Devastated- IVF #1 all abnormal

Knottie4978096 · March 2015

Well - I'm 39, just completed ER this past Saturday. 11 eggs retrieved, 6 fertilized naturally, all looked great. RE office very happy, my prognosis was good - all my tests came back normal, no health issues. Then, we get the PGS report - all 6 abnormal. And not just 1 chromosome - they were a complete mess. From what I've been reading, this is rare given my prognosis from testing. The RE office didn't say anything other than, let us know what you want to do. I'm assuming the option is donor eggs.

stillpraying4ababy · March 2015

What was ur diagnosis

Knottie4978096 · March 2015

My diagnosis is unexplained.

jnissa · March 2015

(child mentioned)

Are you having a follow-up with your RE? I'd be curious what he/she says.

To be honest, I think what to do next matters on your finances. If you've got the resources to take another swing...there's always the chance that you could hit on a lucky egg. Also, there are supplements that may help you increase your follicle count or recruit your healthiest eggs. I personally find a lot of what's in It Starts With the Egg voodoo, but some women swear by it and my RE actually did put me on a few of the same supplements for my upcoming cycle (whatever, whenever we decide to pull the trigger on that).

If you do decide to go donor egg, we're actually exploring that right now in our household. We just had DD in November from a round of IVF, but given my age (I just turned 41) part of us wants to just dodge the chance of damaged or bad eggs and go straight to a donor round. There's a lot to consider - where to source your egg, what to prioritize. But what I can tell you if you go that route is that I'm just as excited about a potential donor egg child as I was about the one with my own egg.

jnissa · March 2015

PS - if that was the response from your RE office, btw, I might consider looking for a new one.

GoldenKeys · March 2015

jnissa that finances would dictate my next steps as well. There have been some studies that allude to some improvement in egg quality from supplementation, but not enough to be an established fact in every case. The most reliable science shows things to avoid, having been proven to harm egg quality (smoking including 2nd hand smoke, BPA in plastic products, etc)

It would be very wise to explore donor eggs or even possibly embryo adoption. But if you have full coverage for IVF and can handle the wait, possibly going on an egg health program for 3 to 6 months before another round of IVF could be another option.

Whichever you choose to proceed, we will be here to support you... {HUGS}

DrthVdr · March 2015

I'm not sure how years of scientific research is voodoo, so I recommend that you read It Starts With the Egg. You can read and decide for yourself what changes (if any) you want to make. But my motto has been even if it doesn't help, it doesn't hurt, and how can I read something like that and ignore it?

Good luck - your RE should be speaking with you more. Just asking what you want to do is not acceptable.

Knottie4978096 · March 2015

I've been on those supplements for 6 months. BPA was banned years ago from my house. I've never smoked nor had any other "bad habits". From what I can tell it's rare (and that means very bad) to have a textbook perfect egg retrieval with near daily blood tests and scans to end up with an all abnormal PGS report. The statistics say 55% should be normal for my age and health.

I heard that I can try 1 more IVF, but likely it would end in a similar situation. I have an appt with my RE tomorrow morning, but we will most likely look at donor eggs. My sister wants to give me her eggs. I'm not sure if that's a possibility. It's just weird that they were so happy that 11 eggs were retrieve, 6 fertilized naturally and all were still alive when the report came in yesterday. Clearly, I have an excellent RE and lab. 4 embryos were missing 4 or more chromosomes, they were a complete mess. Just to educate everyone, if an embryo is missing half of a pair of chromosome, it's incompatible with life.

I'm thankful for the PGS testing. It saved me a lot of money in multiple failed IVFs, the heart ache of miscarriages and wasted cycles. At least we know what's wrong now and can make a better decision to move forward.

GoldenKeys · March 2015

It definitely sounds like you are on the right track! I plan to do PGS testing when we do IVF as well. It's awesome that your sister wants to help, and I hope that they will allow her to donate her eggs. Let us know what happens...

jnissa · March 2015

Well, here's what we always ask ourselves in our home. Will we be okay with whatever decision (ending, waiting, pushing forward) we make later on? I get that another round of IVF will be emotionally fraught and donor eggs are a great alternative (hence why we're looking at them). But even if the chances were 99% that the eggs would all be bad - you only need one (at my lab they'll only transfer one after a PGS and the success rates there are high). Later on, would you be okay with the fact that you passed on your last chance to get one of your own? The answer may be yes. It definitely is for me - I'd much rather opt for healthy donor eggs than another round of older egg IVF. But just make sure you're comfortable with that.

