Endometriosis Foundation of America
Endometriosis 2013 / Panel Discussion - Q & A
Jamie Grifo, MD: That happens in the freezer. There is very little degradation. The current thinking is that it is what happens at freezing and thawing not what happens during the length of time that something is frozen.
From egg freezing our oldest pregnancy from time of freezing to thawing is six years but that is because we have only been doing it, clinically, about seven. Hopefully that number will change but there is not a huge literature on that.
Avner Hershlag, MD: This is a very common question that we get from patients. They are really nervous when the embryos and now eggs are frozen for a while. As Jamie said you know eggs, it is a new field, but there is no reason to think it is going to be different. Freezing is done in liquid nitrogen. It is thought that life is suspended in a... So what happens is actually once you drop it into liquid nitrogen, as long as the liquid nitrogen fluid level is above what you are freezing, it is going to stay there until you take it out and you thaw it out. With embryos we now, with vitrification, call it warming.
Lone Hummelshøj: This is also being broadcast live on Endofound's website and there are people asking questions online, so I will get a signal from down the back whenever we have questions that we might be taking from anywhere in the world actually. But let us take this one first, thank you.
Audience Member: Good morning, thank you to the panel. My name is...a physician and a family member of an endometriosis patient. My question is maybe to the entire panel. The focus of the panel seems to be on fertility considerations in the endometriosis patient. But maybe I want to flip that around a bit and ask about endometriosis considerations in the infertility patient, specifically moving a little bit beyond just the pregnancy options themselves and asking what are the impacts on the course of the endometriosis itself when patients go through the types of treatments, particularly the hormonal efforts stimulation that occur for IVF? Is it safe in the three, five, seven year horizon post treatment?
Tamer Seckin, MD: Well, I thought I was not going to get this question but now I have. Dr. Hershlag kind of bounced it to me.
I do not really treat infertility patients, I do not stimulate them. But my policy in my practice is I do not hold estrogen after I treat patients or after they have definitive therapy even hysterectomy, BSO. I give them an option to take their estrogen because I consider most of the disease is treated. But as far as being exposed during fertility treatments, the stimulation aspect, I would really like one of the fertility doctors to address this.
Jamie Grifo, MD: Another example where in order to do the right study it is not really possible because you do not know the natural history of the disease in individual patients. If you treat half of her with fertility drugs and half of her without, then you could answer the question. It is not answerable. I guess the way we handle it is you just inform patients. It may make your disease progress worse and you take the unknown risk for the known risk of never having a child. You have to balance the risks and benefits of those two things and make decisions.
Personally, in my experience, it does not appear that if it does alter the disease course it is not in a fantastically, dramatic way, if at all. I do not think it has much of an impact at all. It is a very short course. It is two weeks' treatment. The benefits of pregnancy are well documented and if that is the outcome you are probably in many cases doing more good than harm. It is a decision that an endometriosis patient has to make whether or not to elect treatment. Not having the data that we would all like to have to do that.
Victor Gomel, MD: Can I add something to that? You see sometimes there are patients who come and they have quite severe endometriosis. You give them the option to have IVF. In those patients if you used ovarian suppression with antagonists then you would have a few weeks actually of that treatment which will suppress the disease. Actually you would have an improvement, if you like, in the disease and then you do the stimulation. You have a lot of success in those patients with relatively severe endometriosis in whom you are treating their infertility with IVF. In those cases you get both benefit and stimulation. You give them a baby.
Avner Hershlag, MD: I want to say two things. Number one, this holds true, especially for women who have lived with endometriosis and pain and it is pretty much constant and a part of their life, is that pregnancy puts everything on hold for many of them. So many endometriosis patients, first of all when we help them get pregnant, will now have a pause in their painful lives, which would be very significant. That is achievement number one.
