RE: Grad from High FSH Playgroup and delurking to ask questions for friend doing DE

RE: Grad from High FSH Playgroup and delurking to ask questions for friend doing DE

Joined: October 18th, 2006, 11:30 pm

September 3rd, 2012, 6:56 pm #1

Hi everyone,
I have been reading this board off and on for about 8 years as I have high FSH. Anyway, I have a friend who turned 48 in March. She is married to a man 10 years younger than herself and tried to get pregnant with OE and then she had a miscarriage. She has a 20 year old daughter from previous marriage which took her a while to conceive. She has ALWAYS had erratic periods and about a year ago stopped having them altogether. I was with her during her ET as her DH was out of town. They transferred 2 8 cell blastocysts from a 28 year old donor. They were the cream of the crop embryos. On her first beta her levels were 101. Her second it was 78 and then on Saturday they were at 32.
The meds she was taking were Crinone shots, progesterone, Estradiol, baby aspirin and some sort of steroid. Her clinic is Aca.cio Cli.nic in Oran.ge Cou.ty, CA. They told her that last year they had a 100% success rate with DE so she is thinking she is the biggest failure ever! My thoughts are that she might have some sort of immune issue and that could account for the fact that she has never had a normal period in her entire life, (I've known her for 26 years) she had trouble conceiving in her 20s, had a m/c in her mid-40s and now had a chemical with IVF-DE at 48 years old. What do you guys think and what would you recommend she do now? They haven't even told her how many embryos were frozen after ER. I thought her doc said 3 were frozen, she thought 4 and then a nurse said only 1 was frozen. Needless to say, she is beyond depressed and doesn't know what to do now!!
Thanks ladies,
Toni from the Playgroup!!
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Trixicat
Trixicat

September 3rd, 2012, 10:02 pm #2

If that clinic really told her they had 100% success rate with DE, she should change clinics because they are lying to her. Nobody has 100% success rates. The best clinics in the country have about a 75%-80% success rate with donor eggs and the more average ones have in the neighborhood of 50%; you can look that up on www.SART.org (go here, then click on a state and scroll to the clinics you want to check:http://www.sart.org/find_frm.html).

Even apart from the fact that it sounds like they lied to her, the clinic your friend went to does not even have its success rates posted on SART.org--that makes me very suspicious. I would never waste my time and money on a clinic that doesn't reveal its success rates. Based on the fact that this is apparently a small no-name clinic (sorry, I'm blunt), and they don't reveal their success rates but they claim it was 100% last year, there are two possibilities here: (1) they're just lying, or (2) they do hardly any donor egg cycles at all, but last year they did one or a handful of them and by coincidence all the women (like... all three of them or whatever!) happened to get pregnant. And it doesn't matter whether it's (1) or (2) that's true; either way she should go to another clinic. You can't go to a clinic that lies to you, and it's a waste of money to go to a clinic that doesn't have much experience with the thing you need.

As for her cycles, I'm not a doctor but I've researched infertility up the wazoo and I have never heard of an immune issue (in the sense of the immune issues that sometimes cause miscarriage or failure to implant) having any effect on a woman's menstrual cycle. When the cycle is wacky, the hormones are wacky--not the immune system. Something's obviously wacky in her system, since her cycles are irregular, but I highly doubt that's why her DE cycle didn't work. DE usually works but not always; depending on the clinic, there's between a 20-25% and 50% chance of failure. Your friend just fell within that 20-50% of failures. It's not her fault. But she should change clinics for the reasons mentioned above, although it might be worth trying a FET cycle with whatever is left. I just wouldn't do another donor cycle with them.

