in the NICU.  We had some issues early on, but ultimately he has flourished and is now above the 50% for weight and height.

I've continued to follow my DOR and it seems to be getting worse.  Earlier this year, my AMH was undetectable and my AFC was 4-5.  Also, my cycles seem to be getting more erradict and I have been having some bothersome symptoms which is an indication that I am probably in a peri-menopausal type state...or, at least, moving that way.  My O has moved up from about day 20 to day 13.  My FSH this cycle was 11.2.  However, between my 13 and 11 readings, I have had 2 come back normal. 

I saw an RE in April to discuss freezing embryos. He did not feel like that was a viable option due to low AFC.  I went to another clinic recently which is known for having one of the best labs in town.  This RE was very encouraging and felt that due to my age (33) and past proven fertility that I would probably only need to freeze 2-3 embryos to ensure a very good shot at a future child.  His clinics pushes the embryos to day 5 and he said that if they make it that long then they have about a 60% pregnancy rate in women my age with an SET.  He did not recommend anything more than an SET because of my age and the fact that my singleton pregnancy was already high risk.  He, however, did seem to think that I would have lower odds at developing pre-e the second time since it was a second pregnancy with the same man.  He seemed hopeful that we would be able to get the number of embryos I would want within one cycle.  Of course, there are never any guarantees, but he was encouraged that I would respond to injectable meds well by the fact that I responded to just Clomid well enough to get pregnant. He told me that he would rather work with a 33 year old with proven recent fertility with an undetectable AMH than a 37 year old who has never been pregnant before with an AMH of 1.5.  When I inquired about how long I could wait, he basically said that he did not think the sky was following, but also said that it would appear that my numbers are declining.  On the other side, the RE pointed out that if we do this and it fails - that gives us more information on which to make decisions with, too. In other words, if this doesn't work, this may mean we need to move our timeline up for baby #2. 

So here is my conundrum and what I want to get some perspective on: Should I go ahead and do this or should I wait and TTC on my own again when we are ready and run the risk of losing the chance at number 2?  WWSAIF do? 

After running the numbers, I think that doing this will probably cost about $13k-$15k with meds. Obviously, there is always the chance I could put out this money and not get any embryos to freeze.  I think DH is pretty set on us not having another child right now.  In fact, I generally have a hard time getting him to BD with me around O without taking any preventative measures.  I think I could probably talk him into start actually trying here in another year, but still I know there is alot of things he would like to do before having another child.  Also, I agree that it is not the best idea for my career.  My C-section is still not healed.  And I generally like the idea of giving DS these first few years on his own.  So, ideally, if I had normal fertility, I think we would both like to wait about 2-3 years to have another child.  If we are able to get some embryos, it sounds like we could probably do that. Alternatively, if we don't, we know that maybe we don't have that time and we need to move forward...so doing this would give us a lot of information. However, it is expensive and there is a risk with my DOR that no embryos could make it to day 5...or we could have only 1 make it to day 5 which would also make me nervous.     

I know this is ultimately a very personal decision, but I wanted to get other thoughts and opinions. Sorry this is long.

 

   

 

 

 

 

 

 

queenbone

This is the stuff that sucks about being a woman, especially one who has struggled with IF. Like you I prefer a 3 yr spacing, but I have always started ttc on our own much earlier than that just so I had a record of my cycles and wouldn't be wasting time when we were ready to get serious.
If I were you, with your diagnosis I would do a retrieval and see how many embryos you can get and freeze now. I would be less worried about your lower AFC now because I would personally be concerned with what to do with a lot of frozen embryos, I would want to give them all a shot, so the fewer the better, but that is my hang up.

Then once you know how many make it to day 5 you have a better idea of how long you want to wait before a SET and how many chances to transfer you have in case the first isn't successful.