The other thing is, and I am glad this question arose; I do have that in a lecture I am giving on Monday. There is a little bit of literature of studies that they did on how patients, endometriosis patients, are after fertility treatment. And, in fact, there is more improvement, something like 22 percent or 23 percent, I have it on a slide, that have seen improvement in symptoms versus about maybe 11 percent have seen their symptoms worsen a little bit. It looks like we are not harming the disease. That is a very important question because it is estrogen dependent in some ways.
Jamie Grifo, MD: One other study that is relevant here is, and it was published in the 1990s, that as long as ovarian reserve was normal pregnancy rates did not matter regarding stage. Stage four, stage one, stage two, stage three had similar pregnancy rates with IVF. Extended disease did not change outcome. With good ovarian reserve one can expect very good outcome.
Lone Hummelshøj: Can I just make a comment to women with endometriosis? Before you embark on any treatment prepare a list of questions. Discuss the pros and the cons with your physician so that you are able to make an informed decision about whether that treatment is perhaps good for you or might harm things that you want to achieve later on. Have that very open dialogue with your doctor. I just wanted to emphasize that as well.
I have got a number of people, I have got you on my radar, we can start here.
Audience Member: Thank you doctors. My name is Julie Bragg. I am an endometriosis patient. I have stage four and I am also a founder of EndoConnect a support group in Connecticut. I guess just a comment, first another question. I am that woman who thought for a very long time about preserving my fertility. I was first diagnosed in 2008 and had my first conversation about my concerns about fertility with my doctor at that point. It is very important to me to be an informed patient and an informed consumer of information. As I was going through my treatment I had two surgeries between 2008 and 2010 that was about the same time that vitrification started being used. I became more comfortable with the idea in 2011 at the age of 32. I went through two rounds of cryopreservation. That was about a year and a half after my most recent surgery and I felt pretty well for about a year. I went through two rounds of stimulation and treatment so I am a subject, I am a test study of one but for me I definitely think that it was worth it for me. I have 18 frozen eggs and two frozen embryos.
My question is I have thought about possibly going through another cycle. I have been told that 18 frozen eggs is really a good number. Would it be advisable to consider going through another cycle, as I am still single and still putting motherhood on hold.
Jamie Grifo, MD: Clearly the most benefit was from the first cycle in terms if you look at patients who do this, the additional incremental increase with increased cycles is not as much. No one can look at either the way your eggs look like or the way you stimulated it or even your FSH and AMH values and predict what your success is. And while we are doing some research to see if we can test the egg before we freeze it, it does not look like there is going to be a very reliable predictor of your chance of success. Your chance is what your chance is. You are 100 percent you are zero percent, you are not "a" percent. The fact that you did two cycles one would estimate from the data that we have that gives you about a 60+ percent chance of being successful with those eggs.
So then the question of should, which is a word I never like to use as a doctor because there are no "shoulds", there are just choices that you make or you do not make. You really need to own those choices. You can feel pretty good about what you have done to preserve your fertility, and yes, you could always do more. So then you have to ask yourself is it worth the time, the energy and the money for that added increment which is not measureable then you have to make the right decision for you. No doctor should make it for you because we are not smart enough, and we are pretty smart.
Avner Hershlag, MD: I usually, and I do not know what number Jamie gives his patients, I usually tell my patients when we freeze eggs that I would like - the number that stuck in my mind is 20. I think that statistics are going to change over the years as the success is going to increase. Someone has to develop an algorithm based on patient's age when the eggs are frozen and the number recommended. The number recommended should not be the same for a 28-year-old and a 38-year-old. I do have to say though as a Jew that number 18 is a good number. For those of you in the audience it means "chai", which means alive, so it is good karma.
Lone Hummelshøj: Thank you. We have a comment from Dr. Sinervo.
Ken Sinervo, MD: Originally Dr. Knopman said size does matter when it comes to endometriomas. I was wondering what your opinion is in terms of what that cut off size is for endometriomas. Some say it is 3 cm, some say it is 5 cm, in terms of suggesting surgery in those patients. The other thing was following AMH values is there a time to which that AMH level may be suppressed after surgery? That it improves over say, six months or a year?