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Joined: January 19th, 2007, 7:18 pm

September 3rd, 2012, 11:23 pm #3

Hi everyone,
I have been reading this board off and on for about 8 years as I have high FSH. Anyway, I have a friend who turned 48 in March. She is married to a man 10 years younger than herself and tried to get pregnant with OE and then she had a miscarriage. She has a 20 year old daughter from previous marriage which took her a while to conceive. She has ALWAYS had erratic periods and about a year ago stopped having them altogether. I was with her during her ET as her DH was out of town. They transferred 2 8 cell blastocysts from a 28 year old donor. They were the cream of the crop embryos. On her first beta her levels were 101. Her second it was 78 and then on Saturday they were at 32.
The meds she was taking were Crinone shots, progesterone, Estradiol, baby aspirin and some sort of steroid. Her clinic is Aca.cio Cli.nic in Oran.ge Cou.ty, CA. They told her that last year they had a 100% success rate with DE so she is thinking she is the biggest failure ever! My thoughts are that she might have some sort of immune issue and that could account for the fact that she has never had a normal period in her entire life, (I've known her for 26 years) she had trouble conceiving in her 20s, had a m/c in her mid-40s and now had a chemical with IVF-DE at 48 years old. What do you guys think and what would you recommend she do now? They haven't even told her how many embryos were frozen after ER. I thought her doc said 3 were frozen, she thought 4 and then a nurse said only 1 was frozen. Needless to say, she is beyond depressed and doesn't know what to do now!!
Thanks ladies,
Toni from the Playgroup!!
I agree with Trixicat in part & disagree in part.

I did not go to that clinic, so these comments are based on things I've learned from the boards over the years rather than personal experience.

I would not call this clinic a small, no-name clinic. The RE used to be with SIRM, which also doesn't participate in SART. Whether one agrees or disagrees, not all clinics participate. I would imagine SIRM's reasons are easy enough to find on the web. The clinic does have stats listed on its website. Dr. A. deals with immune issues, so his name comes up on & off on the boards. As far as I was aware, he had a good reputation.

All of that said, 100% is a very strange comment to make. I suppose there might be some scenario under which it might be true, but there would be a heck of a lot of luck involved & for what time period, as one of our board members had a failure with that clinic. 50% is the average, last I read. The top clinics in the country claim 80% & that has also been subject to some discussion over the years (cherry picking, etc.). (I see, just now, that he is claiming a 95% DE success rate for 2009. I wonder how many cycles that is.)

She is far from a failure. Many, many women do their 1st DE cycle thinking it's a sure thing & it is often sold that way, but it's not. A lot of us had to do more than 1. Some of us think we figured out issues & fixed them, some of us just kept cycling. It took me 2 fresh cycles & 2 FETs to have my 1st child & another fresh failure before having my 2nd child on a FET. In my case, I do believe it was immune-related & I did very aggressive testing & treatment before succeeding. But others have done different things or nothing at all beyond continuing to try.

I know how devastating it is to fail a DE cycle, having been there & more than once. It's surreal. But please assure her she is not a failure. Often it does seem to be just an embryo issue. Youth alone does not guarantee viable embryos. A study a while back found 50% of donor egg embryos to be abnormal & you can't tell abnormality from appearance, so please let her know this doesn't mean she will not have a family with her new dh. There is plenty of reason to hope.

Quite a few clinics do free consults, so she can always get 2nd & 3rd opinions before doing a FET, if that helps her. To the extent she's able, or if you are able to help, I think I would find some infertility boards & try to get a feel for how others with personal experience are viewing this clinic currently. Since I'm no longer in the trenches, I haven't kept up with much regarding clinics & ttc. As an "undesirable patient," though, I had some interesting experiences & I have to confess that I'm skeptical of clinics claiming high success rates while also doing right by hard(er) cases.

Last edited by ariadne2 on September 3rd, 2012, 11:28 pm, edited 1 time in total.
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Dee
Dee

September 3rd, 2012, 11:41 pm #4

If that clinic really told her they had 100% success rate with DE, she should change clinics because they are lying to her. Nobody has 100% success rates. The best clinics in the country have about a 75%-80% success rate with donor eggs and the more average ones have in the neighborhood of 50%; you can look that up on www.SART.org (go here, then click on a state and scroll to the clinics you want to check:http://www.sart.org/find_frm.html).

Even apart from the fact that it sounds like they lied to her, the clinic your friend went to does not even have its success rates posted on SART.org--that makes me very suspicious. I would never waste my time and money on a clinic that doesn't reveal its success rates. Based on the fact that this is apparently a small no-name clinic (sorry, I'm blunt), and they don't reveal their success rates but they claim it was 100% last year, there are two possibilities here: (1) they're just lying, or (2) they do hardly any donor egg cycles at all, but last year they did one or a handful of them and by coincidence all the women (like... all three of them or whatever!) happened to get pregnant. And it doesn't matter whether it's (1) or (2) that's true; either way she should go to another clinic. You can't go to a clinic that lies to you, and it's a waste of money to go to a clinic that doesn't have much experience with the thing you need.

