I got kicked out of Shady Grove's shared risk yesterday

[Anonymous]

I would get copies of all my records from Shady Grove and take them to be reviewed by at least two more doctors.

[Anonymous]

OP here -

I'm not a poor responder, if anything I almost hyper respond. My estrogen level rises faster than my follicle growth which always results in having to seriously cut meds during my cycle. I started out last cycle taking 225 Gonal F and 150 Menopur and ended up at 37.5 of each.
My nurse and I have actually talked about the idea that I possibly have mild PCOS.

I'm not anti DE, I just am frustrated right now. I asked after the first cycle if the least painful most cost productive thing to do would move to DE and I was badgered into a second traditional IVF cycle, I still don't quite understand the reasoning behind it. I though really would like to understand what's going on with my eggs and if it's even possible to have another OE child so I can make a decent well informed decision.

I'm scared about SGF's donor egg program, their stats aren't that great and the way they stick to their cookie cutter protocol bothers me. If I'm going to do donor egg going to RBA seems to make more sense.

I don't think it's realistic for me to cycle traditionally with an out of town clinic, but maybe there's a local doctor that will work with a recommended protocol?

21:03 I'm sorry for your loss Are you going to take a break or have you thought about next steps? This shouldn't be that hard, it's so discouraging.

[Anonymous]

Anonymous wrote:Ditto second opinion.

I just finished my 5th cycle with DEIVF in SG's shared risk program and we are withdrawing. We used three different donors and RE didn't even attempt to change our protocols until prior to our 5th try (4 prior BFNs). We got a BFP for the 5th try but have since been diagnosed with a blighted ovum and are hoping that we miscarry naturally (stopped meds 8 days ago). Maybe I'm just bitter, but I'm pretty unimpressed with their program, donors, etc.

Ugh, I'm so sorry. Five failed DE cycles has to be incredibly frustrating. I hate to even bring this up but have you considered surrogacy? It sounds like there could be some sort of unresolved uterine issue.

[Anonymous]

OP if you hyper stimmed then why didn't they start on a lower dose and increased later.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Ditto second opinion.

I just finished my 5th cycle with DEIVF in SG's shared risk program and we are withdrawing. We used three different donors and RE didn't even attempt to change our protocols until prior to our 5th try (4 prior BFNs). We got a BFP for the 5th try but have since been diagnosed with a blighted ovum and are hoping that we miscarry naturally (stopped meds 8 days ago). Maybe I'm just bitter, but I'm pretty unimpressed with their program, donors, etc.

Ugh, I'm so sorry. Five failed DE cycles has to be incredibly frustrating. I hate to even bring this up but have you considered surrogacy? It sounds like there could be some sort of unresolved uterine issue.

(21:03 here...)

Thanks... it has been a little over two years and has been very frustrating. After our third BFN and second donor, I questioned the RE re: DH's sperm quality and any issues on my end. RE basically said that as long as we were getting high graded embryos (we were) that he did not think there was a sperm issue and we did a bunch of saline sonograms looking for scarring, more bloodwork, etc. After the fourth BFP, RE decided to send DH for karotyping (sp?) to see if there was a chromosomal realignment that was causing an issue with implantation. They finally tested me and found a high % of NK cells (natural killer) and put me on steroids and a blood thinner as they decided that perhaps my NK cells were attacking the embryo and not allowing it to implant. We were STUNNED and so happy to get a BFP on the 5th round, but found an empty sac at my 6 and 7 week u/s. At this point the RE just said that there are clearly issues with the embryos, and perhaps they were sperm related but they really just couldn't say, and he couldn't give us any reason to believe that a 6th try would work.

As for surrogacy, where they can't give me any good info about DH's sperm potentially being the issue (after saying unequivocally no, then maybe, then we have no clue) we've decided to move onto adoption (though we have not made a move -- this has all happened in the last two weeks). Also, when we researched surrogacy minimally, we were hearing anywhere between $50-75K. We just aren't financially able to do something that still can't guarantee us a child.

When we learned that I had an issue with my eggs, we had discussed moving directly to adoption and were totally open to it but decided that we would try SG's shared risk because it seemed like we had nothing to lose -- the stats seemed so great and with so many tries we figured it would happen for us, and unfortunately we were the ones who had to be at the losing end of the stats. We did the 1:3 shared donor, shared risk and my frustration was that with a fresh and frozen cycle with donor 1 -- none of us got pregnant. With donor 2 we only had a fresh cycle and 1 got pregnant and my understanding is that the pregnancy was not continued. With donor 3 we had a fresh and frozen - I got pregnant on the frozen and I believe that 1 got pregnant on the first fresh cycle with her. It just seems like much lower % than they share with their stats. We had a tough time choosing a donor each time because as pps have mentioned, they aren't that great and there aren't that many. Their medical histories specifically were our biggest concern -- though DH and I rationalized choosing them by the fact that there are some cancer/heart/etc issues in my family to begin with. Looking back, I have to say that I wish we researched options other than SG when we decided to move on to DE.