GL with whatever decision you all make.

imoverit

Ugh IF sucks. I personally would do the retrieval. That way you will have more answers and hopefully opportunites in the future. Hugs

TJ1979

Oh Bevo, that is a tough situation.  I'm sorry you have to make a decision like that.  My first instinct upon reading that was to wait and TTC on your own, or see if you can make it work with IUI and meds again.  But with the DOR and the fact that it seems to be getting worse, time is not on your side, and you don't want to look back and regret missing this.  I think the saying is that I would rather regret the things I have done, than the things I have not done.  So maybe in that situation, I would go for it.  I don't know, big hugs to you and YH, and GL with your decision.

IBackBevo

Thanks for the input.  And, yes, I agree that it sucks. :P  If I was a normal "barely 33 year old," waiting 2 years would be NBD. Heck, my brother and his wife are pregnant and he is 44 and she is 38.  35 is certainly not old to be having a second child in this day. But, alas, that is not the circumstances I find myself in...     

I think DH and I both lean toward doing it.  It is a lot of money, but in the big scheme of life I suppose it isn't that much when you compare it to the value of a child.  The only thing that gives me pause is that I don't think it would be worth doing it if we were to decide to go ahead and TTC within the next 9 months to a year.  We won't be able to cycle for another 2-3 months anyway due to me needing to get on supplements and an already planned vacation.  And I don't think 5-6 months will matter one way or another.  But I do feel like that if we want to wait a year or more, it might be best to do this...

Then, at other times, I think that maybe we should just wait another 6 or so months and start trying on our own.  I could lose the last 30 or so pounds I need to lose by then.  In another  7 months, I will be 18 months out from my C-section which technically would put me even eligible for a VBAC.  And it would still put 2+ years between my kids. 

I just go back and forth on the best thing to do. And then I also think about what incredible regret I will have if we keep doing nothing because we can't make up our minds... 

Now I'm just rambling more. Thanks for listening anyway.

IBackBevo

queenbone said:
If I were you, with your diagnosis I would do a retrieval and see how many embryos you can get and freeze now. I would be less worried about your lower AFC now because I would personally be concerned with what to do with a lot of frozen embryos, I would want to give them all a shot, so the fewer the better, but that is my hang up.
 

Well, that is an entirely other issue/concern I have, too. 

What if I do respond really well to meds and end up with a whole bunch of embryos?  Certainly, no one thought I would get pregnant off of just Clomid and an IUI...but it happened.  My AFC that cycle was higher after only 2 days on Clomid than it was at my baseline.  I sometimes wonder, "What if all of my hormonal and fertility problems are caused not by a true diminished ovarian reserve, but because the brain isn't sending the right messages to my ovaries?  What if my problem is not true follicular depletion but instead a failure to properly recruit or develop ovaries in their very early stages?"  This isn't a totally novel idea because many of the other things that the FMR1 mutation (or premutation in my case) causes are things like ADHD, anxiety, and, in the more serious cases, Autistic-like behaviors and even tremor/ataxia. 

I even found a study in infertile mice who have a similar mutation that said that it appeared the problem was in a certain cellular signaling pathway (akt/mTOR) and that therapies should be targeted at this. I don't know if any of the current fertility drugs do that...I don't even know if science has gotten that far.  Further, because it is also a signaling pathway that is thought to play a role in the development of certain cancers (interestingly people with Fragile X Syndrome have a low rate of cancer), who knows if they will ever target drugs at stimulating a pathway that (when it is overstimulated or incorrectly stimulated) is thought to play a role in the development of cancer?

If I did have extra embryos, I don't know what I would do. Disposing of them is not even an option for me.  Theoretically, I say that I would put them up for adoption.  I would love to give someone that gift!  But then the thought of having a me and DH's bio child out there walking around (a full brother or sister to my DS) and never be able to know them--I don't know if when it came down it that I could do that. Of course, I guess I would know ahead of time if I had a bunch of follicles and could make the decision then. Probably not something I will have to worry about anyway with my low AFC.       

