Early detection and diagnosis
is the best prevention
for endometriosis

AAGL Meeting 2011 - Padma Lakshmi

Speaker:  This morning’s program will focus on awareness, research, surgical treatment and novel classification of endometriosis, an often devastating disease that affects over 176 million women around the world. At one time, not so long ago, we thought endometriosis affected primarily upper middle class Caucasian women. We now realize through awareness and enhanced diagnostic abilities that endometriosis has no ethnic or social preference. It is often first discovered in adolescents suffering from dysmenorrhea as well as peri-menopausal women with an adnexol mass. It is our duty to help these patients who otherwise would suffer their entire reproductive life.

We are privileged this morning to hear and see four individuals who have made profound contributions to women suffering with endometriosis; Ms. Padma Lakshmi, Dr. Linda Griffith, Dr. Grace Janik and Dr. Mauricio Abrao. I will introduce each of them individually prior to their presentation.

Ms. Padma Lakshmi is an Emmy nominated, internationally known actress and television host. A food expert, an award winning author of two bestselling books, an entrepreneur, a super model, an activist who speaks five languages. She has graced the covers of numerous magazines and is easily one of the most recognizable faces in the world.

While flying on Jet Blue last week I saw Padma make a guest appearance on 30 Rock, where she announced to Alec Baldwin she had invented a re-sealable plastic bad that you could actually put a sandwich into and one you can actually see through. She obviously has a wonderful sense of humour.

Padma struggled with endometriosis herself for decades. After meeting our colleague, Dr. Tamer Seckin, she was successfully treated and now has a beautiful daughter as a result. As one might expect from such an accomplished individual Padma had the driving gift to give back and help others with endometriosis. She teamed up with Dr. Seckin to create the Endometriosis Foundation of America, an organization committed to enhancing the public’s awareness of this disease. Padma routinely speaks to the media, top researchers and doctors as well as to the public. In 2011 alone she and Dr. Seckin garnered over 320 million media impressions catapulting endometriosis into the spotlight. Padma has also enlisted the help of Susan Sarandon, Dr. Mehmet Oz, Fareed Zakaria, Whoopi Goldberg and many others. It is a true honour to have Padma Lakshmi accept our invitation to present at the Jordan Phillips Keynote Session. I am excited to hear her story.

Padma Lakshmi:  Good morning, I am very sorry that I could not be there in person I was really looking forward to it but unfortunately for personal reasons I had to remain in New York but I am still very, very honoured and privileged to be able to speak to all of you this morning.

My name is Padma Lakshmi and I am here on behalf of the Endometriosis Foundation of America. I am a board member and a co-founder along with Dr. Tamer Seckin. The EFA is focused on combating the devastating effects of endometriosis and all of its painful ramifications. We seek to raise awareness, we seek to educate, we seek to further promote research so that we can better understand the pathology of this disease and we also support any kind of patient advocacy and legislative advocacy that can help, including helping underprivileged women get the treatment that they need.

As an organization we believe that the gold standard for treatment of this illness is through surgery, and through resection. You are surrounded by people who are very imminent. You will hear from all of them today and they can speak to you about the science of endometriosis. They will speak to you about the technological aspects of laparoscopy as well as the technical aspects of the disease.

But today I would like to spend some time speaking to you about the human ramifications of this illness. I have stage IV endometriosis. I am a college educated professional woman and I was 36 before I was ever diagnosed. I have access to the best medical care, as well as being lucky enough to afford very good health insurance, and yet I was misdiagnosed. First undiagnosed and then misdiagnosed for decades of my life. I have always had very difficult periods. From the time I was 13 I had pain, I had back pain, I had cramps, I had headaches, I had nausea and I had gastric problems. The face you see today in front of you is mine. It is one woman, it is one story. Behind me you should image that there are 10 million women standing behind my face. So, while you see one face it is really a multitude. Ten million women and adolescent girls in this country alone suffer from endometriosis. One hundred and seventy six million suffer from it worldwide. The tragedy is it is a disease that can be treated. It is a disease that does not have to overcome your life, and yet slowly and slowly and surely it did overcome mine.