Sorry to hijack and sorry so rambling! Anyway -- we need to research the adoption side of things. I've spoken to a colleague recently who had a somewhat quick success with American Adoptions and we also have a private adoption attorney that we are going to talk to. As mentioned, I am hoping to miscarry naturally soon so we can close this chapter and start moving onto our next step. I'm 40, DH is 39 and it's been a long journey that we are anxious to put behind us.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Ditto second opinion.

I just finished my 5th cycle with DEIVF in SG's shared risk program and we are withdrawing. We used three different donors and RE didn't even attempt to change our protocols until prior to our 5th try (4 prior BFNs). We got a BFP for the 5th try but have since been diagnosed with a blighted ovum and are hoping that we miscarry naturally (stopped meds 8 days ago). Maybe I'm just bitter, but I'm pretty unimpressed with their program, donors, etc.

Ugh, I'm so sorry. Five failed DE cycles has to be incredibly frustrating. I hate to even bring this up but have you considered surrogacy? It sounds like there could be some sort of unresolved uterine issue.

(21:03 here...)

Thanks... it has been a little over two years and has been very frustrating. After our third BFN and second donor, I questioned the RE re: DH's sperm quality and any issues on my end. RE basically said that as long as we were getting high graded embryos (we were) that he did not think there was a sperm issue and we did a bunch of saline sonograms looking for scarring, more bloodwork, etc. After the fourth BFP, RE decided to send DH for karotyping (sp?) to see if there was a chromosomal realignment that was causing an issue with implantation. They finally tested me and found a high % of NK cells (natural killer) and put me on steroids and a blood thinner as they decided that perhaps my NK cells were attacking the embryo and not allowing it to implant. We were STUNNED and so happy to get a BFP on the 5th round, but found an empty sac at my 6 and 7 week u/s. At this point the RE just said that there are clearly issues with the embryos, and perhaps they were sperm related but they really just couldn't say, and he couldn't give us any reason to believe that a 6th try would work.

As for surrogacy, where they can't give me any good info about DH's sperm potentially being the issue (after saying unequivocally no, then maybe, then we have no clue) we've decided to move onto adoption (though we have not made a move -- this has all happened in the last two weeks). Also, when we researched surrogacy minimally, we were hearing anywhere between $50-75K. We just aren't financially able to do something that still can't guarantee us a child.

When we learned that I had an issue with my eggs, we had discussed moving directly to adoption and were totally open to it but decided that we would try SG's shared risk because it seemed like we had nothing to lose -- the stats seemed so great and with so many tries we figured it would happen for us, and unfortunately we were the ones who had to be at the losing end of the stats. We did the 1:3 shared donor, shared risk and my frustration was that with a fresh and frozen cycle with donor 1 -- none of us got pregnant. With donor 2 we only had a fresh cycle and 1 got pregnant and my understanding is that the pregnancy was not continued. With donor 3 we had a fresh and frozen - I got pregnant on the frozen and I believe that 1 got pregnant on the first fresh cycle with her. It just seems like much lower % than they share with their stats. We had a tough time choosing a donor each time because as pps have mentioned, they aren't that great and there aren't that many. Their medical histories specifically were our biggest concern -- though DH and I rationalized choosing them by the fact that there are some cancer/heart/etc issues in my family to begin with. Looking back, I have to say that I wish we researched options other than SG when we decided to move on to DE.

Sorry to hijack and sorry so rambling! Anyway -- we need to research the adoption side of things. I've spoken to a colleague recently who had a somewhat quick success with American Adoptions and we also have a private adoption attorney that we are going to talk to. As mentioned, I am hoping to miscarry naturally soon so we can close this chapter and start moving onto our next step. I'm 40, DH is 39 and it's been a long journey that we are anxious to put behind us.

PP, just so that you know, a blighted ovum is considered symptomatic of unresolved immune problems. I was also diagnosed with high NK cells (after too many failures to count). It took 4 years, but we were finally successful with a combination of steroids, blood thinners and regular infusions of IVIG. I had my first DD in 2011 and got pregnant with #2 on the first try using the same protocol (am now 17 weeks). It sounds to me like you got the right diagnosis but weren't treated aggressively enough. Steroids and blood thinners alone weren't enough for me. I know you've decided to move on to adoption, but I just wanted you to know about my experience. Good luck!

[Anonymous]

23:13, I'm not the OP, but I'd like to ask where you had your testing and treatment done? Thank you.

