Sooo, IVF failed. A WWYD question (really long--sorry).

Davie813

***negativity warning*** ***child/pregnancy mentioned***

Yeah, it's 8dp5dt, and still stark white BFNs.  I think I'm going to go ahead and call this.

Honestly, I think my fertility window has just kind of closed.  Score one for basement-dwelling misogynists everywhere: I should have made marriage and children a priority when I was young!  I could always have built a career later!  Biology doesn't care about feminism!  I left it too late, and now I'm sorry!  Etc!  Etc!

However, I still have three tries at IVF covered by insurance, and even though I'm almost positive my eggs are just done, I know I'll be torturing myself forever if I don't use them.  So.

I'm not sure about two things: whether to get a second opinion with a new RE, and whether to get right back in the saddle (stirrups) or take a break and try again in April (my current clinic batches IVFs, so I'd be sitting out the February cycle).

About the RE: nothing she's done has raised red flags or given me concern.  I've been well-monitored.  The IVF protocol she used seems standard for poor responders (or olds.  I'm not really a poor responder.  Just old.)  I've responded to the IUI and IVF protocols pretty much as she predicted I would, and she's made adjustments after each cycle to tailor them to me.  Communication is pretty decent. 

I'm just wondering because I didn't do any research at all.  She's the RE I was referred to, so she obviously took my insurance, and my OB (who I think is very good) thinks very highly of her.  So why not?  The one thing that does give me pause is that her clinic doesn't post SART data.  Do you think it's worth getting another opinion from someone else?  Maybe someone who specializes in old ladies?

About the break: I'm in terrible physical health.  I weigh the same as I did the week before I delivered my daughter.  My clinic doesn't have a BMI requirement, but I'm pretty sure that if they did, they wouldn't have taken me.  Being overweight does effect egg quality, so I feel like two months to work on losing weight and making other lifestyle changes (plus just be without the stress of thinking about fertility, making the long drive to the suburbs, and shooting myself up with anything) might be beneficial.  I literally haven't just let my body alone since I got pregnant with DD.  I jumped right from breastfeeding (and taking all sorts of hormone-altering crap to do it--I had low supply) to taking all kinds of hormone-altering crap to get pregnant.  Maybe my body would appreciate a vacation, too...

The con, of course, is that on the off chance I still do have a good egg left, time is of the essence.

Anyway, if you read all the way through this, well done!  I'm grateful just for that!  Thoughts?

wvarn

I have no experience with IVF. I just wanted to offer my support to you for what ever you decide. I wish you well in what ever you decide to do. And want to add as a optimist for others, don't count yourself out this cycle yet. Your not out until you hit CD1.

kelley72

Oh, I am so sorry you believe the stark white.. damnit.   On to subject at hand, I have no experience with IVF/ RE's etc, but I think it sounds like you have a few months before you have to decide.  I don't believe that taking a break for three months will harm your chances and it very well may improve your mental state if not the physical. 

 I am so sorry for the results with this cycle and wish you well for whatever you decide.  

sonpetitlapin

@Davie813 I do not know anything about the IVF process.  Is there still a possibility?  I am so sorry.  You have a lot going through your mind right now not to mention emotions.  Maybe take the first step.  You won't be able to go another round until February anyways right? Give yourself a month of NOT think about it.  Not worrying about it and revisit it a month from today. Enjoy your holidays with your family and allow the emotion to settle where you can think with a more clear and rational mind?  HUGS

vh2014

First- don't blame yourself.  I know it's hard not to (I still blame myself but people should remind you not to, so I am) You can't change the past.  It's done... the only influence you have is on your future. Since you've established you want to go forward,  I guess the question becomes are you ok with starting over with a new RE?  I think if you are comfortable with the RE you have I'd have a hard time starting over.  But if your gut tells you something isn't right follow it. 

I know... not much help.  I do wish I'd followed my gut on my OBGYN though.  As I've thought about the last year or so so many red flags... and my gut knew. 

susykat77

If your insurance covers a second RE opinion then it can't hurt BUT they may tell you what you already mentioned about the BMI. With that being said, take the time off and focus on getting yourself healthy. It sounds like the mental break might be just what the doctor ordered! ((((((hugs)))))

Davie813

Thanks, all.  @vh2014, I'm not actually blaming myself.  Having started earlier would mean not having the DH and DD I do have, and I wouldn't trade either of them for anything!  I just hate the way a lot of people talk about age and fertility--and that I'm proving them right!  My gut isn't telling me anything in particular about the RE, I just want to be sure I haven't closed off any options...

@Kelley72 and @sonpetitlapin, If I do a retrieval and transfer in Febuary, I'll need to start prepping with BCPs in January.  So not actually that much of a break...

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kelley72

ok, I hope this works.  Once upon a time when I dreamed of attempting assistance with an RE I contacted a clinic in the Atlanta area... anyway I just received a newsletter re SART statistics.  I read it and found it interesting, perhaps your RE not having those stats available is unhappy with the way things are reported?  just a thought

sorry so long!

SART Statistics and Patient Perceptions

Written by: Daniel B. Shapiro M.D.

