First I just want to give a little disclaimer: I am not a doctor, and I am not familiar with most of the studies cited by the doctors. Plus I was scribbling notes really really fast, so there is always a chance I could have screwed up my notes or simply misunderstood with the doctor was trying to say. I am going to try to look up several of the studies referenced during the conference, though, because I would love to see the full statistics. If I find them I’ll post them later.

Also please note that this typed-up version of my notes is not necessarily in the order I got it all in. Some of the topics were indeed stand-alone lectures, but many of the lectures overlapped and I don’t want to be writing out the same thing three times. So I’ve grouped info together for your and my benefit. I’ve tried to reference specific doctors when I have it written down in my notes.

A little IVF History and other notes

The very first IVF was performed in 1977 with a natural cycle – no drugs. One egg was retrieved. In 1979 gonadotropins were first used to stimulate the ovaries to produce multiple eggs. Egg retrieval was done via laparoscopy. (It is now done with a slender needle through your vaginal wall, a much more minor surgery.) It was timed by the woman’s own LH surge – she tested her urine several times a day and when her LH surged she called the clinic and everyone rushed in to retrieve her eggs before she ovulated. Yikes.

Also a note I found interesting: lupron causes an initial LH surge, which is why it is started in the cycle before – if started while stimming it could cause cysts and other problems.

One of the doctors (Flisser? Kriener? I didn’t write it down.) mentioned that you can have LH micro-surges while using lupron. He talked about how they detect them and how they use antagonist drugs to prevent them.

It was pointed out during a Q and A that there is no cut and paste answers regarding which drugs/protocol to use. Each patient responds differently… one patient will respond better to protocol A, while another one responds poorly to A, and needs protocol B. Which is why after a failed cycle the doctor needs to evaluate what happened in order to decide what to do next.

Another Q + A session highlighted the different terms for someone who carries an infertile’s baby for them: a surrogate uses her own eggs and the infertile couple’s sperm. A gestational carrier uses the infertile couple’s own egg and sperm. I did not know this.

Risks of Multiples

Because the major discussion of the conference was Single Embryo Transfer, all the doctors talked about the risks associated with multiple gestations and the reason they are all working to lower the multiples rate.

First off the doctors pointed out that most high order multiples are from OI, not IVF anymore… but IVF still has a pretty high rate of triplets or more. This is an issue for many reasons.

In 1999 the over rate of triplets from IVF was 8.4%. That is a horribly high number. I think they’ve now reduced it to less than half that, but it really depends on the clinic.

A lot of the reason for the high rate of triplets was that there is a lot of pressure on the clinics to have good success rates. Especially since the CDC started tracking numbers, there’s pressure for the clinic to report high numbers and thus attract more clients. Europeans have long criticized Americans for being too aggressive. We have higher pregnancy rates (double, they said), but at the cost of much higher multiple gestations.

The risks of multiples are many. The risk of twins vs. a singleton are listed as follows (for <35 years old, with unexplained infertility): maternal mortality is x2 or x3; stay in ICU x15.5; severe prematurity x4; infant mortality x5; Cerebral Palsy x5-10; perinatal mortality x4 (x6 for triplets) (as given by Dr. Kreiner, who cited the study Senat et al 1998).

The costs can be astronomical. The cost of delivering before 30 weeks is $100,000. The cost of a 3-month stay in the ICU (for triplets this is not uncommon) could be $500,000. Per day in the hospital a singleton costs $591; twins are $996; triplets are $1715. (And all those costs are usually covered by insurance. This is the reason that many people think it would be cheaper for insurance to pay for single embryo transfers of IVF than to make the client pay, put in too many embryos because they can’t afford to do another, and then insurance gets stuck with the high hospital costs for pre-natal and post-natal care.)

It was noted that the SART (CDC) clinic stats DOES NOT report multiple gestations that were reduced either voluntarily or naturally – they ONLY report live birth rates. (So I’m thinking the number of triplets could be MUCH HIGHER than reported.) This is only just now starting to be tracked.