[Anonymous]

Anonymous wrote:OP here -

I'm not a poor responder, if anything I almost hyper respond. My estrogen level rises faster than my follicle growth which always results in having to seriously cut meds during my cycle. I started out last cycle taking 225 Gonal F and 150 Menopur and ended up at 37.5 of each.
My nurse and I have actually talked about the idea that I possibly have mild PCOS.

I'm not anti DE, I just am frustrated right now. I asked after the first cycle if the least painful most cost productive thing to do would move to DE and I was badgered into a second traditional IVF cycle, I still don't quite understand the reasoning behind it. I though really would like to understand what's going on with my eggs and if it's even possible to have another OE child so I can make a decent well informed decision.

I'm scared about SGF's donor egg program, their stats aren't that great and the way they stick to their cookie cutter protocol bothers me. If I'm going to do donor egg going to RBA seems to make more sense.

I don't think it's realistic for me to cycle traditionally with an out of town clinic, but maybe there's a local doctor that will work with a recommended protocol?

21:03 I'm sorry for your loss Are you going to take a break or have you thought about next steps? This shouldn't be that hard, it's so discouraging.

OP, at least do a couple phone consults with some of the top docs or at least that is what I would do, and did. And if you do decide to move on to DE, I'd think hard before doing that at SG! Just my two cents. Good luck.

[Anonymous]

OP, Dr. Abbasi at CFA is pretty flexible about trying new things with protocols used by other clinics. She'll also do immune testing in conjunction with the Alan Beer Center in California.

The only problem with using other protocols is she's not actually working with the other clinics who developed the protocol and I didn't get the sense that she really understood them. For example, she tried using a microdose lupron protocol that other places have used and it was a disaster. I got a second opinion elsewhere and was told there were several issues with how the protocol was set up. Others have had success with her which is why I decided to give it a try.

I'm the PP who is doing an out of town cycle now. I didn't think it was going to work for us but it has turned out to be easier than I thought. However, there are lots of other clinics locally where you can get a second or third opinion. Although it's a pain to set up the appointments, I think it's well-wortth it to find someone you have confidence in.

[Anonymous]

OP - Why was the 2nd IVF a 6-day transfer and not a 5-day? And yeah, you're SO not a poor responder. I'm so sorry :-/

[Anonymous]

OP - sounds like you have plenty of eggs but have not been on a good protocol to assure/preserve egg quality. Your eggs are likely cooked by the time they are retrieved. And your DH sperm quality could also be an issue.

The poster who had 5 failed DE - I am sorry. I cannot begin to imagine the pain and frustration. Sounds like you may want to explore immune issues further. I am surprised a doctor at SG agreed to test NK cells. Mine did not. I pursued immune testing with Dr Sher and Dr Braverman. They both do phone consults. Were the donors proven? In any case, 5 transfers of young donor eggs could be either donor issue, sperm issue or immune issue.

[Anonymous]

Not a poor responder but only 3 out of 19 eggs fertilized and you got a bfn, so you need a protocol or no stim meds to produce quality not quantity.

[Anonymous]

I would try NC at Dominion. You have eggs, but the drugs are frying them. Good luck whatever you decide. You can also get immune testing done by SIRM.

[Anonymous]

Anonymous wrote:I'm 38, have one child conceived at 35, all test results including AMH normal.
Two failed IUIs last year with clomid, moved on to IVF this year. I've posted about some of my poor cycles before.

1st cycle Antagonist protocol - stimmed for 16 days, 19 eggs, only 3 fertilized normally. No one was sure what happened, if it was protocol or an egg quality issue.
2nd cycle Antagonist with Estrogen priming - I wasn't able to prime as long as we wanted as I had a very short luteal phase that cycle, much better overall response, stimmed 14 days, 16 eggs retrieved, 14 normal and 13 fertilized. Pushed to a day 5/6 transfer as 10 out of the 13 were doing well on day 3. Ended up being a six day transfer with 1 fair and 2 poor blasts.

There was absolutely no interest in trying to move forward with my own eggs, just said it's egg quality and if you want to move forward you have to move to donor eggs.

Should I get second opinions? Move to donor egg with SGF?

I had done a phone consult at RBA after my first cycle and they said (without records because SGF was being a pain) it was absolutely a protocol issue.

I feel like I'm stuck in a marriage with SGF, wouldn't have to deal with obtaining financing again and I know how they work. Are they bad enough to actually leave?

Before moving to donor egg, please visit George Washington University's Fertlity and IVF! Ask for doctor Frankfurter! They are great. They never turn anyone down! Especially since you have good AMH. when none of the usual protocols worked for me, dr. Frankfurter tweaked protocols and there I was pregnant on the 4th round of IVF(at 39 with poor AMH, high FSH). You will see how encouraging the entire staff are.

[Anonymous]

PP here, another thing is that Shady Grove is all about numbers (for advertising purposes)! They want their umbers to be high(pregnancy rates), whereas GWU is a teaching hospital. They don't care about numbers.