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New here and rambling...another try w OE/DE? (many losses, child ment)

June 25 2012 at 1:02 AM
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  (Login desperate4no2)

Hi, I just had my 2nd IVF and after the CGH results and my 5 m/c over the past 5 years, I am finally processing the fact that I may need to consider DE. I just had my transfer yesterday, but the CGH results were so bad--NO normals, all 10 eggs had issues, most "complex abnormal" and they transferred the one monosomy 15, even though it's very, very unlikely to be normal. I believe the quote was "they are almost always abnormal".

I guess I was just in a completely naive-place all these years of trying (and looking back,why didn't I move on to IVF sooner??!). I always have high amount of follicles (PCOS), FSH 18 mos ago was 7, I respond well to the meds, have reg periods and usually have good results from the retrieval as far as no of mature eggs and fert rate etc.. The CGH was very eye-opening and made me realize that that plus my 5 m/c are not normal, ratio-wise, even for AMA.

The 'slap in the face' I got yesterday either took the hope out of my sails or slapped some sense into me, I'm not sure which. DH is deflated, but has some hope that we can still do it, he feels it is a numbers game-- the emotional cost of trying OE again may be tough to muster for me and also the cost! We have been out of pocket for these 2.5 years of fertility bills and I just think that cutting to the higher-result possibility may be the way to go. I am feeling desperate, I guess! I am not sure what I'm looking for, maybe hope or support or just being around other women with similar struggles may be helpful to me. All of my friends who battled IF, have had their babies already and I'm running out of support systems (although, 3 of them had 'oops' babies after they got their IVF babies!)

Thanks for listening, I am all over the place right now....

Me: 41 PCOS (treated with Met), heterozygous MTHFR and bad eggs apparently, immunology reports=normal
DH: 46, everything OK
4 yo DD

Dx'd pcos at age 35
I missed m/c at age 36
1 clomid CP at age 36
2nd round clomid at age 37= dd, now 4
TTC on our own at 38 for 6 mos
Started clomid again at 38.5 yrs, for several cycles, then added clomid + inject at 39
all in all, 10 clomid (2 with inject added) cycles = 9 bfn's and 1 more m/c
Consult with Dr Zouves at age 41, seems hopeful re: my AFC and response to stims, all immunology seems normal, but treating me for RPL with aspirin, lovenox and intralipids
IVF #1 at 41 w Antagon protocol (20 follies, 18 eggs, all mature, 14 fert. PGS= 4 normals/4 swings) all 4 normals tfer'd =CP
FET #1 4/2012 t-fer'ed 2 expanded blasts "swing" embryos = CP
IVF #2 6/2012 20 follicles, 13 eggs, 10 fertilized. After CGH- NO normals! One monosomy 15 embryo transferred, but low to no hope
I'm considering DE, Dh may want to push for another IVF with my eggs

 
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Anonymous
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I get it

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June 25 2012, 10:20 AM 

This whole process is draining. I am moving to my 5th IVF with OE, this time Im doing Mini at new hope. Im about to be 42 and also losing hope. We are all hear to support and just remember, you are not alonfe, and there is a plan...

 
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Anonymous
(Login desperate4no2)

thank you

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June 25 2012, 1:47 PM 

I really appreciate hearing from you. This journey is so isolating and scary. I wish you much luck!! I do a lot of genealogy and saw that my great, great grandmother had her last child at 45-another reminder that those 'golden eggs' are there..

 
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(Login Raindrops1)

Hi AJC. (children and DE ment)

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June 25 2012, 3:16 PM 

I usually post on the donor eggs boards but look on this board too. It is hard to decide when you have tried enough with your own eggs. If you can afford it and your DH really wants to try one more time then that is fine. But if you move on to DE and have a baby you will fall totally in love with that baby. happy.gif

I did two OE IVF cycles with my own eggs at age 43. I never got the high number of eggs that you got but we were hopeful and there was a chance. Then I moved on to a guaranteed DE cycle. I could not risk any more money and my odds of success with OE were extremely low at that point.

Once my DS was born I fell totally in love with him. The love I have for him is just as strong as the love I have for my naturally conceived DD. If you only have enough money for one more cycle then I think you should move on to DE if you are ready. I personally was not emotionally ready so it made for an emotionally difficult pregnancy. But now that my DS is here I absolutely think he is the cutest, sweetest little guy ever. I wish I would have had him earlier as I wasted a few years being so very sad.

 
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(Login desperate4no2)

thank you (children and DE)

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June 25 2012, 3:35 PM 

I love it! Thank you for sharing your story!