Avner Hershlag, MD: I can say one thing about endometriomas, again, it is part of what I am presenting on Monday, which is much more than fertility factors and on endometriosis, is that studies on resecting endometriomas before going through IVF have really not shown benefit. The only thing that is really correlating to IVF success is deep disease. So when Jamie was saying all stages having similar pregnancy rates it is true but there is a "but" there. And the "but" is when there is invasive disease it reduces pregnancy rates and surgical treatment of that may actually help. That is number one. I do not have any data about AMH around surgery time. Do you have any?
Tamer Seckin, MD: No, but I would like to just interject my thoughts on does size matter. I think size does matter when the patient is symptomatic. Perhaps size does not matter when the patient is not symptomatic. Because if the patient is symptomatic with an endometrioma that patient's pelvis is gone all the way, you do not know where the endometrioma implants are, from the diaphragm, everywhere. The period that this patient experiences pain with an endometrioma for me, as a surgeon, if it is 3 cm it is probably worse than an endometrioma that is 10 cm with no symptoms. So that means that cyst is ruptured. The cyst has disappeared and that patient continues to have worsening symptoms.
The second thing is a Demerol study that Dr. Hershlag was referring really endometrioma whether before surgery happens or not but if one really looks at that study you cannot tell how they really controlled bleeding in those ovaries. Many times they burn the tissue and I have a problem with that. You cannot burn tissue for hemostatic purposes. There are technical issues with surgery as I discussed in my talks. I typically do not use any...at all on the ovary. I stitch even where the bleeding is and I would construct. That is the way I think is correct.
Jamie Grifo, MD: It is also important to consider the individual patient in your question. If someone has never been operated on and has what has been called a 5 cm endometrioma they probably need a diagnosis. That is someone you would be more likely to operate on, even a 3 cm one. For someone who has recurrent endometriosis, as far as treating fertility, you do not necessarily have to operate on a patient before doing assisted reproduction. We get very good results on that in that manner.
Lone Hummelshøj: So we have two questions over here.
Audience Member: My name is Halsey Ramon. I am just curious to know is there any correlation between egg quality and endometriosis? I was diagnosed - I had a slight endometrioma on my ovary prior to my first IVF cycle, I have since done four and we are waiting for the results for the Petri testing on all our frozen embryos. Have there been any studies on that correlation?
Avner Hershlag, MD: Yes, first of all I wish you success in this cycle. You have been through a lot and this is so - I really admire women like you who persist and do not give up, keep fighting and I would say, you know, hats off. That is number one. The most important thing is to continue in consultation with your doctor so you do not do things that do not make sense, but definitely fight for that baby. We are right with you, that is why we are here.
Regarding the egg, it seems like there is one good piece of information and that is from egg donation studies. There was a very nice study done out in Spain, again I am covering it on Monday, where it seems that in endometriosis there is an egg issue. It seems that if you have to choose between the egg and the uterus, which is the endometrium, the lining in the uterus, the chosen culprit here is the egg. When you use donor eggs from a donor who does not have endometriosis into a recipient who has endometriosis the pregnancy rate is as good as it is with egg donation of any diagnosis.
When you do the opposite and you actually use an egg donation from a donor who has endometriosis into a recipient who does not the pregnancy rate is lower. So you are looking at something that maybe was not done as an experiment, but ended up as one, you have your answer there. That does not mean, because I am speaking to you as a patient with endometriosis and to others, that your eggs are shot and you definitely have to go the donor egg route. Every person has to make their own calculation but there is an egg problem in endometriosis.
Jamie Grifo, MD: Also, this notion of egg quality is kind of something that we create as a way to talk about something we do not really understand. We do not have good measures of egg quality. The answer to any patient's situation is can you get one good quality embryo that is chromosomally normal but not just chromosomally normal because even half of chromosomally normal embryos do not make babies. They need the program, the package of information that takes that single cell fertilized egg to a fetus to term and we do not have really good parameters for that. We hang on these terms because it gives us something to think about and hang our hope on when the reality is the question gets answered by one good embryo that looks good, is good and is chromosomally normal. The more chances you give yourself to get that one good embryo the better the chance you are going to be the one that has the success.