As for her cycles, I'm not a doctor but I've researched infertility up the wazoo and I have never heard of an immune issue (in the sense of the immune issues that sometimes cause miscarriage or failure to implant) having any effect on a woman's menstrual cycle. When the cycle is wacky, the hormones are wacky--not the immune system. Something's obviously wacky in her system, since her cycles are irregular, but I highly doubt that's why her DE cycle didn't work. DE usually works but not always; depending on the clinic, there's between a 20-25% and 50% chance of failure. Your friend just fell within that 20-50% of failures. It's not her fault. But she should change clinics for the reasons mentioned above, although it might be worth trying a FET cycle with whatever is left. I just wouldn't do another donor cycle with them.
there is no such thing as 100% success rate, and she should definitely change clinics.
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Piper
Piper

September 4th, 2012, 12:00 am #5

Hi everyone,
I have been reading this board off and on for about 8 years as I have high FSH. Anyway, I have a friend who turned 48 in March. She is married to a man 10 years younger than herself and tried to get pregnant with OE and then she had a miscarriage. She has a 20 year old daughter from previous marriage which took her a while to conceive. She has ALWAYS had erratic periods and about a year ago stopped having them altogether. I was with her during her ET as her DH was out of town. They transferred 2 8 cell blastocysts from a 28 year old donor. They were the cream of the crop embryos. On her first beta her levels were 101. Her second it was 78 and then on Saturday they were at 32.
The meds she was taking were Crinone shots, progesterone, Estradiol, baby aspirin and some sort of steroid. Her clinic is Aca.cio Cli.nic in Oran.ge Cou.ty, CA. They told her that last year they had a 100% success rate with DE so she is thinking she is the biggest failure ever! My thoughts are that she might have some sort of immune issue and that could account for the fact that she has never had a normal period in her entire life, (I've known her for 26 years) she had trouble conceiving in her 20s, had a m/c in her mid-40s and now had a chemical with IVF-DE at 48 years old. What do you guys think and what would you recommend she do now? They haven't even told her how many embryos were frozen after ER. I thought her doc said 3 were frozen, she thought 4 and then a nurse said only 1 was frozen. Needless to say, she is beyond depressed and doesn't know what to do now!!
Thanks ladies,
Toni from the Playgroup!!
I have a serious problem with doctors who refuse to comply with the Wyden Act and list their statistics. Yes, I understand that the system is flawed BUT it is what we have to work with.

I notice that this doctor lists very high statistics but leaves out the number of cycles he is basing them on--that would be a significant piece of information.

Did your friend transfer three day 8 cell embryos or blastocysts? You mentioned 8 cell blasts, so somewhere a piece of information is lost.

Why doesn't she know how many eggs were retrieved? How many were fertilized? And how on earth could she not know how many were frozen? These are her embryos--they do not belong to the clinic. She should have these numbers.

And nobody has 100% success rates--unless they only did 4-5 cycles and they all worked.

She needs to get some answers...
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Joined: December 2nd, 2005, 3:49 pm