I am personally ready to just move on to DE, I have reached that desperate point of my previous fears/resistance being less powerful than my fear of never having another child. We could find the funds for another OE cycle and then DE, but we've spent so much already (literally shuddering at what we've spent) and I feel for me, it's getting to be financially too draining for us to keep going when the results over 2.5 years have been overwhelming evidence that I do not seem to have good quality eggs.

Did you do your DE cycle near you or did you have to travel? The thought of being local and sticking with my doctor is very tempting, but it seems so much less expensive to go to a frozen egg bank (but I literally know nothing about them, I only just opened my mind to this yesterday). I think that the guaranteed DE cycle at my clinic is 2x what an IVF cycle is. Does that sound right?

I am thrilled to hear that you found such sweet success. My close friend has a 2 mos old bundle of joy from a donor sperm/egg from a clinic in South Africa-wonderful!

I just need to decide to try and convince DH of this, or give it another go with OE and then move on to DE. The cost of doing both is staggering. I just keep telling myself that many people spend $$ on their kitchen remodels or new cars. I am instead choosing to embrace my tiny, unattractive kitchen and 10 year old car, I guess!

thank you again for your input!

 
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anne
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wonderful story

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June 25 2012, 5:17 PM 

thanks for sharing..

 
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(Login Raindrops1)

Well just keep looking at your options.

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June 25 2012, 11:05 PM 

Yes, my guaranteed DE cycle was about the cost of two cycles. It is expensive but less stressful as you will either get a baby or a refund. I also have a small kitchen and an 8 year old car. But a new kitchen or car wouldn't mean anything to me without my baby.

I don't know anything about frozen egg banks. I used a local clinic and didn't travel. If you post on the pink pregnant or parenting after DE board you will see that some of those women cycled in other countries too. I wish you luck in whatever you decide to do.

 
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DeeinNYC
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One thing stands out to me...(DE's mtd)

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June 25 2012, 5:00 PM 

Hi,

First, I just want to say that I am sorry that your last cycle went the way that it did. One thing strikes me as odd about your situation though. The IVF before this one you were able to get 4 normals yet none this cycle. Did your protocol change? The ability to make 4 normals is great. I just wonder if the reason for you getting no normnals this cycle is a change of protocol or something else at work. If I had just recently had 4 normals, I might give it another shot with my own eggs. I also would have said to look into immune issues since you had a CP with 4 pregnancies but I see you go to Zouves. Has he looked at DQ-ALpha and HLA matches? I know that ladies with PCOS often have too much testosterone in their system so perhaps a protocol with very little LH in it would be beneficial. Personally,I've moved onto DE so I understand where you may be at, but I am much older than you. I have to say, in your position, at your age, I would likely give it another shot with my OE's but I totally get that when you've had enough..you've had enough. Good luck whatever you decide.

 
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(Login desperate4no2)

Re: One thing stands out to me...(DE's mtd)

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June 25 2012, 6:14 PM 

Thank you for your response--all this "talking" is really helping me process!

I didn't clarify that my IVF #1 was only PGD testing so that was only the top 9 abnormalities, whereas the CGH report for IVF #2 showed that I had 9 out of 10 complex abnormal plus the one with just one missing chromosome (the best of a bad lot-haha). We did antagon protocol again this time -bravelle + menopur +ganirelix, dex, aspirin, lovenox (is that it??) plus he added doxycycline for 10 days and probiotics, which we didn't do last time. I read on some msg board that Dr. Sher wrote that he didn't like Bravelle/Menopur so now that has got my head spinning if I do OE again, will switching to gonal f etc..make a difference..?

Yes, we have had all the immunology testing done. I thought I would have had something along those lines, but all the crazy amounts of testing came out within normal range--The DQ alpha match came out okay, too. I do have hashimoto's which my acupuncturist thinks could be more of a problem, but Dr Zouves is saying it's egg quality, and is treating me with intralipids/doxy/dex etc as though I do have other issues so my bases are covered, so to speak.

I just can't fathom how I have produced so many eggs over the years/treatments and none of them are normal?? He said it is like a high sperm count man with low?no? morphology. That makes sense. He was pretty grave about future prognosis for my eggs, but the fact that he didn't shut the door in my face as far as another try, makes me consider it (plus DH would like to use OE), but if I can resolve the cost in my head (of OE plus having DE as a contingency plan) then I may give it another go. My heart is saying cut to the chase, but there is a little, tiny inkling in me that is wondering...