Audience Member: Hi, my name is Tamara Skeeter. I kind of wish in a sense that the second portion of our program was kind of before this portion. I am currently 35, almost 36 years old. I was diagnosed with endometriosis in 2000. I was only 23 years old. I am still single, still no prospective for a husband and thus, unfortunately for my parents, I am still not having a child anytime soon. As I am getting older based on all the information obviously it is going to be harder. For the past 12/13 years I have been dealing with the quality of life issue with staying on different types of hormone drugs just to kind of get by, which has not really helped me even as far as dating is concerned. How does that really work, here I am almost 36 year old, I still want my own child. When am I going to get...
Lone Hummelshoj: Thank you for that question. Who would like to volunteer on the panel to answer this?
Avner Hershlag, MD: I want to come and give you a hug. Tamara I think you are a beautiful woman and I think that guys should be vying for you, endometriosis or not. I think that part of it is very hard. First of all I think you need a compassionate doctor to sit down with and discuss this further. Obviously this is a forum, it may turn into a support group, but still this is like you know you have a lot of personal issues that need to be addressed. As we said you are in a neighborhood where single women are in excess of men. The over 200,000 women as I showed on the slide that are single do not all have endometriosis. They are single because of various reasons and this is a world where women are pushing for career, etc. They do not pair that easily and they do not make it their priority and when it becomes a priority the guys are kind of already taken.
Reproductive choices, when you said you would like to have your own child, a child from your own eggs, one thing we did not discuss at all I think until now, I do not remember, we missed part of the conversation because Jamie and I were taken to an interview, is single women who end up getting pregnant with donor sperm. I just want to raise that again. This is one of the encounters that it is almost mimicking an encounter that I had in the office. It is like when you tell a woman donor eggs the head goes like this before she goes through that switch that I showed in my talk. In a very similar way for a single woman to decide on donor sperm is not an easy decision. However, single motherhood is an option and single women who choose to conceive with donor sperm usually have a successful motherhood and they can have more than one child. Again, I do not want to be personal here because obviously this is something to be discussed within the privacy of your doctor's office. But I would say this is an option that women need to consider. One of the things I want to ask Jamie, when you showed the slide of the women who did come back after egg freezing to thaw their eggs, how many of those single women had a partner by then and what percentage, do you have any idea, are doing it with donor sperm?
Jamie Grifo, MD: Certainly not the most but a significant number, probably 15 to 20 percent, have come back for their frozen eggs without a partner, and just decided to use donor sperm. But the sample size is too small really to say. We have not been doing this long enough really to make broad generalizations. I think women just have to make decisions about how they want to conduct their reproductive lives. There are no rules. You have to decide what is right for you and you have to figure it out. There is not a lot of support out there or resources. One website, the web is a dangerous place but it is also a good place, you want to learn about egg freezing there is a website started by a patient who froze eggs, not my patient. It is basically a patient oriented website about egg freezing. You could learn more about it. You could talk to your gynecologist and have testing of ovarian reserve like AMH and day two FSH to get an assessment of where you are at on that aging curve that we keep flashing in front of you, which does not make you feel very good. Then just figure out what works for you.
While most patients when you look at all the options, I have a slide in one of my slide sets that talks about the 37 different ways you can make a baby now, depending on where the egg comes from, where the sperm comes from, who carries the pregnancy, the configuration of the "family unit" - the world has changed. You have to figure out what works for you and no one can do that for you. People can help but that is really where you start and start thinking about your options. Patients who resort to egg freezing and/or egg donation have very good outcomes. Adoption is another wonderful option that we have not really talked about. And some women, couples, individuals choose to live without a child. As awful as that sounds I have many patients who that was their outcome, and they are living happy, fulfilled lives. Of course, there is always that thing that is missing but they managed to make peace with it. That is really what you have to do, make peace with the choices that you make. But be really mindful of the choices that you make and do not just let it happen to you. Be active and then you will heal, then you will get better and will not feel like you feel this moment for the rest of your life.