September 4th, 2012, 12:19 am #6

Hi everyone,
I have been reading this board off and on for about 8 years as I have high FSH. Anyway, I have a friend who turned 48 in March. She is married to a man 10 years younger than herself and tried to get pregnant with OE and then she had a miscarriage. She has a 20 year old daughter from previous marriage which took her a while to conceive. She has ALWAYS had erratic periods and about a year ago stopped having them altogether. I was with her during her ET as her DH was out of town. They transferred 2 8 cell blastocysts from a 28 year old donor. They were the cream of the crop embryos. On her first beta her levels were 101. Her second it was 78 and then on Saturday they were at 32.
The meds she was taking were Crinone shots, progesterone, Estradiol, baby aspirin and some sort of steroid. Her clinic is Aca.cio Cli.nic in Oran.ge Cou.ty, CA. They told her that last year they had a 100% success rate with DE so she is thinking she is the biggest failure ever! My thoughts are that she might have some sort of immune issue and that could account for the fact that she has never had a normal period in her entire life, (I've known her for 26 years) she had trouble conceiving in her 20s, had a m/c in her mid-40s and now had a chemical with IVF-DE at 48 years old. What do you guys think and what would you recommend she do now? They haven't even told her how many embryos were frozen after ER. I thought her doc said 3 were frozen, she thought 4 and then a nurse said only 1 was frozen. Needless to say, she is beyond depressed and doesn't know what to do now!!
Thanks ladies,
Toni from the Playgroup!!
My clinic was very upfront about my embryos at every stage of development and if I called to ask questions they'd let me talk directly to the embryologist. It was a great clinic and I think the DE success rate was around 70%. I would run, not walk, to a different clinic. And given her history, I would do at least basic immune testing and maybe an HSG if she didn't do that pre-cycle. Really, at her age she needs to be smart and not waste time. Even if they aren't her eggs, the younger she is the better. She doesn't want to find herself at 50 doing what she should have done now. I wish her lots of luck!
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Anonymous
Anonymous

September 4th, 2012, 12:34 am #7

Hi everyone,
I have been reading this board off and on for about 8 years as I have high FSH. Anyway, I have a friend who turned 48 in March. She is married to a man 10 years younger than herself and tried to get pregnant with OE and then she had a miscarriage. She has a 20 year old daughter from previous marriage which took her a while to conceive. She has ALWAYS had erratic periods and about a year ago stopped having them altogether. I was with her during her ET as her DH was out of town. They transferred 2 8 cell blastocysts from a 28 year old donor. They were the cream of the crop embryos. On her first beta her levels were 101. Her second it was 78 and then on Saturday they were at 32.
The meds she was taking were Crinone shots, progesterone, Estradiol, baby aspirin and some sort of steroid. Her clinic is Aca.cio Cli.nic in Oran.ge Cou.ty, CA. They told her that last year they had a 100% success rate with DE so she is thinking she is the biggest failure ever! My thoughts are that she might have some sort of immune issue and that could account for the fact that she has never had a normal period in her entire life, (I've known her for 26 years) she had trouble conceiving in her 20s, had a m/c in her mid-40s and now had a chemical with IVF-DE at 48 years old. What do you guys think and what would you recommend she do now? They haven't even told her how many embryos were frozen after ER. I thought her doc said 3 were frozen, she thought 4 and then a nurse said only 1 was frozen. Needless to say, she is beyond depressed and doesn't know what to do now!!
Thanks ladies,
Toni from the Playgroup!!
...and it sounds similar, they told her glowing things about wildly high success rates, but without actually publishing them. She was not successful either and it made her feel awful, like she was the only one. I would be very skeptical of this clinic and their claims.
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Toni
Toni

September 4th, 2012, 2:45 am #8

If that clinic really told her they had 100% success rate with DE, she should change clinics because they are lying to her. Nobody has 100% success rates. The best clinics in the country have about a 75%-80% success rate with donor eggs and the more average ones have in the neighborhood of 50%; you can look that up on www.SART.org (go here, then click on a state and scroll to the clinics you want to check:http://www.sart.org/find_frm.html).

Even apart from the fact that it sounds like they lied to her, the clinic your friend went to does not even have its success rates posted on SART.org--that makes me very suspicious. I would never waste my time and money on a clinic that doesn't reveal its success rates. Based on the fact that this is apparently a small no-name clinic (sorry, I'm blunt), and they don't reveal their success rates but they claim it was 100% last year, there are two possibilities here: (1) they're just lying, or (2) they do hardly any donor egg cycles at all, but last year they did one or a handful of them and by coincidence all the women (like... all three of them or whatever!) happened to get pregnant. And it doesn't matter whether it's (1) or (2) that's true; either way she should go to another clinic. You can't go to a clinic that lies to you, and it's a waste of money to go to a clinic that doesn't have much experience with the thing you need.

