First failed IVF... Should I seek a second opinion?

ssoennin · November 2014

I'm 39 with good AMH, mild endo on my ovaries, and good FSH. My husband is 42 and has only mild motility problems.

We used BCP, Ganirelix, Microdose Ovidrel, Follistim, and gonadtropin (sp?). I took prenatals, Calcium, vitamin D, and Metformin. We had some mix up with dosing of the Microdose Ovidrel due to nurse confusion (one nurse told me 20 units based on my syringe and the other told me 10 after I had been giving myself 20 for five days) and lots of mixed messages about whether we could do PGS or not. Doc said yes but nurses said no and doc said yes again after several days. Then, insurance approved PGS at the last minute after egg retrieval and they gave us 15 minutes to decide if we wanted it or not...which I'm glad we did (see below)! There were lots of miscommunications with my assigned nurse who was new to the practice... Denying that she got our emails and not posting things on our portal. Doc didn't review our blood test results with us for two weeks...added Metformin due to insulin resistance or something. She didn't even realize we got my husband's genetic screening back until I told her we had heard from Counsyl ourselves. I think she was on vacation at one point during our cycle as well, which is probably why our blood tests weren't reviewed sooner.

I had 14 follicles during stims. At egg retrieval, we had 8 eggs retrieved, 5 mature (1 over and two underdeveloped), 3 fertilized with ICSI, and one made it to blast at day six (5BC) that was abnormal with PGS testing. Our doc is known for not having the greatest bedside manner and called to tell me the embryo was abnormal in an excessively cheery voice. Lots of hope when I got the voicemail and immediately called back, and then I was crushed in a moment.

Not sure how much we can afford, but I'd like to do another round. Not sure husband will want to but we just got bad news. My doc wants to change from antagonist to lupron protocol. Add DHEA and baby aspirin. She said our results were unusual for someone with our profile.

I want to talk with her about all that happened in our cycle in our follow up meeting. Is this confusion during the process normal? Am I being unreasonable and too emotional about my concerns? I definitely know I need to be an advocate for myself in this process and I've tried to be, but I wonder.... Have others had this experience with their clinic?

Several people I know have gotten pregnant with her and a family friend works there as well and loves her job.

Has anyone gotten a second opinion after a first failed IVF? If so, how did you choose who to get that opinion from? Did anyone consult with CCRM or another clinic with great stats? How did you handle this with your doc?

Thanks in advance for any thoughts! My husband is out of town today so I don't have any distractions so I'm all up in my head.

jnissa · November 2014

I can't speak to your exact circumstance, but from a medical community perspective there should never be a time when nurses are giving you misinformation for days and there is a disconnect between what the nurses tell you and what the doctor tells you. If it were me, I would be moving on - not just getting a second opinion. That type of behavior isn't just about your cycle, it's unacceptable overall.

And, in general, a second opinion on anything medical is always a good idea. I'd start by looking at the success rates for all clinics in your area and narrow the list down that way.

katers79 · November 2014

I'm sorry that your first cycle ended the way it did. I switched RE's mid-testing before we began the process due to poor bedside manner, lack of communication, and privacy violations, and I'm so thankful we did. Listen to your gut-- if you're even pondering it, you need to act on it. I agree with @jnissa‌ -- there should never be a time when you're getting the wrong info. GL!

Hollowvic · November 2014

Sorry your first IVF cycle failed. I switched REs after a failed IUI, that she wasted our time and money on. We shouldn't have even qualified for an IUI with my husbands MFI. I couldn't imagine having done IVF with her after switching to my current RE. Although I am not thrilled with my current REs bedside manner, he is one of the best in my area. I know a handful of women who had sucess with him so that was enough for me. Even with him & his office I have a few gripes. The fact that you had such bad communication with the nurse would be a major red flag for me. I agree with @katers79‌ listen to your gut. It's just too important.

emmuffy · November 2014

Sorry about your bfn. Your cycle results are nearly identical to mine, except my one remaining embryo was a morula. A second opinion sounds like a good idea. My second opinion RE also recommended DHEA. I've since gone back to the first RE, who is willing to add HGH for my next cycle. Each cycle is such an investment, not only financially, but also mentally and physically. I highly recommend a second opinion so that you know your options and can be confident in your plan.

ssoennin · November 2014

@MeatandBandP Thank you for your feedback! It's good to know that you got a second opinion and feel good about it. You're so right...trust is so important especially with this kind of thing. I have a meeting with the doc on Thursday and plan to ask follow up questions and share my concerns.

ssoennin · November 2014

@jnissa Thanks for your thoughts! I am going to be frank with my current doc about what happened and how hard it made our process. I'm also going to ask if the med mix up could have affected my cycle.

I'm actually considering pay $300 and consulting via phone with CCRM. I dunno... when I'm reading the stats for the clinics in our city, they don't all sound good and/or the reviews are mixed. I'm also asking friends for recommendations, too...

ssoennin · November 2014

@katers79 You're right about the mixed info/wrong info. It's incredibly stressful! Good to know that you left mid-cycle. Glad you listened to your instincts, too! I think I'm going to talk with my current doc about my concerns and see what she says. That's going to be tough for me as I'm generally non-confrontational.

ssoennin · November 2014

@Hollowvic See...that's where I wonder if I have room to say anything! Part of me wonders if maybe I'm being too picky about minor things and if I'm just upset because our cycle didn't go well. If I'm honest, it's probably a bit of both. But the other things did make me incredibly upset through the process (before the upsetting end). Thank you for your thoughts!

Btw, how is your cycle going? I was in your group but haven't been reading updates (been hiding out and being sad).

ssoennin · November 2014

@emmuffy So good to know I'm not alone! *hugs* So sorry to hear about your cycle, too.