Victor Gomel, MD: This is really very good advice. But I would like to add a note of how fortunate we are that we live in a society where all these choices are accepted and not really frowned upon. Much of the world would not be discussing what we are discussing today. Just think how fortunate we are.
Lone Hummelshoj: That is a very, very good point. Can we move on with some questions from the audience? We have about 15 minutes left so can I ask maybe that we keep answers a little brief so that we can answer as many questions as possible.
Audience Member: Hi, my name is Maria Wharton. I am a patient of Dr. Tamer. I had my surgery done one year from September, so it has been one year and six months. I am trying to get pregnant, which has been a little bit hard for me. Also my problem is about intercourse with my fiancé. Before my surgery in 2007, since I was diagnosed with endometriosis my intensity is not - it is very scary for me. It became worse after my surgery also. I do not know - when can I get pregnant? That is number one because I went to see my daughter and she is asked all different types of questions, and I really was not satisfied. That is my...my gynecologist which is not Dr. Tamer but I had the surgery at Dr. Tamer's because very nice...
Lone Hummelshoj: And your question is?
Maria Wharton: My question is when, after the surgery, when can you try to get pregnant after the surgery?
Lone Hummelshoj: Please, doctors. After surgery, how soon can you start trying to get pregnant after surgery?
Victor Gomel, MD: I tell them after your next period you can start.
Lone Hummelshoj: Next question, so we have got one over here, and I have got one there and one at back.
Ayse Ayhan, MD: Actually I came from Japan. I am a pathologist. It is a very good experience for me to be among clinicians and patients. We usually do not face patients. First of all I want to ask whether there is a statistical study among endometriosis patients with frozen eggs to achieve a spontaneous pregnancy.
Avner Hershlag, MD: I do not think there is a specific study on endometriosis. But judging from the results in IVF where pregnancy rates, if you look at the START statistics, the national statistic, where the endometriosis patients now have the same pregnancy rate across the age groups like all the other diagnoses, I do not expect that to be that much different with egg freezing because if the embryos are okay the egg should be okay.
Ayse Ayhan, MD: So the patient should not have any anxiety or should not have higher anxiety to not get pregnant because they may have spontaneous pregnancy as well.
Avner Hershlag, MD: Absolutely.
Ayse Ayhan MD: So, I mean...
Victor Gomel, MD: You see one of the goals of the surgery, what is the principle of surgery is to render the anatomy to its normal state.
Ayse Ayhan, MD: Yes.
Victor Gomel, MD: This is what a knowledgeable surgeon aims at to restore normal anatomy. You hope that the physiology will help. After all, it is the patient that heals herself. We do not heal, we just remove disease trying not to harm anything else while doing it.
Ayse Ayhan, MD: To go back to the...physiology. They have a high chance of getting spontaneous pregnancy after appropriate surgery. This is very important and they have to know. And they have a further chance for IVF if they do not get pregnant. So they have to make sure.
Victor Gomel, MD: Exactly. Exactly. Absolutely.
Ayse Ayhan, MD: My second question, I am sorry, do I have time?
Lone Hummelshøj: One more brief question and brief answer. I would like to get back to the women.
Ayse Ayhan, MD: I would like to discuss the size of the endometrioma in patients. Even patients without symptoms should be concerned abouot getting endometriosis related cancers. They have to be followed, they have to have information about it. It is not sufficient they have to have that information about it. I want to congratulate Dr. Seckin for his cold life surgery because I assume laser or any other armamentarium would cause the egg damage and as well the ovary and residual ova of the patients to harm their further pregnancy. That is an important issue I think. I thank you very much.