As for her cycles, I'm not a doctor but I've researched infertility up the wazoo and I have never heard of an immune issue (in the sense of the immune issues that sometimes cause miscarriage or failure to implant) having any effect on a woman's menstrual cycle. When the cycle is wacky, the hormones are wacky--not the immune system. Something's obviously wacky in her system, since her cycles are irregular, but I highly doubt that's why her DE cycle didn't work. DE usually works but not always; depending on the clinic, there's between a 20-25% and 50% chance of failure. Your friend just fell within that 20-50% of failures. It's not her fault. But she should change clinics for the reasons mentioned above, although it might be worth trying a FET cycle with whatever is left. I just wouldn't do another donor cycle with them.
I am going to tell her everything you just wrote! Thanks you for this info! This will help her be more informed!
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Toni
Toni

September 4th, 2012, 2:48 am #9

I agree with Trixicat in part & disagree in part.

I did not go to that clinic, so these comments are based on things I've learned from the boards over the years rather than personal experience.

I would not call this clinic a small, no-name clinic. The RE used to be with SIRM, which also doesn't participate in SART. Whether one agrees or disagrees, not all clinics participate. I would imagine SIRM's reasons are easy enough to find on the web. The clinic does have stats listed on its website. Dr. A. deals with immune issues, so his name comes up on & off on the boards. As far as I was aware, he had a good reputation.

All of that said, 100% is a very strange comment to make. I suppose there might be some scenario under which it might be true, but there would be a heck of a lot of luck involved & for what time period, as one of our board members had a failure with that clinic. 50% is the average, last I read. The top clinics in the country claim 80% & that has also been subject to some discussion over the years (cherry picking, etc.). (I see, just now, that he is claiming a 95% DE success rate for 2009. I wonder how many cycles that is.)

She is far from a failure. Many, many women do their 1st DE cycle thinking it's a sure thing & it is often sold that way, but it's not. A lot of us had to do more than 1. Some of us think we figured out issues & fixed them, some of us just kept cycling. It took me 2 fresh cycles & 2 FETs to have my 1st child & another fresh failure before having my 2nd child on a FET. In my case, I do believe it was immune-related & I did very aggressive testing & treatment before succeeding. But others have done different things or nothing at all beyond continuing to try.

I know how devastating it is to fail a DE cycle, having been there & more than once. It's surreal. But please assure her she is not a failure. Often it does seem to be just an embryo issue. Youth alone does not guarantee viable embryos. A study a while back found 50% of donor egg embryos to be abnormal & you can't tell abnormality from appearance, so please let her know this doesn't mean she will not have a family with her new dh. There is plenty of reason to hope.

Quite a few clinics do free consults, so she can always get 2nd & 3rd opinions before doing a FET, if that helps her. To the extent she's able, or if you are able to help, I think I would find some infertility boards & try to get a feel for how others with personal experience are viewing this clinic currently. Since I'm no longer in the trenches, I haven't kept up with much regarding clinics & ttc. As an "undesirable patient," though, I had some interesting experiences & I have to confess that I'm skeptical of clinics claiming high success rates while also doing right by hard(er) cases.
I've already told her to stick it out for the FET and then move on if it fails. I am hoping it works! I can't wait to have her read all of this info about statistics. Thank you!
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Toni
Toni

September 4th, 2012, 2:53 am #10

I have a serious problem with doctors who refuse to comply with the Wyden Act and list their statistics. Yes, I understand that the system is flawed BUT it is what we have to work with.

I notice that this doctor lists very high statistics but leaves out the number of cycles he is basing them on--that would be a significant piece of information.

Did your friend transfer three day 8 cell embryos or blastocysts? You mentioned 8 cell blasts, so somewhere a piece of information is lost.

Why doesn't she know how many eggs were retrieved? How many were fertilized? And how on earth could she not know how many were frozen? These are her embryos--they do not belong to the clinic. She should have these numbers.

And nobody has 100% success rates--unless they only did 4-5 cycles and they all worked.

She needs to get some answers...
She did a 5 Day transfer and some of the blastocysts were still maturing as she was getting ready for her transfer. I was in the room when the embryologist came in and told her so I thought he said 3 were good enough to freeze. She thought it was 4 and the nurse said to her on the phone it was only 1. I actually got to be with her during the transfer and I prayed SO hard it would work. Her DH just got back from being gone for almost 2 months so they are together tonight and I know they are talking about everything. Her first cycle was a bust because the donor developed a cyst. This donor she used isn't even a proven one. It was her first time donating. I just left her message with all of this info! Thanks!
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