Also, I know the donor program at my center just did a sister to sister egg donation. Good luck with that! I would ultimately be ideal!

Keep us posted. Cheering for you.

Knottie4978096 · March 2015

We spoke to the RE yesterday. Yes, we can try 1 more round of IVF. She confirmed that our results would be similar, but might get 1 or 2 good embryos. The donor egg route with my sister is a similar process, except there has to be legal documents in place, similar to adoption. My sister is currently pregnant, so obviously isn't available right now. Besides, we need to save up again anyway.

In the meantime, I started a diet to get rid of the weight I've gained over the past year, and am trying melatonin. maybe I'll get lucky and my egg quality will improve with my health.

stillpraying4ababy · March 2015

im sorry to hear about your results. gload to see that your sister is willing to help you. thats an awesome option, once she is aval. what suppliments did or could you take to increase your follicle count? ive never heard of this... good luck with your next go around, whichever you decide

Knottie4978096 · March 2015

I took DHEA 25 mg twice per day. They recommend 3 times a day, but the side effects were too much for me. I also took CoQ10 once per day. The DHEA made a difference for me and it's often recommended for the over 40 crowd.

jnissa · March 2015

I'm glad you're feeling better

I can understand the devastation but you're quite fortunate to even get one more shot. And it only takes one - and you're also very lucky to have a sister who can donate eggs. What I can tell you for sure is if you do go that route you won't even remember that it's somebody else's egg once you see your child.

BAYOUWIFE · April 2015

I was 39, all blood work for my husband and I looked great, all my physical tests came out great along with my DH, when we started IVF. My first ER was with Menopur 75IU and Bravelle 75 IU, no supplements. We had 11 mature eggs, ended up with 3 to go to PGD, zero normal. I was devastated. Dr said lets try one more time. He said there are recent studies that 100% Menopur can help with quality. I went on only Menopur, Vit D, CoQ10 and baby aspirin. I also did acupuncture. Second ER we got 11 mature eggs, 3 went to PGS and we got 1 excellent embryo! It is possible. GL!

jnissa · April 2015

Oh, yes, we were 100% Menopur as well. Ask about that protocol.

Also, ask your RE about Coenzyme Q10 - it's actually also been shown to help improve the quality of eggs called down.

przemosbabe · April 2015

Ticker warning

But how do they know this isn't from your husband? My friend did IVF with donor eggs because she was thinking it was her eggs causin the problem. They did ccs testing on all the embryos and only one out of like 20 was normal. They found out that her husband had what is caused a balanced translocator. I would look into that before placing all the blame on yourself.

Also menopur has LH in it and a lot of LH can be very bad for a woman's eggs, depending on the woman and her diagnosis. I had success after 2 unsuccessful transfers with embryos from a cycle where my natural LH was very suppressed and they only added just a smidgen of low dose hcg.

Knottie01061671 · May 2015

We just did our first round of IVF and ended up in the same boat. Only had 2 embryos go to PGD but both abnormal. I was told by my RE that this is actually quite normal for the first round. We are immediately going again with a tweaked protocol (more Menopur). I know 3 other women who had the same outcome and went on to have healthy embryos . . .

GoldenKeys · May 2015

Knottie01061671 I'm wishing you the best of luck with your next round...

Knottie4978096 · May 2015

Well, I'm still mulling over what to do next. I added the CoQ10 and fish oil and now I feel like my breakfast consists of a fistful of pills. Lol.

Interesting to hear that an all-Menopur protocol can change things. I haven't really gotten any information from my RE except either DE or try IVF again. No additional testing or other suggestions of what is going on. I did have an all-Menopur IUI cycle. I only had 5 eggs though, not the 11 that I got this IVF round.