Lone Hummelshøj: Thank you very much. I think Dr. Seckin made that point earlier on. We have a question here, down the back and back over there. Again, if we could keep questions and answers brief then we can get as many in as possible.
Audience Member: This is for Dr. Knopman. You just mentioned, could you just reiterate because say if someone is in their 40s and they decide to do egg, they have endometriosis and they decide to do egg donorship because their quality of eggs are probably bad, you mentioned something about, say I have questions about implantation. Are there problems with implantation? And also say they get pregnant you said something at the end, like, previa or something, could you just reiterate that because I was trying to listen and I just want to get it again.
Dr. Jamie Knopman, MD: Sorry, I talk very fast. The first question is what Dr. Hershlag was saying, people sort of point is it the chicken or the egg? Is it the endometrium or the ovary? Although we do think it is probably primarily an ovarian issue based on donor studies, we do know that there are also endometrial problems at reduced implantation of patients who have endometriosis. I was saying in a recent study they demonstrated that there are receptors in the uterus and the endometrium that may be lacking and therefore decrease the incidence of implantation. Additionally, studies have looked at placental problems so the placenta should attach in a normal fashion. If a placenta attaches inappropriately you can get things like placenta previa, placenta accreta, etc. What that study showed was that women who have endometriosis have a higher incidence of placenta previa and placenta accreta, which both of those can lead to what we call antepartum bleeding or just basically bleeding in pregnancy. What I was trying to say is that while you do have an increased risk when you have endometriosis it is not such a global risk that if you presented to your OB or your high risk obstetrician they would put you on bed rest because you had endometriosis, it is just something that maybe one should look out for.
Lone Hummelshøj: Thank you, we have one over here and I promised one down the back, two here again. Try to keep it really brief because we do need to wrap up in about seven or eight minutes.
Audience Member: I will be very brief, thank you. My name is Abby and I was diagnosed with endometriosis about maybe two years ago or so. I am 30 and single and have been single in the dating years and if possible would like to have kids, very, very much one day. My question is what percentage of, two very brief questions that are linked, what percentage of women with endometriosis have a hard time getting pregnant and need to go through IVF. And then the other question is how much does it cost, generally, to get your eggs frozen by yourself so not, what do you call it, fertilized ones? Those are my questions.
Avner Hershlag, MD: Dear Abby.
Abby: Embryo.
Lone Hummelshøj: It sounds as though as if a lot of women need to move out of New York actually. That is a separate panel.
Avner Hershlag, MD: Right, right but do not move into a gay community. It is not going to help.
Lone Hummelshøj: That is not the solution. But could we have a brief answer on the percentages and the expense.
Avner Hershlag, MD: I do not know if anyone has - there is probably a study out there if you look. You know, a lot has to do with something called, and I apologize for using a professional word, the algorithm of treatment. This is like how fast does your individual physician move you to IVF? You are looking at, I think, at three people at this table that are probably pretty aggressive - the two Jamies and myself, in moving people because we come from the IVF world and we very much believe that this is the fastest way to get pregnant. We did a study in my center that looked at what is the mean time to pregnancy with treatment and without treatment of all patients. Without treatment about 25 percent of our patients get pregnant without treatment. That takes a year and a half mean time. And with treatment it was six months. Okay, now I think endometriosis patients are probably right within that number and in terms of moving them to IVF I prefer always the expressway than the scenic route, okay? If someone wants the scenic route and wants to have to go through multiple procedures, multiple inseminations and things that have less than a 10 percent success rate it is not going to be with me and I assume not with this Jamie and not with that Jamie.
Regarding the cost, in our center for an egg, we have two types of egg freezing. We have egg freezing very important fertility; we did not talk about it here, egg freezing fertility preservation for cancer patients. We have reduced that cost because we feel, I feel, very compassionate to those patients, in fact I make further arrangements so that these patients will not end up without freezing their eggs before going to chemotherapy. This is what we get. So for cancer patients it is $6,000. For the elective freezing it is $8,000 that is without medications. Medications depend on your insurance, so it is highly variable it could come up to a couple of thousand dollars.