I wonder if my protocol would change if we did it again--little LH you mentioned etc..I need to learn more about DE as well. I have scheduled that consult with them already for next week.

Thanks for responding..I so appreciate the input.

 
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(Login miraclex2)

You must be from the Bay Area

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June 25 2012, 6:11 PM 

since you are going to Zouves happy.gif I consulted with him and did all the checkups but never moved ahead because I don't want to blast my ovaries with conventional IVF protocols any more, I am a poor responder/DOR.

I am a year older than you and I have a far worse fertility profile - FSH now higher than 10, and never got more than 6 eggs even after 5 rounds of conventional IVF although I did find success on first try out of sheer luck.

I am currently committing 18 rounds of mini-IVF at a SoCal clinic and I am flying out every month for this (currently in my 5th round). If it doesn't work, I am going to be happy with just DD and forgo DE. It is my best effort and if it doesn't work, so be it.

I think with your FSH, AFC and probably pretty decent AMH, you ought to have a pretty good shot at OE, I would love to have your numbers if I could happy.gif




 
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(Login desperate4no2)

Re: You must be from the Bay Area

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June 25 2012, 6:23 PM 

Hi there,

Yes, bay area here! I didn't know about the mini-IVF, this is interesting to me. I think that it's great that you found a 'plan'! It feels like such a battle coming up with a plan, at least you are in it and "doing it" and yes, it certainly sounds like a best effort! Does this mean you bank each embryo collected and put them all in at a later date, or is that something else?

This is such a warm reminder for me that there are all kinds of creative ways of trying for that end result--I hope to learn more from you all here.

best of luck!!


 
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(Login miraclex2)

I am doing back to back cycles

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June 25 2012, 6:43 PM 

and just banking blasts. Grant it, blasts are not necessarily normal, but it is the least disrupting weeding process I can think of, and each cycle is very cheap, so it doesn't break the bank, as opposed to the $20K cycle I would have done at Zouves or $30K cycle at CCRM.

I am using a surrogate at the same time because I lost my uterus somewhere along the journey happy.gif So I will be banking while she transfers. If I still had my uterus, I would have banked and then transfer at the end of this all.

I personally think that my egg quality has improved drastically since I ditched conventional and went mini. It doesn't mean that I can produce normal embryos since I have not tested them yet, but I am able to bring all my mature embryos to past morula stage, as opposed to before, almost 90% of my embryos couldn't be fertilized or just died before day 3.

I choose to believe that I still have one or two golden eggs within me, I just need to find a way to get to it.

 
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(Login desperate4no2)

Re: I am doing back to back cycles

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June 25 2012, 8:20 PM 

Oooh! That's fascinating! Way to think outside the box-I need to open my mind to all kinds of possibilities like this. I just think "I love my doctor/clinic (and they are convenient), do what they say", but really, it's best to investigate all kinds of options. I think that's amazing that your embryos have become more mature this way! Really, really amazing and exciting! I know you are not "there" yet, but I'm thrilled for your progress so far...thanks for sharing!

 
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(Login miraclex2)

Another thing I can think of is, PGD hurt your embryos

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June 25 2012, 7:00 PM 

You have 4 embryos PGD normal, and as far as I know, PGD has been proven to hurt embryos, since they are done on day 3 embryos. I am pretty sure that if you had 4 CCS or PGS normal embryos, you would have had at least one live birth (the number suggests so). You are not the first person that I read about with PGD normal embryos ending in CP, I have read way too many similar stories from older women.

I am thinking that you shouldn't do PGD at Zouves, it is not the best place for doing genetic testing. I myself debated a lot whether I should do day 3 PGS at my clinic since they just started offering it a few months ago, and I decided against being the guinea pig.

My strategy is, grow blast, and only transfer the highest grade blasts first, because there are researches showing that normal ratio is positively correlated with blast grading (not correlated with day 3 embryo grading). The normal ratio could be as high as 50% for our age group for the 5AA and 6AA, and it is a worthwhile bet.

Another thinking is, I know Zouves is VERY aggressive in his dosage. He gave me the most aggressive dosage among all my consults. High stim is known to cause more aneuploidy.

Just some food for thought.

 
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(Login desperate4no2)

Re: Another thing I can think of is, PGD hurt your embryos

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June 25 2012, 8:33 PM 

Very interesting..I have no way to compare since this is all I've done. I did 150 bravelle am/pm and menopur 75 per day for 6.5 days-is that aggressive? I have no clue...I was so disappointed after this recent transfer to find that my 18 follicles only came up with 13 eggs (whereas 6 mos earlier, all 18 were there and all mature). I just don't know if that cycle or this one was a fluke (or all cycles are random??) so it's so hard for me to know what end is up...