When you got your second opinion, what made you go back to the first doc? Was your first doc open to hearing the thoughts of your consulting doc?

ssoennin · November 2014

@ButtMonkey34 Thank you for sharing your similar story! (I read your signature...) Did they explain why you responded better with the lupron? Did they offer PGS to you?

I think my first step will be talking with my current doc about my concerns and see how that goes. This goes against my nature! I hate doing this kind of thing....

Hollowvic · November 2014

I understand how you feel. After a failed cycle you wonder if it's the doctor, the staff or just the anger of IF, The whole thing just sucks. I do think you can never go wrong with a second opinion though. My cycle is eh, beta is the 24th, my embryos were poor and my doctor gave me about a 10-15% chance for success so although I'm trying to stay hopeful, it's not easy. Thanks for asking.

ronniesgirl1981 · November 2014

What city are you in? The second opinion surely can't hurt...worst case scenario would be that s/he agrees with your current RE.

emmuffy · November 2014

ssoennin I went back to the first doctor because she was willing to add HGH to my next cycle and I am hopeful this will help with egg quality, while the second clinic does not offer this option. I shared the opinions of the second doctor with my first doctor and she was interested to hear them, but they didn't really change the approach. I think most doctors will understand the need to get different opinions after a failed IVF. If nothing else, it will help to know you've considered your options and left no stone unturned. GL

katers79 · November 2014

@ssoennin GL with your WTF apt-- I don't think you need to be confrontational, but come armed with your questions and expectations, and don't leave until you are satisfied with a plan. Be your own advocate, and they should be patient with all of your concerns and issues. Keep us posted!

CaringCat · November 2014

****bfp warning****

I would definitely seek a second opinion if I was in your situation and I was!! We went with a cheaper clinic and did 2 rounds of unsuccessful IVF. Their facilities were very dated and there was also some confusion about labs and how to proceed in the best way. Ultimately I had a very poor response with about 15 eggs at US but only 3 mature eggs with both cycles. We decided for the 3rd (and last attempt) to seek a 4th opinion (we had already bounced from 2 others during our clomid and IUI cycles!!) and I'm soooo glad we did. We ultimately bit the bullet and took out a fertility loan and went with the clinic with the best reviews and statistics and also considered their equipment/lab. We simply told our current RE that we were going to seek another opinion and then called the desk and had all the files transferred to the new clinic. Our RE was understanding and actually recommended donor eggs as our next step, which was something they didn't do there. Our new RE had a completely different protocol to try with me and it worked like a charm. 9 eggs retrieved, 5 blasts and a BFP this cycle. I was extremely hesitant to switch clinics because of the wasted time, extra money, etc. I'm so glad DH convinced me to. Good luck to you!

suebudgie · November 2014

If you had so few eggs retrieved, maybe they should not have bothered with doing pgs. So expensive. Although perhaps this saved you from having to pay for the IVF service in full? I assumed it was never transferred. Hopefully you still have some insurance left for your next very successful cycle.

I say leave this clinic right away. And dont look back. You say you hate confrontation. Don't even bother talking to this dr. You already said you hate his bedside manner. What will talking accomplish? You can talk to a brand new doctor at ccrm or wherever and they'll recommend the same thing? It's not like you get a discount for trying again with them and their incompetence. IVF is stressful enough without having misinformation or no information being passed to you. And poor judgement and lack of consideration and care. Complaints will get you worse service.

Good luck to you. I wish you all sticky baby dust.

katers79 · November 2014

@suebudgie‌ Please don't use the phrase baby dust-- it is a trigger for those who have suffered a loss.

Rangiroa · November 2014

@ssoennin‌ I have to agree with most of the PPs. You need to be comfortable that your clinic knows what they're doing. Miscommunication about doses and not reading your bloodwork is not acceptable. IF is stressful enough without all that.

Dr. Surrey at CCRM has great bedside manner. And he will have a real discussion with you about options during your phone consult, not just tell you to come see them. It's probably worth the call, even if you want to stay local.

ssoennin · January 2018

Just wanted to write an update to say that I did end up going to CCRM (the flagship one) and Dr. Surrey was my doc there. My nurse was fantastic and like a therapist/nurse/support person all rolled in one! We did a much different protocol...the doctor reviewed all my records and we did the ODWU. I did three months of the female vitamin cocktail. I was in their acai berry study for three months. They found my husband's sperm problem (he had a bad one!), which I suspected after obsessively reading the forums. And he did a male vitamin cocktail. I did estrogen priming...and was on protocol five (the kitchen sink protocol), and I cycled at 40 (hubby was 43). I almost ovulated so they did an early emergency egg retrieval (less than 24 hours after the trigger shot...they'd planned two trigger shots and I only did one). In the lab after retrieval, they did IMSI and PICSI with his sperm instead of just ICSI. They also used calcium ionophore. We had 12 retrieved (my right ovary didn't come to the party)...one more than they were tracking, which was much different than the first RE. 9 were mature, 6 fertilized properly, and all six made blast, which was vastly different than our first RE. They did CCS testing, and we got two normal embryos! My son will be 18 months old this January (we transferred one); I had complications from postpartum preeclampsia so we won't try for another. And I still can't believe he's real. The CCRM Support facebook group is amazing (just fyi). Posting this here because my story had a happy ending and to let people know not to give up. If you feel like something isn't right, trust your instincts, ask questions, do your research, and fight. This board was a lifesaver when I was drowning. So thank you!

cseley321 · January 2018

Glad to hear you had a happy ending

tinjp78 · January 2018

@ssoennin Thanks for updating us on your good news. Congratulations!

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