Lone Hummelshøj: We have time enough for two more questions. I have one here, Sally can you really be brief please. And then we have one down here.
Audience Member: Hi, good morning. I just wanted to say we're so lucky to be having a conversation about fertility options but also being single, also living in the area, my question would be if we had cancer or a number of other diseases that affect our pelvis there is, many states have infertility laws in which insurance has to cover our freezing. However, with endometriosis you are looking at first an $8,000 to $12,000 layout for excision and then you are looking at another $8,000 to $12,000 layout for egg freezing itself. I was just wondering what the pioneers in the field that you all are, are doing to help with legislation or with anything else to make it a viable option? Because before you know it you turn around and all the options are gone.
Jamie Knopfman, MD: I would say that there is a woman, her name is Lindsay Norbach, she started Fertile Hope and a big part of that, which was bought by Livestrong, but she goes around the country lobbying for insurance companies to now make egg freezing for malignancy something that insurance will cover. She has been having a lot of success. Our hope is that if they start to cover for cancer that it will trickle down to other medical conditions and then hopefully elective. But, you know, insurance is sort of behind the times I think.
Jamie Grifo, MD: The reality is legislators listen more to patient advocacy groups than they do the physicians who demanding insurance coverage for procedures that they perform. So, probably the most effective route would be an organization like this to start pounding legislators and beating them down to get the insurance companies to cover. That has been shown to be the most effective means for this kind of thing that you are talking about.
Lone Hummelshøj: Thank you very much we have got just one...
Tamer Seckin, MD: I want to make a comment on this. From the surgical aspect obviously I hate to turn any patient back, and without making an announcement of policy, a patient comes with obstructive uropathy or serious bowel disease and cannot afford it, I do extend all the courtesy, even free surgery, to them. I have done it and one of the patients that I did is here.
Avner Hershlag, MD: I just want to say, this is very important, so I know we want to jump to the next question, but the issue of coverage at our hospital system, which is not Shoreline, LIJ and now Lenox Hill, most of our patients have insurance. They have managed to get insurance. Not too many people have to pay for endometriosis surgery as far as I know. That is number one. What advice I would give you is to get an employer that will give you the right insurance because obviously it is a big Manhattan problem that people are without insurance, number one. And number two is that they go to surgeons who do not take insurance, okay, which I have a philosophical argument with. That is number one.
Number two, regarding fertility preservation, again, this is locally what we have done with our health system, which now encompasses 16 hospitals and a lot of employees is that we have the system now covered fertility preservation for cancer patients in addition to covering IVF. So employees of the North Shore, LIJ now, Lenox Hill system have IVF covered by their institution and now also fertility preservation for cancer patients. What has not entered the picture is a very interesting group which now comes to light and that is people who want to preserve their fertility but they have endometriosis. Should you treat it in a way from an insurance point of view like a disease that is the equivalent to, the needs are equivalent to, the needs of cancer patients. Thank God that the prognosis is different.
I am definitely with you and hopefully we have representatives here of several organizations, not just the main organization that started this but also the World Organization, etc. and maybe we can do something about it.
Lone Hummelshøj: I think that is a very good note for us to finish. We just have an impromptu speaker who has arrived, Padma Lakshmi would like to address the audience for five minutes before we break for lunch. Without further ado I am going to introduce Padma, who is the co-founder with Tamer Seckin of the Endometriosis Foundation of America.
Padma Lakshmi: Good afternoon and thank you for joining us. I have been keeping track of all the discussions that have been going on through my phone. It is amazing. I am getting sort of minute by minute reports of egg freezing and infertility discussions. I am so glad that all of you are here and I hope that you will go and share everything that is discussed and gleaned from these days. We appreciate your participation and we really look forward to an ongoing exchange of ideas, not only in the medical community but also to reach out and into the general public.