Embryo splitting (identical twinning) increased with blast transfers: Day-3 incidence of monozygotic twinning: 1.4%. Day-5 transfer incidence rate of monozygotic twinning: 3.1%.

Freezing Rates and what that means for Single Embryo Transfers

There was quite a bit of discussion mentioned about freezing blastocysts. It appears a lot of the clinics who were speaking were in favor of always going to blast stage, even if there were a low number of embryos retrieved. The reasoning behind this is that they believe that embryos that don’t go to blast would not be viable anyways. To them it’s allowing them to further select the right embryo to be transferred – the one that will implant and flourish.

There was also mention that clinics have been experimenting with different freezing methods, and found that vitrification (very fast freezing) gives better outcomes than slow freezing. Some clinics are now reporting the same implantation rate from frozen cycles as with fresh cycles (which has not always been the case).

What this means in the long run is that it’s more viable to transfer one blast at a time… freeze the rest… and then transfer one blast per FET cycle.

Dr. Kreiner ran some numbers comparing the two options. First with single embryo transfer. He used the number of 45% implantation rate, and the assumption that FET will have the same implant rate as the fresh cycle (which is true for his clinic, supposedly). He used a number of 100 patients. Of those 100, 45 will get pregnant the first cycle. Of the 55 remaining, 25 will get pregnant the first FET cycle, leaving 30. And of those 30, 13 will get pregnant the second FET cycle. So over three cycles (one fresh, two FET), a total of 83 patients of the original 100 will be pregnant. Compare that to 100 patients doing one fresh cycle transferring 3 embryos… the live birth rate he gave was only 56%. So in the long run you have a much higher chance of getting pregnant doing consecutive single embryo transfers, than doing three at once… and with an almost negligible chance of multiples. Of course someone in the audience brought up the emotional factor… that going through unsuccessful cycles are highly demoralizing and stressful. Which of course is always a factor.

There have been studies showing that within the good prognosis group (lots of good-looking embryos, younger than 35 years of age, no other major factors) putting back more embryos doesn’t really increase the pregnancy rate by a whole lot. The pregnancy rate is affected more by the transfer method, the endometrium, etc.

Guidelines Vs. Regulations

The ASRM guidelines for how many embryos to transfer are pretty strict as they stand now – but they are just guidelines, not rules, and they may not apply to an individual patient. At least one doctor (Grifo) spoke out very forcefully against implementing any regulations regarding how many embryos to transfer in any patient. A lot of people out there – speaking of politicians and law-makers especially – are in favor of limiting how many can be transferred in any cycle. (Just look at my insurance – there is a max of two embryos transferred, and there are no exceptions given for age or quality of embryos.) Dr. Grifo’s argument is that it’s the doctor that should be making that decision, not some aging politician who has never dealt with infertility and has no medical training to make those kinds of decisions. He said it’s very unfair to say to a 42 year old patient with 5 bad quality embryos that they can only transfer two of them – they would have almost no chance of success. (I believe I will be writing to my insurance carrier as well as whoever is in charge of insurance at the military base to explain all this in detail and ask them to reconsider those rules. It doesn’t affect ME because I am an “ideal patient.” But I don’t think it’s fair.)

Dr. Grifo also put up a slide with the pregnancy and multiples rates of his clinic and many other clinics in NY. He pointed out the fact that NYU (his clinic) has the lowest average number of embryos per transfer, with the lowest number of multiple births (it was about half the others)… but with a comparable pregnancy rate. His point was that it is highly possible to limit the number of embryos transferred, at least in good prognosis patients, give them a very good chance of success, but without the risks of triplets. And that is a major thing.

Egg Competency Testing

First in a separate discussion by Dr. Dlugi it was noted that embryos are currently graded on how they look microscopically… the embryologist looks at how many cells it has, how fragmented it is, etc. But Dr. Dlugi said that how they look on the outside may not reflect if they’re chromosomally normal or not… it’s just a “best guess.” The only real way to know if an egg is good is to look at the chromosomes.