Each year the Society for Assisted Reproductive Technology (SART) publishes IVF statistics for each clinic registered with the society. The IVF Clinic reporting act of 1992 requires each registered clinic to report its outcomes so that patients, the consumers of IVF services, would be able to accurately assess the quality of the work performed in each center. SART passes the compiled data sets to the CDC, which reports the live birth data on its website. The federal law went into effect in 1997 and since 2002 CDC and SART have been working together to get the data out to the public. Though there have been several attempts over the last 18 years to get independent audits performed on each clinic's data sets, neither CDC nor SART has the manpower to complete universal audits and as a result all the data is reported on an honor system by each center.

Traditionally, the data has been reported by age bracket, type of IVF service (fresh or frozen embryo transfer) and whether or not the patient used her own eggs or donor eggs. SART collects data on multiple parameters but the 'gold standard' statistic has historically been the 'live birth rate per egg retrieval in women under 35 in a fresh cycle embryo transfer'. Spot check of the 2012 data set, which was published in January 2014 shows that this statistic ranged from a low of about 20% per cycle and a high of about 70%. In the past, SART has had a disclaimer on its website that instructs readers NOT to compare clinics by the published statistics because of differences in patient populations. This past year SART modified the disclaimer to read

"The data presented in this report should not be used for comparing clinics. Clinics may have differences in patient selection, treatment approaches, and cycle reporting practices, which may inflate or lower pregnancy rates relative to another clinic. Please discuss this with your doctor."

Keep in mind that the whole purpose of reporting the data in first place was to allow patients to see into the workings of each clinic so that they could trust what they were being told at the doctor's office. The disclaimer above acknowledges that IVF centers do NOT use a uniform standard to report outcomes and that individual centers have had the ability to use the SART reporting requirement to inflate their outcomes and create the impression that they are somehow 'better' than their competitors in the area.

How, one might ask, is this possible? The easy answer is that as of January 1, 2014, it isn't possible anymore. Prior to that however, clinics had the ability to hide cycles they didn't want to show by registering them as 'freeze all' or 'embryo banking' cycles. Take for example a very well regarded high profile IVF practice in the Northeast. In 2012 this practice recorded 4045 'initiated cycles'. This number represent the total number of IVF attempts at that clinic in 2012. Many patients try more than one cycle in a calendar year so there is no way to know how many individual patients are represented by those 4000+ cycles. There could be 4000 or there could be far fewer. Quick review of the stats page shows a per-embryo transfer pregnancy rate of about 70% in the youngest patients. This number is eye-popping and immediately creates the impression that this clinic really has IVF mojo. Maybe they do...but maybe they don't. The frozen cycle pregnancy rate for the same age group is an equally impressive 65%. Inspection of the webpage shows that 333 'fresh' cycles were reported for the under 35 group and 486 'frozen' cycles were reported for the same age group. There is no doubt that these numbers are true. True but VERY misleading. If one counts the total number of cycles performed for each age group fresh and frozen, and then adds them up the total cycle number is 1876. The total number of cycles performed with donor eggs is 217. If one subtracts the donor cycles from the total initiated cycles (4045-217) one is left with 3828 cycles performed for patients with their own eggs. BUT THE DATA TABS ONLY REPORT OUTCOMES FOR 1876 CYCLES. WHERE ARE THE OTHER 1952 CYCLES COUNTED??????

The answer is that those cycles called the 'cycle gap number' were 'freeze all' cycles where the patient intended to do genetic screening of the embryos. This practice has the ability to do rapid turnaround (over night) genetic testing of embryos so that patients can get a fresh transfer on the morning of day six after a day 5 genetic biopsy. Patients who have a high response AND are found to have a genetically normal embryo are allowed to go forward with transfer. Patients who have less favorable outcomes have all their embryos frozen or simply do not get a transfer. Patients who do multiple cycles, pool their embryos and then test them all at once will only get a transfer if a normal embryo is discovered. Those transfers are recorded in the frozen embryo column, which explains why there are 150 more frozen transfers than fresh. IF NO NORMAL EMBRYOS ARE FOUND, THE PATIENT WILL NOT GET A TRANSFER DESPITE DOING 2-4 EGG RETRIEVALS AND AS A RESULT OF THE FREEZING RULE, IT IS AS IF THOSE CYCLES NEVER EXISTED.

In other words, patients may pay tens of thousands of dollars for multiple cycles, get absolutely nothing and not have any of their cycles reported as failures to SART. NONE OF THEM.

If one adds the uncounted cycles back to the denominators, even if one holds back a few that were for fertility preservation (no intent to get pregnant right away) or for single gene testing, there are still about 1800 cycles to add back in. It is possible to calculate the total number of deliveries for this practice by multiplying the reported pregnancy rates times the number of cycles in each category. When that bit of math is completed there are about 950 deliveries for the practice as a whole...but the total number of cycles isn't 1876....it is OVER 3600! Put another way, patients walking into this clinic have about a 26-27% chance of each attempt resulting in a live birth. This number appears NOWHERE on the report but it is equally true and probably much more meaningful from a patient's perspective than the inflated numbers that appear on the report. Worse, there is no explanation that the data includes fresh cycles where the clinic knew before transfer that the embryos were genetically normal.