This is very interesting because my PGS 'swing embryos' from the FET cycle were the best looking--they were both expanded blasts and I also had a CP. The normals from the fresh cycle were sluggish- 2 EB and 2 morulas.

I have thought about just transferring a bunch of the best looking ones, something to think about...

 
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(Login miraclex2)

6.5 days of stim? You are doomed for failure!

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June 25 2012, 8:44 PM 

the stim days are way too short!! That was how I got crappy eggs for the last 4 times on conventional protocols. No, your protocol is not aggressive, but you should have cancelled with that few days of stim, there are no recorded live birth for our age group with 6 days or below.

That was a fluke!

 
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(Login miraclex2)

For 40+ age group, longer stim = good news

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June 25 2012, 8:47 PM 

short stim = terrible news, should cancel if under 8 days.

I learned the hard way after FOUR tries. I paid dearly with my ovaries and $$$ for this little tip. One of the reasons I am churning out much better eggs is because my stim time right now is between 12-14 days on average.

 
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Anonymous
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Re: For 40+ age group, longer stim = good news

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June 27 2012, 4:30 AM 

I didn't know this. Does that mean less mature eggs or that the mature eggs themselves are in bad shape if they came about through a shorter cycle?

 
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MIR
(Login miraclex2)

yes, even mature eggs have different quality

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June 27 2012, 12:35 PM 


 
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(Login desperate4no2)

Re: 6.5 days of stim? You are doomed for failure!

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June 25 2012, 10:08 PM 

Sorry, I can't do simple math, apparently... I had to recount and I started stims Sat am and finished Sat am so I guess that is 8 days? I got confused when I started taking ganirelix, forgetting that I was on stims at the same time. I wonder if less days is due to the PCOS, people don't want to push it for fear of OHSS? Hmm...this is all interesting to think about. If we do OE, I would like to consider mixing something up next time!

happy.gif

 
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MIR
(Login miraclex2)

Do you have $40K lying under your mattress?

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June 26 2012, 1:21 AM 

I know that CCRM has a pretty questionable reputation here, because most of us are DOR/high FSH/low AMH etc that are not welcome by the clinic, and frankly given our situation, it is just not the best price performance place to go.

However, since I saw a couple of 41yo successes there lately (all failures at other clinics before), I think you may be an excellent candidate for their treatment, and you may even qualify for their $40K/3-cycle money back guarantee program which is available to anybody up to 41 (the cycling date).

The successes I saw over there are all women with your profile, low FSH, high AFC/AMH, and honestly if you can go through 3 rounds retrieving ~60 eggs, it is almost impossible to not find ONE normal at your age. Dr. S used to ultra high stim or high stim, but his latest protocols are quite mellow and I think he realized that high stim is more hazardous for our age group. CCS is the least disruptive way of genetic screening. They take one cell from your blast, and freeze it. Your blast only goes through freeze/thaw once.

If you can come up with $40K and qualify for that program, I think you are pretty golden there, but you need to hurry before you hit 42.

 
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Anonymous
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Re: Do you have $40K lying under your mattress?

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June 26 2012, 2:22 PM 

I had no idea about that program, I am glad to hear about it. I mean, I've heard of the place, but not the deal that you mentioned. I know, 40K, ouch, but I am kind of trying to prepare for that number, anyway since it seems like the donor egg route isn't far off from there...Unless you use a frozen egg bank..

So it sounds like they test on day 5, not day 3? I was thinking that that seems to sound more ideal than day 3 testing and I haven't investigated CCS at all. This is really enlightening, thank you. I agree, it's hard to imagine even 40-50 eggs not having one good one in there! This is when my head really starts spinning.. wink.gif

 
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MIR
(Login miraclex2)

since it is a refund package, I think you should just hurry

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June 26 2012, 4:37 PM 

If I qualify (not by a thousand miles hehe), I would have jumped at this package and cycle three times. If I don't walk away with a baby, I get most of my money back. You can't lose with this if you qualify.

 
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B.
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Re: New here and rambling...another try w OE/DE? (many losses, child ment)

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June 26 2012, 5:23 AM 

Hi, I haven't been here much but was the CGH testing done on your eggs or embryos? A few years ago I was told by an RE who I trust that CGH can damage the eggs. Also I was told by another RE, only after I kept pressing for explanations, that there is a margin of error in CGH testing of eggs. Which means a good one can get thrown out.