There was a Phase I Study that he referenced. They tested eggs, embryos and blastocysts to see if they were chromosomally normal or not at each stage. What they found is that 96% of normal eggs fertilized into normal embryos. 99% of the normal embryos developed into blastocysts. 20% of the abnormal eggs went to blastocyst stage, and they were all still abnormal. What this says is that first if an egg is abnormal it’s not going to correct itself. And second, if an egg makes it to blastocyst stage it stands a much higher likelihood of being normal (most abnormal embryos do not develop to blast) – but it is not a guarantee.

There was a keynote speech on Egg Competency Testing by Dr. Geoffrey Sher. It wasn’t something that I really wanted to go to (wasn’t applicable to my situation), but it was informative.

First of all, the reason behind PGD (Preimplantation Genetic Diagnosis) is to weed out “bad” eggs. This is mostly used now on people who are known carriers of chromosomal anomalies, to make sure that the eggs they use are not at risk. But there are much bigger implications of testing eggs. Increasing the implantation rate and lower the miscarriage rate is huge. Even in natural pregnancies there is a very large miscarriage rate, and almost all of the early-term miscarriages are due to chromosomal anomalies. Basically, the egg wasn’t a “good” one. (It was pointed out several times that humans are really not very good at this reproducing thing. We have some of the worst reproduction/fertility rates of all the animals on the earth.)

FISH PGD is what is commonly used now. The problem with it is that most places only test 9 chromosomes; the most anyone can test now is 12. There are 23 chromosomes. So while PGD can be useful in some instances, it is not going to be incredibly accurate.

So what Dr. Sher is doing is looking at other ways of testing. His talk centered around the method called CGH. (If you want more in-depth explanation of this, read this; I’m not exactly well-versed in it.) The good part is that it can access all the chromosomes. The bad part is that it takes a long time to do the testing – you pretty much need more than the 5 days between egg retrieval and egg transfer in a normal cycle.

The way he’s dealing with this is to retrieve the eggs, grow them, test them, then freeze them – which as mentioned earlier, is approaching the same implantation rates with frozen transfers as with fresh ones. He also mentions that with CGH you’re only freezing the known “good” eggs. The patient then comes back in a FET cycle to get the embryos transferred – after they’ve been tested and identified as competent. This is called “Staggered IVF.” Dr. Sher’s studies are suggesting that they are getting higher implantation rates and next to no miscarriage or birth defect rates using this method of identifying and only transferring “good” eggs – about 82% implantation rate. Plus, as an added bonus, people can know the gender of their embryos before they’re even put back (same as with PGD).

It is very costly, of course, to do all this testing – but because of the high success rate and no risk of multiples (because of the high implant rate you only have to put one embryo back), it makes insurance happy. I’m not really sure how the costs would compare, personally, but Dr. Sher of course seemed very positive about it.

The study is still ongoing, and the results still need to be confirmed. But it’s something that may develop into a more mainstream practice.

Fact From Fiction: Evidence-Based Infertility

This workshop, by Dr. Alan Copperman, talked about a lot of the myths and misconceptions about infertility treatments. I really enjoyed it – I liked Dr. Copperman’s personality and the way he lectured. Lots of random notes about things.

He made a point that today’s infertility patients are arming themselves with knowledge and want to know what’s going on. He said doctors need to understand that and make sure they are fully informed and that all their questions are answered. He told us patients to write down all your questions beforehand so you don’t forget, and don’t leave until every one of them is answered!

He said BBT charts are useful to a point to know if there’s an obvious problem or not, and he certainly didn’t say they were bad things, but he cautioned anyone against relying too much on “perfect timing” rather than just having sex every other day. He also said it is not worth delaying infertility treatment to chart for 6 months, especially when you are on the older end of the spectrum.

His opinion is that the laparoscopy and hysteroscopy are not useful anymore for diagnostics. (He said correcting an obvious problem is something else entirely.)

As for complimentary medicine he said basically “why not” – it might help, there’s no real studies that have been done – but not to do it at the expense of traditional, fact-based, proven protocols.