At RBA from 2009 until the present, we have operated a large frozen donor egg bank. Until 2013, there was no place to record our frozen donor egg program outcomes. Each cycle for each donor was recorded as a 'cycle start' but none of the data on ultimate outcome was recorded because SART did not have a place to put the egg recipient cycle data. Nevertheless, we were compelled to record each recipient cycle start even though there was no place to record the outcome. Put another way, we completed about 270 frozen donor egg embryo transfers in 2012 and about 56% of these cycles resulted in live birth. The SART data for that year only shows our fresh egg donor data (fewer than 10 total cycles) and frozen embryo transfers. We would have been very happy to show the data from our egg bank but we had nowhere to put the results in the SART report. The total number of unrecorded outcomes from each cycle start in donors and recipients represents over 400 cycles and created our 'cycle gap' for 2012. Certainly we did some fertility preservation cycles (about 70) and some 'freeze all' for the purpose of genetic testing (also about 70 cycles) but we made no attempt to disguise our cycles by systematically 'freezing all' and pooling embryos from our low responders in an effort to keep patients with a low prognosis from appearing in our fresh cycle statistics. As a result, our fresh cycle stats include a large number of patients with low AMH or proven low response and our outcomes reflect this impaired prognosis with a fresh cycle pregnancy rate in the youngest group of about 40%. Our frozen cycle pregnancy rate for the same age group is higher (about 50%) than our fresh cycle rate. This is NOT because frozen embryo transfer is better than fresh-it is because patients who had a better prognosis to begin with are the ones who had enough embryos to freeze. Consequently, the frozen cycle pregnancy rate shows what a good prognosis patient population can expect to achieve in our lab, mostly without genetic testing, while the fresh cycle rate comes from a mixture of patients with a good prognosis AND impaired prognosis. The patients with lower prognosis sadly do not have the same expectation of pregnancy as patients with normal ovarian reserve and the cycles derived from patients with ovarian impairment report out lower pregnancy rates as a result.

When we do the math for RBA for our total deliveries divided by our cycle starts for patients using their own eggs we see that 333 patients had live births and that there were 997 cycles performed to generate those births. That gives a composite pregnancy rate of about 33%. Put another way, patients using their own eggs at RBA in 2012 had about a 1/3 chance (overall) of having a live birth.

Ironically, our live birth data looks worse in the published report than the practice from New Jersey. The implication is that the northeast practice is somehow more proficient than we are at helping patients achieve pregnancy. The truth is somewhat different.

A spot check of other high volume practices in the Northeast, Midwest, Colorado and the West Coast shows that ALL of our practices have composite pregnancy rates between 26% and 33%. These stats apply to the other three practices in Atlanta too. These stats might appear to be somewhat different numerically but they probably aren't statistically meaningful because different practices attract different patient populations and some states mandate coverage for IVF treatment which allows patients with low prognosis to continue care with much less financial burden. In short, all the competent practices in the US are probably getting outcomes that are basically equivalent. The implication of this is that patients should 1) not use the SART data to choose where to get their fertility care 2) trust that the practice they choose is likely to be capable of providing adequate technology and 3) choose their IVF doctor based on how they are actually cared for in the IVF center.

peregrinefalconx

I'm sorry you are in this position. I don't think 40 is old, even by fertility standards. Also, I think the whole myth about being focused on your career blah blah blah is ridiculous. I wanted to get married the whole time, since I was like 3. I didn't meet the right person until later on. I didn't choose my career over a relationship. So anybody who says junk like that is just carrying on faulty thinking, IMHO.

That being said, I don't think a 2nd opinion is ever a bad idea. Nor is eating very well and exercising. Hard to get into a good routine but won't ever hurt you. Also, I do think it is too early to call it--you haven't even actually missed a period yet, right? Chin up! Give yourself that break to focus on what your body needs--some rest and a good routine!

flyliceandcoffee

I don't have any experience with this, but something I've been told in the past and wholeheartedly believe, is to never quit on a bad day. I say follow your gut, and if you feel like a new RE will help, go for it.

meredithcarole

I am sorry the there is no + for you this round. I know you are cursing the universe and feminism and luck and everything else, but try to give yourself a break. Even under the best of circumstances IVF doesn't always take. Maybe you do need to do take a break until April. Give your body a break, but also give your emotions a break. I know time is of the essence, but so is your sanity. In the meantime, get a second opinion. You'll feel better that you did. You don't necessarily have to start all over, just get the opinion and see what you think.

I am sending you light and love. (((Hugs))) to you. Have a glass of wine this evening and try to think on possitive things and the magic of the season. It doesn't take away the pain, but I hope it can be a bit of a balm for your soul.

hooligans4

Hugs to you.  

This is my opinion on all of it.  

Take the next two months to get healthy.  You can realistically loose 20lbs by then if you really try.  I lost over 30lbs this year and it is the best think I have ever done.  I was also at the weight I was when I gave birth to my son 10 years ago.  I feel so much better physically and mentally.