I spent 25 percent of my life having my period. My period lasted seven or eight days. From the time I was 13 I would be routinely bed ridden four or five of those days a month. I would miss family occasions, I would miss my studies or exams and I would miss sporting events. When I became a working woman I missed professional obligations due to my illness. At a very young age I was on very serious narcotic medication in order to deal with the pain. As I travelled after college I became familiar with the medical institutions of other countries and also did the drugs of other countries. What is Vicodin called in other countries? Some countries do not even let you use it anymore. What is Anaprox or Naproxen? I always knew that this would be so because my mother, who is also a nurse, and very smart and educated, told me when I was very young and talked to me about my body that I would probably suffer every month with all the symptoms that I did indeed get once I got my period. I had again back ache, mood fluctuations, swelling and bloating, severe, severe cramps, severe and excessive bleeding. I had lower back pain. I had digestive problems. I had nausea and the biggest thing that I suffered from, I would say, is just a loneliness of not understanding why I suffered from this and other women did not. I was told it was my lot in life, that maybe I was high strung, that maybe I was just delicate or had a low threshold for pain. Pain is your body’s way of telling you that something is wrong. And when you look at these eyes, you have to know that month after month as a young girl when your body fails you, you start to feel less than the woman next to you.

I went on like this for most of my adolescence; I went on like this for most of my 20s. I once started hemorrhaging in Paris when I was living there and I went to the hospital and the doctor asked me if I had missed one of my birth control pills, that that sometimes caused it but he never said the word endometriosis to me at that hospital. I moved back to the States and I went to see a gynaecologist here and he informed me that I had some ovarian cysts and he did that surgery, almost ten years ago. He said the words “blood filled”. One of my cysts was blood filled but he was going to remove it and it should be fine and that he really needed to remove it soon. But he never said the word endometriosis to me. Then I was having dinner one night in 2006 and I got very severe cramps and I was feeling very uneasy. I went home and I felt very ill and I called my internist and he said, “Just drink some mint tea” because usually that will help you with spasms and I thought, “We are way beyond mint tea here. We are in some other forest”. He could not make it to my house and finally the ambulance came and took me away. Hours later they did an emergency surgery, through laparoscopy, that was gastric but done by a gastric surgeon. And still I did not hear the word endometriosis. I heard that I have a propensity for scarring and that perhaps maybe there was some scar tissue that had looped itself around my intestines, scar tissue from when the other doctor, years before, had removed the ovarian cysts. That episode was just the tip of the iceberg.

I would encourage every doctor or surgeon who is operating in the body cavity to explore the symptoms of endometriosis, to consult their colleagues about possible misdiagnosis because it happened to me. The doctor who performed that surgery is a well-meaning, reputable, wonderful man and I fully believe that he wanted to give me the best care possible. The care he would have given his own daughter or sister or wife. He just did not know.

I partnered with Dr. Seckin in order to never have that happen again to young girls. I have a daughter now. I am lucky enough to be a mother. I do not want her or my nieces or younger members of my family to go through what I went through. I would often hide my pain. When I missed family occasions I was embarrassed and I just would not say after a while that it was my period pain and people just thought I was flaky. After that surgery the doctor told me, “You will be fine. I think that that little piece of scar tissue had wrapped around your small intestine very, very tightly because even when I snipped it off I had to massage it in order for it to spring back”. And I thought yeah I know because the cramps were so, so bad, they were just so debilitating.

I think that is the thing that is the hardest, when you have chronic pain and other symptoms it affects every part of your life. Endometriosis affects every aspect of a woman’s life. It affects her personal relationships, platonic and sexual. It affects her mood, it affects her hormones, it affects her ability to do her job and earn a living effectively. It affects her ability to be present for the members of her family and her community. And it affects her sexuality.

Endometriosis is also a disease that is very misunderstood or not understood by many, many physicians, even in the fields of gynaecology and obstetrics. As I said, I had access to all these amazing doctors and yet it took me two surgeries before I got on to Dr. Seckin. And finally I did get to him. I will never forget it. I was at a photo shoot and I started bleeding in the middle of my cycle. I did not know why. I was used to bleeding excessively during my period and having lots of pain. I was used to even having pain during ovulation for two and three days. I could literally feel the pain moving from one side of my midriff from bottom to top…I could tell and people say that is impossible, you cannot tell. And I would say, “No, I can tell”. When I started bleeding I just had my assistant go out and get me some tampons. But I did not need tampons, what I needed was medical attention. That night I called my internist and I told him what happened and he said, “Do you know I am always worried about you because you are always on a heating pad, you are taking very serious pain medication and this just shouldn’t be” and I said, “Well, I go to a gynaecologist”. He said, “I have a friend who is a specialist, why don’t you go see him”?