It was reiterated again that stress isn’t a good thing – it can strain your relationship, it can make you very anxious… being calm is good for your well-being and health… but that being stressed out is not going to prevent pregnancy. He said the fact just doesn’t bear that out… think about times in history when horrible, horrible things were going on, when stress was overwhelming for everyone… and yet people were still getting pregnant. He pointed out that infertility involves a large loss of control, and that in itself can cause a lot of stress.

Some stats he cited, as to the pregnancy rate at different stages: trying naturally after 1 year of not getting pregnant: <5%; after laparoscopy to diagnose and remove minor endo: 5-10%; using clomid/IUI: 8-10%; injectable meds: 15-20%; IVF: currently around 50%; IVF with donor eggs: around 60%.

He does favor a stepwise progression (one stage to the next to the next) with unexplained infertility. He pointed out that three cycles of injects has a comparable pregnancy rate to one cycle of IVF.

Injects is not suggested for those with PCOS, because of the high risk of overstimming and thus the high risk of high order multiples.

He addressed the term “Patient-Friendly treatment” – which currently is used to refer to a shortened IVF protocol with less meds – Dr. Copperman says “patient-friendly treatment” should mean getting a baby with the least amount of stress and risks. (I think he was trying to say that if you’re using less meds and having a lower chance of getting pregnant, and having to do more cycles, it’s not going to be any less stressful.)

And finally he encouraged early referrals to RE clinics from OB/GYNs – if people go to the OB for months and months they get burnt out and then don’t want to go to someone else.

The Male Side

This keynote was called “The Team Approach” by Dr. Marc Goldstein, a Professor of Urology. Since we’re not dealing with male-factor I didn’t take down as much notes, but there are a few things worth passing on.

In men with infertility there is a 17 – 37 times higher incidence of testicular cancer, and a 30 – 100 times higher incidence of genetic abnormalities. He suggests getting checked by a urologist early on because it’s easy and because you can prevent a child from inheriting a problem if it is caught early on. Plus there is a danger of progressive damage if things aren’t caught early on.

In males with undescended testicles at birth that was corrected surgically: if one was undescended he has a 50% chance of being sub-fertile; if both were undescended he has a 90% chance of being sub-fertile.

If a man has a vericocele, his brothers and sons have a 50% chance of having one as well. (So if your husband has a brother that has had a vericocele, get him checked out!)

Almost every single testicular/sperm problem can be either corrected or bypassed by today’s medicine. (This is what I was trying to tell Den when he was all freaked out that the problem could be him.)

Azoospermia (no sperm at all) is caused either by an obstruction, or by lack of production.

And he left us with a quote: “For every complex problem there is a simple answer… and it is wrong.”

Stress and Relaxation Techniques

I did go to the workshop on relaxation, which I thought it might be interesting.

It was started off by saying that stress is not the cause of infertility. The levels of stress in the world and among infertiles is note going down – but the success rates continue to go up. A 1993 study was cited, that said the stress of infertility is comparable to the stress of going through cancer treatment.

There are some good things that come come about from infertility: it can strengthen some friendships and create new ones; it can show you how strong you are, and it can create a closer relationship with your partner. (I know it has with Den and me.)

The techniques we went over for dealing with stress:
* deep-breathing (using your diaphram, slow inhale, slow exhale)
* visualization (visualizing yourself someplace wonderful, trying to fully imagine all the sights, sounds and feelings)
* sound-awareness (becoming aware of every sound around you – not centering on any one sound, but just taking note of all the little background noises around you and letting them go)
* muscle tensing and relaxing (tensing one muscle group at a time, holding it for a few seconds, then letting it all relax and letting your stress flow out with the tenseness)

They spoke highly of support groups, not only for allowing you to deal with your emotions about infertility, but in creating friendships and support systems for other areas of your life too. (I thought about this and realized that the reason I didn’t feel I got a lot out of that in-person support group we went to was because I already have some tremendous support groups here online.)

Reflexology was mentioned, in dealing with the stress of infertility, especially around egg retreival and transfer. Same with visualization. But they were very careful to point out that the goal of the treatments is to help YOU de-stress, to help you live fully in the moment and appreciate everything you’re going through – they do NOT think that it will ultimately get you pregnant and they certainly do not want anyone thinking that they didn’t do it “right” or “enough” and that’s why they didn’t get pregnant.