  

You have 3 more cycles covered by insurance (and 6 more eggs from last retrieval right) so use them.  If you are comfortable with the RE you are using stick with her.  If you start to question your care then look for another opinion.  

If it doesnt work after your next tries then reevaluate.  

Good Luck.  

kindershlitz

Oh no. Is it possible to be too soon to test? If not I'm sorry this round did not work for you.

I'm in the same secondary IF boat and I understand your feelings completely, especially when you posted about not wanting to give DD a complex awhile back.

I don't have ivf experience and I think you have been given great food for thought. I'm just getting on the RE train but if i was in your shoes I think I would give my body a break as you mentioned and in that time consult with a new RE. Then either switch or get ready for another cycle in April. A couple months shouldn't make a significant difference especially if you're getting healthier anyway. Personally I would want to use all my covered cycles for sure! Hugs to you and I hope you still have an enjoyable holiday even with all this weighing on you.

emsmama15

My opinion only --

I have no experience with IVF either.  I can't imagine the emotional and physical turmoil it causes to your body and your soul.  So, if you think you need a break, I'd take a break!  

I'd also say, if you don't have a gut feeling your RE isn't doing things right and if you trust her and have a rapport with her, I'd stick with her. 

And last, like you said, career or not, if you'd made different choices (getting married and starting earlier), you would have a different life than you have now and how happy would you be?  I know I've told this story here before, but back when I was 20 years old, I was pre-med in college.  I took a long hard look at that life and decided to do something else (nursing) because I knew I wanted kids and just didn't think being a doctor was conducive to that with all the school, residency, etc.  I ended up meeting my husband AFTER I would have been able to complete med school, residency, AND a freaking fellowship!  But I'm still happy I'm a NP and not a MD, so there you go.  Everything happens for a reason and when it's supposed to in my opinion!  

@Davie813, every time I've been pitiful about turning 40, you've commiserated with me and said you understand my frustration and that's made me feel less alone in this.  So, let me say, I totally understand your frustration and disappointment and I'm here for you, hoping that everything works out for you.  But please don't give up!  

wannabmama23

@Davie813‌ I don't have any experience but I wanted to say I hope you enjoy the holidays and with time the best way forward becomes more clear. Here's a hug in the meantime!

CML11

With my second cycle, I didn't see a + until day 9, some don't see a + until day 10-12 so you're not out just yet. Keep holding onto hope.

As previous posters have said, look into SART data. If you are out, when you have your WTF appointment, bring a list of questions with you. Ask about supplements, changes in protocol, changes in medication.

FX for you! I hope your just looking to early!

MsJazzy73

Here's hoping you are looking too early! If your Siggy is updated, I CERTAINLY wouldn't call 40 old! Especially since I'm 41! ) ) )

Knowing nothing about ivf I would say if you feel you need a break, take it! I can only imagine it would be to you and your body's benefit! 

KirstenAlecia

With no  experience with IVF i have no insight to that. 

I certainly understand your dilemma. I too have thought a couple months of attempting some wight loss would be good for me and since we are benched thats the plan.....i know i feel the stress of feeling the couple of months just making things worse.

Can your RE advise you on that?? It sucks you are going thorough this. 

I really just want to say I wish I could give you a hug right now.

vh2014

@MsJazzy73 I just realized both the two of us and our DHs are the same age and we got married this year too!

Nikolie93

I'm late to this and I have no experience with IVF but wanted to give you huge *hugs*.

All we really have is our gut feelings when it comes to the Dr's. I have found that my gut is typically very accurate. If you're questioning it, maybe go elsewhere. I'd hate to see you have regrets later on.

More *hugs*

URMySunshine77

I am thinking of you today and so sorry that you are having this difficult time. I hope it's still too early to count yourself out. 

I don't feel qualified to give IVF advice, but if you feel deeply that you need a mental and physical break for a couple of months, then I think you should do it.

Sending you love and peace during the holidays, friend. 

C_Girlie

(((Hugs)))), hoping you tested too soon. Retest 10dpo and hopefully you'll be telling us good news. Sorry I don't have any experience with ivf GOOD LUCK!!!

Davie813

Thanks, all!

8dp5dt is actually 13 dpo, for the non ivfere, so really not too early. In any case, today is CD 1. So, that's definite.

Anyway, I just wanted to clarify that I don't think 40 is too old in general. I know lots of 40 plus ladies are successful, and I hope my fellow over 40s here will be too! I do think I personally might be past it, just because it was so easy to conceive DD, and now I seem to be--beyond medical help.*** I obviously don't have any kind of endemic issue stopping me from getting pregnant, I've just aged. Sometimes I'm at peace with that and sometimes not.

Anyway, I think I will get the second opinion (not because I have any negative gut feelings about my doctor, just to cover my bases.) and I think I will take the break.

You guys are such an amazing source of support. Thanks again!

***ok, that's dramatic. But it has been a full year if trying and four attempts at ART.

Davie813

kelley72 said:

ok, I hope this works.  Once upon a time when I dreamed of attempting assistance with an RE I contacted a clinic in the Atlanta area... anyway I just received a newsletter re SART statistics.  I read it and found it interesting, perhaps your RE not having those stats available is unhappy with the way things are reported?  just a thought

sorry so long!