I will never forget the day I walked into Dr. Seckin’s office. I remember it was a morning, or a day, much like this in New York. It was fall, it was October, I had done a cooking segment very early that morning on a morning TV show. I had a big full schedule that concluded with a very swanky dinner that evening. And somewhere in there, at the end of the day, I walked into Dr. Seckin’s office. He asked me a bunch of questions which I answered to the best of my ability and then he examined me. He asked permission to do another type of exam and I said fine I had never had that kind of exam before, which I tell you is not fun, I know you guys are all medical professionals but as a patient it can be very scary. It can be very scary and very lonely even if there are people holding your hand. After he finished the exam he asked me to get dressed and said he would meet me in the office. I will never forget was texting or emailing or some thing because I always late for whatever I was doing and I asked if this was going to take long and he said, “Yeah, Ms. Lakshmi this is going to take long”. He said, “I believe you when you say you told me all you knew honestly to the questions that I asked you before examining you because you walked into my office on your own two legs. But your anatomy does not match your story. Your anatomy makes me wonder why you’re not lying down on the sidewalk in front of my office squealing in pain. Ms. Lakshmi I believe that you have been in pain so much you don’t even know it’s pain and you sublimate it, all of your pain, so that you can deal with it. But something is very, very wrong and we need to operate. We need to get rid of this illness as much as we can, we need to treat it, soon, because I don’t want to make presumptions but I am assuming you would like the option to be a mother. And Ms. Lakshmi that option is gravely in danger now”. And he said the word that made it all understandable. He said, “You have endometriosis”. He told me what is was, he told me what it did, and for the first time somebody finally put a name on all of the things that I could not explain. The incredible pain, the aches, sometimes my whole hip would just go numb. Sometimes I would be curled up in a ball and no amount of Vicodin would help. Or it would make me really nauseas and that was often just as bad. The heating pads, the hot water bottles, the handfuls of Advil. I cannot tell you what it was like. Then the collateral symptoms that all of those medicines caused. Finally somebody put a name to what was wrong. I was not high strung, I was not delicate, in fact, I have a really high threshold for pain it turned out. And I was not being over dramatic. I just had a disease that needed treatment.

And those other doctors who operated on me, who meant well and thought they were giving me the best care, just did not know either. They did not know any better, just like I did not know any better. And they should. As surgeons and professionals and scientists in your field, you have a lot of power. You have an immense capacity to change the very calibre and quality of a woman’s life. A woman like me, a woman who did not understand why her body was betraying her, a woman who did not want to miss the milestones of her life, or the family functions and events that are important to every young girl and every woman.

Endometriosis affects 176 million women a year. It is something that can be treated and that can be managed. At the EFA we believe that that should be managed preferably with surgery, if possible. We want to educate as many woman and as many health professionals as possible. Part of that is having centers of excellence so that we can educate the next generation of doctors, as well as nurses. Nurses are our first line of defence often. And they are the first ones to see young girls. Endometriosis, if caught early, can be treated. It can change the course of a girl’s life. If I had been diagnosed at 20 rather than at 36, imagine, imagine the difference in my life. Imagine how many more things I could have done, how many more events I would have been able to go to, how much money I could have made as a professional woman. All these things, how much more I could have contributed to the community in which I live.

We are at a very, very special place in medical history where we have the technology to treat the illness that we did not have a few decades ago. And you, all of you sitting in the room, can help. We had a nurses’ conference earlier this year because young girls will not go to a gynaecologist. I did not want to go to a gynaecologist. I still do not like going in spite of loving Dr. Seckin and being so thankful that I met him. But, we need to educate the lay people about the disease, we need to educate young women, we believe in legislative advocacy not even to forward research but also to change programs in medical colleges and also to change programs about sex education. Young girls should learn about the possibility of endometriosis, they are learning about the other aspects of their own sexuality and their own bodies. We seek to further research. We have also partnered with Dr. Linda Griffith, and you will hear more from her later today at M.I.T. about looking at the pathology of this illness.