What test do they do on sperm? I'm currently unexplained and all my lab work and HSG came back normal. Should I ask for additional tests? I just got a DE quote from my RE for 55k and since my round of IVF was north of 25k, I doubt I'll be able to afford it (I had about 10k of insurance for IVF, but now I'm all out-of-pocket).

Oh and I wanted to ask about the PGS testing. Mine was done on day 3 and someone mentioned to me that it's unusual to do day 3 and that everyone does day 5. I didn't get a good explanation from my clinic. They just said that they don't see much of a difference between day 3 and 5.

Thanks everyone for the information. I will definitely be looking into these things. And I didn't know that other ladies that had my outcome have gone on to have normal embryos. My dr made me feel like the outcome was unexpected and that I was a freak.

GoldenKeys · May 2015

Knottie4978096 I'm sorry that your doctor made you feel bad about your results... he should have had a better plan in place, and had a better bedside manner!!

There are chromosomal anomaly tests that they can do on sperm, but I don't see that being done very often.

If you are still open to donor eggs, you might want to do some research on your own. You can definitely get donor eggs for less than $55k. There are egg banks that have healthy donor eggs for a round that could be anywhere from 10 to 20k, mostly from women who have successfully done IVF cycles and have leftover eggs that they will not destroy for personal reasons.
Also do you have any healthy relatives that you could talk about possible donation? I know it's rough to think about but I'm considering going that route myself.

As far as finances, I will be out of pocket for IVF too, but I plan to take out a medical loan and use a program that will refund most of my money if it fails.

I'm so sorry about the stress that you're going through. HUGS

jnissa · May 2015

I will come back later (Friday dranking, ya'll) to give you some more encouragement and thoughts, but I did just want to say that you should definitely do some research on donor eggs. It may even be financially worth it to travel to another clinic. We are prepping to do a donor egg round if our last IVF round doesn't work, and the estimated cost is $18-21k for a locally screened donor *where we get all the eggs.* Even if we used an agency to speed up the process, It's still under $25k. Even with travel expenses, it may be worth it to you to consider travel if you go to donor egg.

Knottie4978096 · May 2015

Yes, I'm definitely shopping. My sister volunteered to be my donor, but even so, my clinic charges $7800 to "coordinate a donor cycle". This fee is on top of monitoring and all the other charges. All the clinics in my area are similarly priced, so moving venues might be a better choice. My round of IVF was about $28k, but I did have partial insurance coverage, so it wasn't worth it to travel.

Incidentally, my clinic caters to foreign clientele who are gender selecting. I'm getting the impression that most of the clinics in my area are doing this.

jnissa · May 2015

I know this is a difficult subject, but I just wanted to say that I enjoy your general candor and even humor in some of these posts. I take my supplements in the pm because mornings are so unpredictable here and my husband and I joke that might nightstand officially looks like that of an 80 year old.

To be honest, gender selecting makes me sad. I can even logically understand the reasons to do it - especially for people with pre-existing children. Honestly, I can even understand the temptation to do it since we had such a strong gender preference the first time. I actually felt relieved that my clinic wouldn't even touch it in any way (they wouldn't even tell me if my embryos were different genders or not) because it removed the temptation.

Please keep checking in - we're definitely cheering for you here.

Knottie4978096 · May 2015

gender selection is illegal in these women's home countries and the pressure to have a son is crushing. I was a little shocked to see so many young women undergoing IVF. Statistically, they can't all be infertile and they do have IVF in their home countries at a much lower cost. I don't like it either, but they did give me the sex of the embryos on my PGS report and it was an option presented to me.

My guess is that the amount of fertile young women opting for IVF for gender selection is skewing the success rates in these clinics. Of course fertile women (who don't need IVF) are going to be more successful than us!

It is a difficult subject and I'm reminded how each step in this journey has presented itself with tougher decisions to make. Financial, time it takes to take home a baby, emotional and physical stress, weird remarks from friends and family. This is the hardest thing I've ever gone through. But as my dad always says, "this too shall pass."

I gained 30 lbs in the past year going through this. I've taken 20 off and am working on the rest. I'm hoping that this gives me enough time to figure out what we're going to do next. I'm sure it will all work out in the end (see a thread of hope is keeping me going).

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Devastated- IVF #1 all abnormal

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