Ruthie04

I'll admit, I am completely biased against any RE who encourages a couple to do a freeze only cycle. But, that's only because of my own experience. Between my two full cycles, I had 25 embryos and none to freeze. About a dozen or so made it to blast (I think they say about 1/3 make it that far?), but the quality just wasn't there. My clinic only freezes embryos from 1/4 cycles, since they only freeze the highest quality blasts. So, I would have been SOL, even with such a high number of retrieved eggs (total 31). I was 29 with one prior pregnancy from a TI cycle. On paper, I looked great, but my embryos just sucked. I also need high doses of stims, so who knows what that did to my eggs.

I also had a high risk pregnancy with placenta previa, IUGR, irritable uterus, and a c/s. I just don't think my body is ready for another pregnancy, so I totally get you on that. But, I wouldn't want to take the risk of putting my body (and bank account) through the potential for frosties. I wouldn't do a fresh cycle until I was ready to commit to a transfer in the event my embryos started to look bad on day three or once they reached blast stage. And, there's no guarantee they'll survive the thaw. But, I am NOT a risk taker (as evidenced by the whopping $3 I spent in Vegas!), so take my advice with a grain of salt.

My RE said I don't have much time left, so we are also in the "now or never" boat. It just really, really sucks to have to make these decisions! So very sorry to see you in this predicament.

PennyLane26

It sounds like you have done a good amount of research and weighed your options. If it were me, I would go ahead with the retrieval. 

I have a surplus of embies (7 frozen) and I have the same concerns. Disposal is not an option, but I am hesitant about research donation and adoption. I want to give each embryo a fighting chance to be a part of our family. It's my MO to constantly play out the good, the bad and the ugly in my head. I am also worried that, because I had a high risk pregnancy with LO (GD, hypertension, pre-e) my body will not be able to handle 4+ pregnancies. DH is always calm, cool and collected. He just says we can only take it one day at a time. For now, we have our first FET loosely planned for late winter 2014.

GL with your decision, keep us updated!

IBackBevo

Ruthie04 said:

I'll admit, I am completely biased against any RE who encourages a couple to do a freeze only cycle. But, that's only because of my own experience. Between my two full cycles, I had 25 embryos and none to freeze. About a dozen or so made it to blast (I think they say about 1/3 make it that far?), but the quality just wasn't there. My clinic only freezes embryos from 1/4 cycles, since they only freeze the highest quality blasts. So, I would have been SOL, even with such a high number of retrieved eggs (total 31). I was 29 with one prior pregnancy from a TI cycle. On paper, I looked great, but my embryos just sucked. I also need high doses of stims, so who knows what that did to my eggs. I also had a high risk pregnancy with placenta previa, IUGR, irritable uterus, and a c/s. I just don't think my body is ready for another pregnancy, so I totally get you on that. But, I wouldn't want to take the risk of putting my body (and bank account) through the potential for frosties. I wouldn't do a fresh cycle until I was ready to commit to a transfer in the event my embryos started to look bad on day three or once they reached blast stage. And, there's no guarantee they'll survive the thaw. But, I am NOT a risk taker (as evidenced by the whopping $3 I spent in Vegas!), so take my advice with a grain of salt. My RE said I don't have much time left, so we are also in the "now or never" boat. It just really, really sucks to have to make these decisions! So very sorry to see you in this predicament.

It sounds like we have a lot in common related to our pregnancies.  On top of the pre-e, IUGR and c/s, I also had irritable uterus. Ultimately, it didn't cause me any actual problems other than just stressing me out.

The only reason I think the RE encouraged the freeze all cycle is just because that is what we consulted him about...

Mrs.AmyDylan

Without reading everyone else's responses, my advice would be to cycle and freeze. With DOR, you are unlikely going to have a better chance in the future. You don't want to be four years from now chasing this with even fewer eggs. If you are able to get some frozen embryos, you can relax and wait until you are both ready. Im assuming that while $13-15k is a ton of money, that is something that you are able to swing based on wanting to expand your family and would ultimately do if TTC on your own didn't work. Good luck with your decision!