What it all boils down to is the human condition. How this affects, not only the woman who has endometriosis, but her family. Dr. Seckin told me that that first surgery would be about an hour and a half he thought. Once he got in there it wound up being four and a half hours of surgery. I was bedridden for a long time after that surgery. And then I had another surgery and a third surgery. And I am happy to report that now I am not bedridden. Now I do not take handfuls of Vicodin, now I am nicer to the people around me. I am more productive. And most of all, I feel understood and I feel I have an understanding of what my body is doing and how I can help it function in a healthy manner. And that is really what this is about. This is about helping women to be healthy and productive human beings and contribute into the world that they live in. That is the best thing that we can do for our fellow human being. We can offer them the same opportunity to have a full and productive life just like the next person. When you have endometriosis you feel very, very lonely. I did not know what was wrong with me. I would swell, I would spontaneously have to run to the bathroom and throw up. I would have severe, debilitating cramps, and once I found out what it was and realized that had I received this same treatment, the same medical attention that I had received at 36 at, you know, even 23, 25 it made me angry. It made me angry because I was not sitting in some village without access to medical care or without the financial means to treat whatever was wrong with me, I just was undiagnosed and misdiagnosed. I do not want the next generation of women to suffer with what I went through.

I feel that if there is anything that I can impart to all of you today, it is that I am just one face. I am just one face in ten million in this country. I am just one face in 176 million in this world. After I had all those surgeries I went through a divorce and I am convinced that endometriosis severely affected my marriage. Without violating the privacy of my family I will not go into that but you can just imagine all the things that I am talking about. I decided to explore my own fertility and so Dr. Seckin and I went to a very nice fertility place here in New York and as you all may know, when you do that they do a battery of tests and I was told that my ovaries were even older than I was. No matter how good you feel about yourself, at 39 you do not want to hear that from anybody. I was told that I would probably never be able to have children naturally. Dr. Seckin wound up removing one of my fallopian tubes in one of the surgeries, and in a prior surgery I had had part of my left ovary removed as well. I explored the possibility of becoming pregnant at such a late stage, and it is not uncommon, most women wait until their late 30s and early 40s, to explore their fertility. If you have never explored the possibility of having children until then you are not sure if you can or not because unlike me, some patients with endo are completely asymptomatic. Now, my generation of women is waiting longer and longer to have children. Endometriosis is one of the leading causes of infertility.

I would like to challenge all of you to make sure that you talk about this illness with your colleagues after you leave this conference this weekend. I would like to challenge all of you to talk about this illness with your family because chances are you have someone in your life, maybe more than one person, who suffers from this ailment. Through understanding of the EFA we seek to educate, forward research, we do legislative advocacy and we promote awareness. I would like to enlist everyone there today to do the same. Help us help other women get the treatment that I so needed and got. Help other women to lead happy, healthy and productive lives. It is a very lonely illness. I have met professional women who had the disease and lied about it to their faculty; who had eight or nine surgeries resulting in a hysterectomy. I have met women who cannot afford the surgery and just go on and eventually just breakdown and like I did get sent to the emergency room. I have met women who are 23 years old and had hysterectomies. The terrible thing is that this does not have to be so.

I would like to end with something happy. I met a nurse and her name is Melanie at the conference. We had a nurses’ conference at Lennox Hill Hospital here not too long ago because school nurses, again, we believe are the first line of defence for young girls. I had no idea she was a nurse but she looked very familiar to me. She said that she had such excruciating pain all her life and that she contacted us and we were able to get her the surgery that she needed. Melanie then came back with her colleagues to our nurses’ conference and decided that she was going to help us help other women. I would like to enlist all of you to do the same.

I am on the other side of my disease now. I am a mother, I am a happier person, I am a healthier person. It is my life’s mission to help other women not go through what I went through. Sometimes when I am lying awake at night and I look at my daughter as she is sleeping I think why did I have to go through all of that pain? Why did I not find out about this before? I like to think that maybe it was meant to be. That all my undiagnosed and misdiagnosed problems, and all the pain that I suffered, were so that I could open my mouth and I could speak to all of you today about this illness so that the pain that I went through could be utilized. It could be turned into power; power to educate, power to research, power to combat pain and suffering, and power to be healthier for the next generation of women.

Thank you so much for letting me speak with you this morning. I really appreciate it.

Speaker:  Padma, on behalf of the AAGL we really, really appreciate your taking the time to share your story. It is incredibly inspirational and we also appreciate all your efforts in promoting awareness. We are going to have to skip the question and answers because we are just running a little behind, but again, thank you very much for being with us today.

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