Also one of the women mentioned that her yoga instructor told her to “practice yoga off the mat” – in essence to use what she learned in class and apply it to her daily life. Stress reduction and meditation techniques are not something to be used for 10 minutes and then filed away, but something to be incorporated into your way of being.

The Great Egg Donor Debate

Now this was the funny one that I had mentioned in my last post. I’ll get into the funny part after going over the data.

The general debate is whether donating eggs is something worthy of monetary compensation, or if the lure of a lot of money will tempt young women into making a decision that they will regret later on.

First of all, people are compensated for many things that could be harmful to themselves. Voluntary medical studies compensate people for taking experimental drugs or whatnot. Sperm donors have been given monetary compensation since they started many decades ago, and there has never been a big political stink about it. So why is egg donation so different?

Well, it’s said that egg donation is much riskier to the woman. The risk of OHSS, it requires minor surgery, etc. Also, the amount of compensation is a lot more than that of sperm donation. But then, that is because it’s so much more involved than masturbating for 2 minutes into a cup. It’s a large investment of time, it involves lots of injections and monitoring. Currently the medical community itself has capped the compensation at $8000. Many places give less than that.

The thing that bothers me as well as the doctor and many others is the argument that a lot of money will tempt “young women” into making bad decisions and thus the whole process needs to be regulated. That’s basically saying that young adult women (early twenties) are incapable of making an informed decision of their own… that they need to be “protected.” As a 24 year old myself I take umbrage to that. I find the whole concept very insulting. Why is it anyone else’s responsibility to make decisions for other adults? Why is there no concern about young men regretting giving their sperm away?

The crux of the matter is “informed consent.” All donors are required to give informed consent, which means they must understand exactly what they are doing, understand and be willing to assume the risks (such as OHSS and the knowledge that their eggs will be used by another couple to hopefully make a baby). As well someone needs to make sure the potential donor is competent enough to give her consent. But all of that rests on the clinic and the physician. And I do agree that there should be some kind of check in place.

Dr. Grifo went off onto a little mini-rant about regulations being imposed on doctors. He pointed out – rightfully so – that regulations always have unintended consequences. The example given was how the CDC now reports all clinic success rates. The unintended consequence of this was that clinics pushed for high rates and the indidence of multiple births skyrocketted. That is now being corrected, but it was definitely a consequence of that regulation.

Okay, so the funny part of this debate was that there were three people in the panel debating. Dr. Grifo, a younger New Zealand woman who has a background in I think law and woman’s rights, and then an older woman whom I’m not sure what background she had at all. I have no idea why that older woman was on the panel. First thing she did, when the three people were given 5 minutes to state their position and arguments on the egg donor compensation issue, was talk for 5 minutes about how horrible it is that insurance doesn’t cover infertility treatments. She was citing “studies” that I don’t know if she was just confused or making them up, but the doctor was shaking his head and saying, “Umm, no, the numbers are more like ___.” She said that she sees all these young rich couples pushing triplet baby strollers and how “these people” just don’t want to have babies the old fashioned way. (My jaw dropped open at that… how does anyone, at an infertility conference, say that people do it for FUN?!? No one goes through infertility treatments voluntarily, and no doctor would let them!) People were giving little laughs of complete disbelief behind me. The moderator tried to get her back on track asking her to please talk about egg donor compensation and she said it was related and kept rambling about how horrible it is that blah blah blah. O.O It was truly amazing how much she talked out of her ass. Later she answered a question (ha) by talking about how in europe they limit the number of embryos transferred to 2 and was reading out the phone numbers of people in europe that people can call to find out more. ?!?!?!!! (And of course Dr. Grifo was trying to bite his tongue, because he had earlier talked about how regulations and setting an inflexible limit for the number of embryos transferred is a BAD THING.) I mean, seriously, it was like this woman was on the wrong planet. She never did make any sort of connection or reference to egg donors. It was like watching a train wreck happen.

And that was my day! I think I got it all down. I knew it was going to be a huge write-up.