As I said it was awhile ago that I was told this but it makes sense to me, and I would not choose to do CGH or necessarily trust the results. But I obviously could be wrong.

 
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Anonymous
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Re: New here and rambling...another try w OE/DE? (many losses, child ment)

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June 26 2012, 1:59 PM 

The thought certainly has crossed my mind if the testing has messed things up, for sure. It was the embryos that were tested, I probably wrote eggs. The multiple trisomies in most of them, for some reason, he said were linked to egg quality, not sperm quality (the science stuff goes right over my head, unfortunately). I admit, that part of me is holding out for a sliver of hope (I mean, sliver!) for this one monosomy embryo in here, that maybe it is actually fine--but with my odds, it's not likely, or I'm at least not able to get 'excited' about it, anyway.

The thing that slightly sways me away from the testing being the problem is that I've had 12? clomid (most with IUI) cycles (2 with added injectables) before this where I had 2-4 big follies almost every time and the results were 2 chemicals and the rest BFN's. Oh and this was with DH's 50-80 million sperm after the wash...it was unfathomable to me how 50-80 million sperm could be wrong..haha And I also had the missed miscarriage at 36 years old before I got into all the ART. It just seems like it probably is my eggs, no? (since all my immunology seems fine, except for hashimotos, but am being treated with all the extra drugs/intralipid to help balance that).

The thought of another round of putting in the best 4-6 embryos without testing them is a consideration -it's certainly cheaper! I just have to figure out how I feel about the issue of whether my baby could have some issues. That is something I need to work on how I feel about, I guess. You could get that with donor eggs, too, I realize. It's a lot to consider, but I do appreciate all the food for thought. My circle of friends are not 'read up' on my options so these discussions are very helpful.. happy.gif

 
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di_nyc
(Login di_nyc)

More food for thought

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June 26 2012, 3:33 PM 

I know this is a very controversial subject, but you can always have CVS or amnio and if your baby does have some issues, there is the option to terminate. A lot of people are not comfortable with doing so for personal reasons, but if you decide not to have the embryos tested and just put back 4-6 and hope a normal one sticks, you do still have the choice to not carry an abnormal embryo to term. So you're not stuck with the baby having some issues. (That is, assuming you mean the kind of issue that can be tested for at all... any baby can end up having some issues that couldn't have been detected by the currently available genetic testing anyway, even with younger parents and completely natural conception and textbook pregnancies! But if that happens, there was nothing you could have done to prevent it, and hopefully as parents we all can and will cope with any issues our kids have by loving them and helping them live the best lives possible no matter what.)

 
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(Login desperate4no2)

Re: More food for thought

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June 26 2012, 5:47 PM 

Very true, very true. I am considering these kinds of things now. I think once I've (now) reached the DE possibility, then I think that if I did do a last hurrah OE cycle, I may do something really different like this...(different from what I've done etc)...It's all so compelling...thanks for sharing, I need the food for thoughts wink.gif

 
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Jamie
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welcome, ajc

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June 26 2012, 6:35 PM 

You know, I think something immune must be going on that you had four normals and four CPs. I am so sorry for all that you have been through. I had one CP and it was very physically and emotionally difficult.

Personally, I would keep cycling and looking for normals. At the same time, leave no stone unturned with immune stuff. Check out this blog: http://lifeandloveinthepetridish.blogspot.com/ This woman had seven miscarriages (some were normal embryos) and is finally pregnant and past 20 weeks. Her story is amazing.

Wishing you the best!

 
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Anonymous
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Thanks!!! (m/c ment)

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June 26 2012, 9:57 PM 

Can't wait to check it out!! I love hopeful stories!!

I know, it's weird. When I had a CP after the four normals transferred, I was like "what the..??". I was also on dexametheasone, 2 intralipids, lovenox etc..I m/c'd before the testing could be done on it to determine if it was me or the pg (but I really wish I knew that info!!). Was it because maybe they weren't strong enough (2 morulas/2 EB after 5 days) or was it that they ALL had mutations beyond the 9 normal abnormalities tested with PGS..?

I have gotten all normal range on the vast amounts of immunology tests my doctor had ordered (oddly, I think my insurance covered the really expensive ones and my insurance is not very good), but the other thing I wonder is, since I was tested for NKC when I was not pg, do they flare (or my hashimotos) when I am pg?? My TSH had gone from 1.9 from cycle start to over 4 when I was tested after my first positive beta, which was around a week later. That didn't sound good to me. It is all such a mystery...

I'm going to go check out the blog-thanks again!! happy.gif

 
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