I know today we were talking a lot about patients and the reason that I got involved with the EFA at Dr. Seckin's insistence and encouragement is because I became very angry at the fact that I personally was only diagnosed with endometriosis at 36.
I am a college educated woman, I have a lot of resources at my disposal that many Americans cannot even imagine having. I have health care, which is very comprehensive. I have access to the best doctors in Los Angeles or New York or London where I lived as well. And yet I too fell through the cracks. I did not fall through the cracks because I did not know something was wrong, I did fall through the cracks because I had negligent doctors. I sincerely believe that I had very well meaning, caring, intelligent doctors who gave me as good a care as they would have given their own sister or daughter or wife. But they just did not know any better.
If you look at most of the hospitals and most of the leading doctors and surgeons in this country that head departments, be they in hospitals or in academia, they are often in their 60s. Twenty years ago, 25 years ago when those doctors were starting out, I can say this because I have doctors in my family whom I love very much, there was not the research and there certainly was not the technology that there is now. And there was not the sharing of information and the modes and capability of communication that we, today, standing in this room and living in this country are privileged to have.
I encourage you to not only talk to other medical professionals, not only talk to other gynecologists but also talk to any surgeon or practitioner working in the body cavity. I was operated on by a gastro doctor who, had he known there was a bigger, underlying problem I am sure would have given me different care. I encourage you, if I could just ask everyone in this room to just repeat one important thing that you have come away with from this weekend to someone else and maybe start a discussion then Dr. Seckin and everything he and I are trying to do will have been worth it, just that little thing.
You have been talking about eggs this morning I know and I was diagnosed at 36. I got divorced at 37. At 38, almost 39, I found myself single and childless and feeling like many women feel in their 30s and even early 40s that we have squandered or "wholesold", if I can use that past tense word, some of our life or other parts of our life. There is a lot of guilt and anger I felt in myself for not taking better control of my own body and not going to that second or third gynecologist and saying, "Wait a minute why am I taking handfuls of Vicodin every month?" I should have done that but I thought that the doctors knew better. Doctors should listen to patients and patients should listen to their own bodies. Pain is your body's way of telling you something is wrong. We need to listen to our bodies and communicate with each other. We need to share information as women with each other with other women, with younger women and we need to share information with our mates.
I never liked to call our foundation a women's health foundation although clearly biologically it is an issue that affects women. I consider endometriosis a family health issue because not only does it affect that woman biologically it affects her personally. And it affects every woman that that woman loves, every woman she cares for, every person she cares for and every person that wants to care for her and loves her. It affects her professional life and of all her colleagues. It affects her emotional life and thereby it affects us all, as a culture and a society.
One in ten women has endometriosis. When I learned about my body when my mother had that talk about the birds and the bees, she said to me, my mother has a Masters in Public Health, she is a nurse, she said to me, "I had a lot of cramps [and I knew this because I saw her with the heating pad four or five days every month] and I am sure that you probably will too. Some women get it and some don't. It is just your lot in life". It is not your lot in life. It really is not. And that little seed, we have to watch what we say to our children as they are forming, as they are not only forming their bodies but their identities and their relationships to their own bodies and their self-esteem.
Imagine if my mother had not been told the same thing by her mother. Imagine if my mother said, "If this happens we're going to find out why and we are going to try and fix it as much as we possibly can so that you can go to hockey practice or dance class or math club [which I was probably not going to go to anyway but you know, whatever] and you can live the life that you should have the opportunity to live". We all are not equal but we all should have the opportunity to be equal. And that is what this conference is about among many other things.
We are very pleased to have with us someone who will speak after the lunch break. She will be speaking not only about some of the issues I talked about as well as her own professional life, but hopefully illuminate many more issues surrounding this illness after the break. Please come back.
Lone Hummelshøj: So on that note there is lunch now and if you could please be back for one o'clock then Lizzie O'Leary will be talking about her experience with endometriosis at that time.