SART Statistics and Patient Perceptions

Written by: Daniel B. Shapiro M.D.

Each year the Society for Assisted Reproductive Technology (SART) publishes IVF statistics for each clinic registered with the society. The IVF Clinic reporting act of 1992 requires each registered clinic to report its outcomes so that patients, the consumers of IVF services, would be able to accurately assess the quality of the work performed in each center. SART passes the compiled data sets to the CDC, which reports the live birth data on its website. The federal law went into effect in 1997 and since 2002 CDC and SART have been working together to get the data out to the public. Though there have been several attempts over the last 18 years to get independent audits performed on each clinic's data sets, neither CDC nor SART has the manpower to complete universal audits and as a result all the data is reported on an honor system by each center.

Traditionally, the data has been reported by age bracket, type of IVF service (fresh or frozen embryo transfer) and whether or not the patient used her own eggs or donor eggs. SART collects data on multiple parameters but the 'gold standard' statistic has historically been the 'live birth rate per egg retrieval in women under 35 in a fresh cycle embryo transfer'. Spot check of the 2012 data set, which was published in January 2014 shows that this statistic ranged from a low of about 20% per cycle and a high of about 70%. In the past, SART has had a disclaimer on its website that instructs readers NOT to compare clinics by the published statistics because of differences in patient populations. This past year SART modified the disclaimer to read

"The data presented in this report should not be used for comparing clinics. Clinics may have differences in patient selection, treatment approaches, and cycle reporting practices, which may inflate or lower pregnancy rates relative to another clinic. Please discuss this with your doctor."

Keep in mind that the whole purpose of reporting the data in first place was to allow patients to see into the workings of each clinic so that they could trust what they were being told at the doctor's office. The disclaimer above acknowledges that IVF centers do NOT use a uniform standard to report outcomes and that individual centers have had the ability to use the SART reporting requirement to inflate their outcomes and create the impression that they are somehow 'better' than their competitors in the area.

How, one might ask, is this possible? The easy answer is that as of January 1, 2014, it isn't possible anymore. Prior to that however, clinics had the ability to hide cycles they didn't want to show by registering them as 'freeze all' or 'embryo banking' cycles. Take for example a very well regarded high profile IVF practice in the Northeast. In 2012 this practice recorded 4045 'initiated cycles'. This number represent the total number of IVF attempts at that clinic in 2012. Many patients try more than one cycle in a calendar year so there is no way to know how many individual patients are represented by those 4000+ cycles. There could be 4000 or there could be far fewer. Quick review of the stats page shows a per-embryo transfer pregnancy rate of about 70% in the youngest patients. This number is eye-popping and immediately creates the impression that this clinic really has IVF mojo. Maybe they do...but maybe they don't. The frozen cycle pregnancy rate for the same age group is an equally impressive 65%. Inspection of the webpage shows that 333 'fresh' cycles were reported for the under 35 group and 486 'frozen' cycles were reported for the same age group. There is no doubt that these numbers are true. True but VERY misleading. If one counts the total number of cycles performed for each age group fresh and frozen, and then adds them up the total cycle number is 1876. The total number of cycles performed with donor eggs is 217. If one subtracts the donor cycles from the total initiated cycles (4045-217) one is left with 3828 cycles performed for patients with their own eggs. BUT THE DATA TABS ONLY REPORT OUTCOMES FOR 1876 CYCLES. WHERE ARE THE OTHER 1952 CYCLES COUNTED??????

The answer is that those cycles called the 'cycle gap number' were 'freeze all' cycles where the patient intended to do genetic screening of the embryos. This practice has the ability to do rapid turnaround (over night) genetic testing of embryos so that patients can get a fresh transfer on the morning of day six after a day 5 genetic biopsy. Patients who have a high response AND are found to have a genetically normal embryo are allowed to go forward with transfer. Patients who have less favorable outcomes have all their embryos frozen or simply do not get a transfer. Patients who do multiple cycles, pool their embryos and then test them all at once will only get a transfer if a normal embryo is discovered. Those transfers are recorded in the frozen embryo column, which explains why there are 150 more frozen transfers than fresh. IF NO NORMAL EMBRYOS ARE FOUND, THE PATIENT WILL NOT GET A TRANSFER DESPITE DOING 2-4 EGG RETRIEVALS AND AS A RESULT OF THE FREEZING RULE, IT IS AS IF THOSE CYCLES NEVER EXISTED.

In other words, patients may pay tens of thousands of dollars for multiple cycles, get absolutely nothing and not have any of their cycles reported as failures to SART. NONE OF THEM.

If one adds the uncounted cycles back to the denominators, even if one holds back a few that were for fertility preservation (no intent to get pregnant right away) or for single gene testing, there are still about 1800 cycles to add back in. It is possible to calculate the total number of deliveries for this practice by multiplying the reported pregnancy rates times the number of cycles in each category. When that bit of math is completed there are about 950 deliveries for the practice as a whole...but the total number of cycles isn't 1876....it is OVER 3600! Put another way, patients walking into this clinic have about a 26-27% chance of each attempt resulting in a live birth. This number appears NOWHERE on the report but it is equally true and probably much more meaningful from a patient's perspective than the inflated numbers that appear on the report. Worse, there is no explanation that the data includes fresh cycles where the clinic knew before transfer that the embryos were genetically normal.

At RBA from 2009 until the present, we have operated a large frozen donor egg bank. Until 2013, there was no place to record our frozen donor egg program outcomes. Each cycle for each donor was recorded as a 'cycle start' but none of the data on ultimate outcome was recorded because SART did not have a place to put the egg recipient cycle data. Nevertheless, we were compelled to record each recipient cycle start even though there was no place to record the outcome. Put another way, we completed about 270 frozen donor egg embryo transfers in 2012 and about 56% of these cycles resulted in live birth. The SART data for that year only shows our fresh egg donor data (fewer than 10 total cycles) and frozen embryo transfers. We would have been very happy to show the data from our egg bank but we had nowhere to put the results in the SART report. The total number of unrecorded outcomes from each cycle start in donors and recipients represents over 400 cycles and created our 'cycle gap' for 2012. Certainly we did some fertility preservation cycles (about 70) and some 'freeze all' for the purpose of genetic testing (also about 70 cycles) but we made no attempt to disguise our cycles by systematically 'freezing all' and pooling embryos from our low responders in an effort to keep patients with a low prognosis from appearing in our fresh cycle statistics. As a result, our fresh cycle stats include a large number of patients with low AMH or proven low response and our outcomes reflect this impaired prognosis with a fresh cycle pregnancy rate in the youngest group of about 40%. Our frozen cycle pregnancy rate for the same age group is higher (about 50%) than our fresh cycle rate. This is NOT because frozen embryo transfer is better than fresh-it is because patients who had a better prognosis to begin with are the ones who had enough embryos to freeze. Consequently, the frozen cycle pregnancy rate shows what a good prognosis patient population can expect to achieve in our lab, mostly without genetic testing, while the fresh cycle rate comes from a mixture of patients with a good prognosis AND impaired prognosis. The patients with lower prognosis sadly do not have the same expectation of pregnancy as patients with normal ovarian reserve and the cycles derived from patients with ovarian impairment report out lower pregnancy rates as a result.

When we do the math for RBA for our total deliveries divided by our cycle starts for patients using their own eggs we see that 333 patients had live births and that there were 997 cycles performed to generate those births. That gives a composite pregnancy rate of about 33%. Put another way, patients using their own eggs at RBA in 2012 had about a 1/3 chance (overall) of having a live birth.

Ironically, our live birth data looks worse in the published report than the practice from New Jersey. The implication is that the northeast practice is somehow more proficient than we are at helping patients achieve pregnancy. The truth is somewhat different.

A spot check of other high volume practices in the Northeast, Midwest, Colorado and the West Coast shows that ALL of our practices have composite pregnancy rates between 26% and 33%. These stats apply to the other three practices in Atlanta too. These stats might appear to be somewhat different numerically but they probably aren't statistically meaningful because different practices attract different patient populations and some states mandate coverage for IVF treatment which allows patients with low prognosis to continue care with much less financial burden. In short, all the competent practices in the US are probably getting outcomes that are basically equivalent. The implication of this is that patients should 1) not use the SART data to choose where to get their fertility care 2) trust that the practice they choose is likely to be capable of providing adequate technology and 3) choose their IVF doctor based on how they are actually cared for in the IVF center.

Thanks, @Kelley72! This is awesome!

Davie813

kelley72 said:

ok, I hope this works.  Once upon a time when I dreamed of attempting assistance with an RE I contacted a clinic in the Atlanta area... anyway I just received a newsletter re SART statistics.  I read it and found it interesting, perhaps your RE not having those stats available is unhappy with the way things are reported?  just a thought

sorry so long!

SART Statistics and Patient Perceptions

Written by: Daniel B. Shapiro M.D.

Each year the Society for Assisted Reproductive Technology (SART) publishes IVF statistics for each clinic registered with the society. The IVF Clinic reporting act of 1992 requires each registered clinic to report its outcomes so that patients, the consumers of IVF services, would be able to accurately assess the quality of the work performed in each center. SART passes the compiled data sets to the CDC, which reports the live birth data on its website. The federal law went into effect in 1997 and since 2002 CDC and SART have been working together to get the data out to the public. Though there have been several attempts over the last 18 years to get independent audits performed on each clinic's data sets, neither CDC nor SART has the manpower to complete universal audits and as a result all the data is reported on an honor system by each center.

Traditionally, the data has been reported by age bracket, type of IVF service (fresh or frozen embryo transfer) and whether or not the patient used her own eggs or donor eggs. SART collects data on multiple parameters but the 'gold standard' statistic has historically been the 'live birth rate per egg retrieval in women under 35 in a fresh cycle embryo transfer'. Spot check of the 2012 data set, which was published in January 2014 shows that this statistic ranged from a low of about 20% per cycle and a high of about 70%. In the past, SART has had a disclaimer on its website that instructs readers NOT to compare clinics by the published statistics because of differences in patient populations. This past year SART modified the disclaimer to read

"The data presented in this report should not be used for comparing clinics. Clinics may have differences in patient selection, treatment approaches, and cycle reporting practices, which may inflate or lower pregnancy rates relative to another clinic. Please discuss this with your doctor."

Keep in mind that the whole purpose of reporting the data in first place was to allow patients to see into the workings of each clinic so that they could trust what they were being told at the doctor's office. The disclaimer above acknowledges that IVF centers do NOT use a uniform standard to report outcomes and that individual centers have had the ability to use the SART reporting requirement to inflate their outcomes and create the impression that they are somehow 'better' than their competitors in the area.

How, one might ask, is this possible? The easy answer is that as of January 1, 2014, it isn't possible anymore. Prior to that however, clinics had the ability to hide cycles they didn't want to show by registering them as 'freeze all' or 'embryo banking' cycles. Take for example a very well regarded high profile IVF practice in the Northeast. In 2012 this practice recorded 4045 'initiated cycles'. This number represent the total number of IVF attempts at that clinic in 2012. Many patients try more than one cycle in a calendar year so there is no way to know how many individual patients are represented by those 4000+ cycles. There could be 4000 or there could be far fewer. Quick review of the stats page shows a per-embryo transfer pregnancy rate of about 70% in the youngest patients. This number is eye-popping and immediately creates the impression that this clinic really has IVF mojo. Maybe they do...but maybe they don't. The frozen cycle pregnancy rate for the same age group is an equally impressive 65%. Inspection of the webpage shows that 333 'fresh' cycles were reported for the under 35 group and 486 'frozen' cycles were reported for the same age group. There is no doubt that these numbers are true. True but VERY misleading. If one counts the total number of cycles performed for each age group fresh and frozen, and then adds them up the total cycle number is 1876. The total number of cycles performed with donor eggs is 217. If one subtracts the donor cycles from the total initiated cycles (4045-217) one is left with 3828 cycles performed for patients with their own eggs. BUT THE DATA TABS ONLY REPORT OUTCOMES FOR 1876 CYCLES. WHERE ARE THE OTHER 1952 CYCLES COUNTED??????

The answer is that those cycles called the 'cycle gap number' were 'freeze all' cycles where the patient intended to do genetic screening of the embryos. This practice has the ability to do rapid turnaround (over night) genetic testing of embryos so that patients can get a fresh transfer on the morning of day six after a day 5 genetic biopsy. Patients who have a high response AND are found to have a genetically normal embryo are allowed to go forward with transfer. Patients who have less favorable outcomes have all their embryos frozen or simply do not get a transfer. Patients who do multiple cycles, pool their embryos and then test them all at once will only get a transfer if a normal embryo is discovered. Those transfers are recorded in the frozen embryo column, which explains why there are 150 more frozen transfers than fresh. IF NO NORMAL EMBRYOS ARE FOUND, THE PATIENT WILL NOT GET A TRANSFER DESPITE DOING 2-4 EGG RETRIEVALS AND AS A RESULT OF THE FREEZING RULE, IT IS AS IF THOSE CYCLES NEVER EXISTED.

In other words, patients may pay tens of thousands of dollars for multiple cycles, get absolutely nothing and not have any of their cycles reported as failures to SART. NONE OF THEM.

If one adds the uncounted cycles back to the denominators, even if one holds back a few that were for fertility preservation (no intent to get pregnant right away) or for single gene testing, there are still about 1800 cycles to add back in. It is possible to calculate the total number of deliveries for this practice by multiplying the reported pregnancy rates times the number of cycles in each category. When that bit of math is completed there are about 950 deliveries for the practice as a whole...but the total number of cycles isn't 1876....it is OVER 3600! Put another way, patients walking into this clinic have about a 26-27% chance of each attempt resulting in a live birth. This number appears NOWHERE on the report but it is equally true and probably much more meaningful from a patient's perspective than the inflated numbers that appear on the report. Worse, there is no explanation that the data includes fresh cycles where the clinic knew before transfer that the embryos were genetically normal.

At RBA from 2009 until the present, we have operated a large frozen donor egg bank. Until 2013, there was no place to record our frozen donor egg program outcomes. Each cycle for each donor was recorded as a 'cycle start' but none of the data on ultimate outcome was recorded because SART did not have a place to put the egg recipient cycle data. Nevertheless, we were compelled to record each recipient cycle start even though there was no place to record the outcome. Put another way, we completed about 270 frozen donor egg embryo transfers in 2012 and about 56% of these cycles resulted in live birth. The SART data for that year only shows our fresh egg donor data (fewer than 10 total cycles) and frozen embryo transfers. We would have been very happy to show the data from our egg bank but we had nowhere to put the results in the SART report. The total number of unrecorded outcomes from each cycle start in donors and recipients represents over 400 cycles and created our 'cycle gap' for 2012. Certainly we did some fertility preservation cycles (about 70) and some 'freeze all' for the purpose of genetic testing (also about 70 cycles) but we made no attempt to disguise our cycles by systematically 'freezing all' and pooling embryos from our low responders in an effort to keep patients with a low prognosis from appearing in our fresh cycle statistics. As a result, our fresh cycle stats include a large number of patients with low AMH or proven low response and our outcomes reflect this impaired prognosis with a fresh cycle pregnancy rate in the youngest group of about 40%. Our frozen cycle pregnancy rate for the same age group is higher (about 50%) than our fresh cycle rate. This is NOT because frozen embryo transfer is better than fresh-it is because patients who had a better prognosis to begin with are the ones who had enough embryos to freeze. Consequently, the frozen cycle pregnancy rate shows what a good prognosis patient population can expect to achieve in our lab, mostly without genetic testing, while the fresh cycle rate comes from a mixture of patients with a good prognosis AND impaired prognosis. The patients with lower prognosis sadly do not have the same expectation of pregnancy as patients with normal ovarian reserve and the cycles derived from patients with ovarian impairment report out lower pregnancy rates as a result.

When we do the math for RBA for our total deliveries divided by our cycle starts for patients using their own eggs we see that 333 patients had live births and that there were 997 cycles performed to generate those births. That gives a composite pregnancy rate of about 33%. Put another way, patients using their own eggs at RBA in 2012 had about a 1/3 chance (overall) of having a live birth.

Ironically, our live birth data looks worse in the published report than the practice from New Jersey. The implication is that the northeast practice is somehow more proficient than we are at helping patients achieve pregnancy. The truth is somewhat different.

A spot check of other high volume practices in the Northeast, Midwest, Colorado and the West Coast shows that ALL of our practices have composite pregnancy rates between 26% and 33%. These stats apply to the other three practices in Atlanta too. These stats might appear to be somewhat different numerically but they probably aren't statistically meaningful because different practices attract different patient populations and some states mandate coverage for IVF treatment which allows patients with low prognosis to continue care with much less financial burden. In short, all the competent practices in the US are probably getting outcomes that are basically equivalent. The implication of this is that patients should 1) not use the SART data to choose where to get their fertility care 2) trust that the practice they choose is likely to be capable of providing adequate technology and 3) choose their IVF doctor based on how they are actually cared for in the IVF center.

Thanks, @Kelley72! This is awesome!

mrsdoodlebug

@Davie813‌ hi I'm a lurker over here but about to turn 40 and just had a failed IVF cycle. Did you test the embryos first? I only had two blasts that looked great and both were abnormal with PGD testing so it was a bust. Just wanted to say hang in there. I had an easy quick pregnancy at 35 and started trying again at 38 and my fertility has just declined. I often wish I had done all of this sooner. My only diagnosis is being older and having DOR.

CML11

@Davie813‌ my heart goes out to you, I was really hoping that you were going to pull through with a BFP. I'm sorry! Maybe taking a break while you research your options is a good idea.
((Hugs))

jnissa

***warning - child mentioned***

I'm sorry your IVF didn't work out this time - but I think you may just be swept up in the negativity of the moment. Most people who get a successful IVF pregnancy have done multiple rounds of IVF, so it would be a mistake to get this discouraged after one round. Especially since your FSH range is actually quite good for a 40 year old. I was 39 with an FSH of 15 on day three and had a successful IVF. You're not beyond medical help - you may just have to try much harder. Keep the chin up! 

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Mrs.McIrish

A few things and warning that I am blunt/don't sugar coat:


IVF statistics for women 40+ are notoriously low. They just are. The 2012 national statistics for a live birth through IVF for 38-40 is just 22.2%. If you are DOR, it goes down to 17.3. Also the next age bracket is 41-42-- live birth for that with DOR is just 10.5%. You are probably closer to 41 than 38 so the 38-40 age bracket over estimates your success rate. One IVF is simply not enough to make a sweeping statement of "my eggs are bad". At 40, it's a numbers game. You need a lot of eggs to find a healthy one. That's why it's so hard with DOR: you just don't get enough eggs with IVF to find a good one a lot of the times. A friend of mine at 41 is pregnant now (#2, no issues with her DD at 34). It took 5 IVFs to find one CGH tested normal embryo. She averaged 15-20 eggs retrieved per cycle--clearly not DOR-- yet the eggs were bad. But she's 15 weeks now with a normal embryo but it took like 100 eggs to find it.

You will never know where you fall on the spectrum but one IVF doesn't give you enough info. Since you have insurance coverage, you "should" use them even if it's for "closure" so you know. I would get a second opinion-- not reporting to sART is worrisome. The article that Kelley posted is from my RE. I trust him implicitly as he's the only one who got me my babies of 5 REs I went to. I agree manipulation of stats takes place but not all REs are as good--labs are better at diff clinics etc. I also don't like any clinic that does IVF in batches-- that is for their convenience and not for the best results of a patient.

just my 2cents:-)

dukegirlsc

@Davie813‌ I'm sorry this cycle didn't work for you and I really hope that your break and possible 2nd opinion help! I believe you still have time and options and being mentally and physically in the right place will make a big difference!