My Personal Journey
How many people were here last year? All right, well, you can hear my story again then. It comes out a little different every time, so hopefully you will find something new.
I want to thank all of our speakers thus far and some to come for being here. It has been wonderful. Last year I was not able to be here for all of it and it has been very illuminating for me. It always surprises me how much there is to learn about this very multi-dimensional illness and the myriad ways that it affects all of us as a culture and as a society. I also want to thank somebody I forgot to thank in the morning who is Dr. Seckin’s daughter, who did this beautiful poster for us. She spent her time and did it and we really appreciate her creativity and her generosity, so wherever you are, doing something very interesting, thank you.
I am going to start at the beginning and hope I do not go too long because I know we are all a little hungry. I will just look over at Sharon who, since we were in college, always said, “Hurry up”. I was 13 when I got my period. I got it right on the morning of my 13th birthday, so great birthday present for starting my adolescence. Immediately and increasingly with every period, every month, I had very severe cramps. I had excessive bleeding. I bled for probably seven to eight days every month. I was bedridden for at least three of those days and still in very considerable pain for the other four of those days. When I say very considerable pain what I mean is that my boobs hurt and my butt hurt, my back hurt and my legs hurt and my stomach hurt. And my head hurt. Most of all my heart hurt. I knew I would be in this pain because my mother prepared me for it.
My mother is a nurse and for those of you who were here last year you met her, she spoke last year at the conference. And when she told me about my body and about all the things that mothers tell their daughters about the birds and the bees she said, “You know you will get your period and that’s what means that you can start to have a baby and that’s you maturing and you are going to have a lot of pain with it”, because I had a lot of pain. My mother got her first period when she was nine and she did not know what a period was. She eventually got her appendix out. She grew up in India and did not come to this country until she was almost 30, at 28. She always had a very difficult time. Even before I got my period I was used to seeing my mother miss work. I was used to my mother being bed-ridden with a heating pad or a hot water bottle with lots of pill bottles near her bedside. I remember lots of underwear being soiled and hand washed, hanging on the curtain rod in the bath and I remember uncles and cousins and grandmas and relatives saying, “Oh yeah, that’s Vijaya. Poor Vijaya, she has really bad cramps”. Then, when it happened to me nobody was surprised. Nobody batted an eyelash, including my mother, including the gynecologist who first saw me. It is funny, when you always hear – you watch Dr. Oz or you watch any kind of medical show on TV or you hear a speech, you start thinking you have symptoms but because you hear other people talking about their illnesses – in my case until I met Dr. Seckin and to a large degree even until ten minutes ago, when I heard you speak Doctor, I had a whole bunch of symptoms that I never heard talked about together. I had tears in my eyes when I heard you speak. You know, the two great loves of my life I think had a savior complex and now I know why! Now I know why I found them. More about that later…
I would take Vicodin and that would make me nauseas so I did all kinds of cocktails prescribed and not prescribed to help me. I did teas; I did Evening of Primrose Oil. When I started modeling I knew all of the names in all of the countries I lived in, in Italy, France and Spain, America and India and England of what the local brand names for those kinds of pain killers were. I went on the mini-pill. I was on birth control for most of my 20s and I have finally, after very expensive skin treatments and micro dermabrasion, finally gotten rid of the pregnancy patches that you get and the sun sensitivity with a lot of birth control. I had a car accident and I have a keloid scar from surgery so that later, when I was diagnosed or not diagnosed, I had ovarian cysts. I went to get those removed at Cedar Sinai in Lost Angeles. Later I kept having these cramps, nothing happened. I kept saying something is wrong. I went from doctor to doctor. I have Screen Actors Guild insurance. It is very, very wonderful insurance, it is very comprehensive. It is one of the best insurances you can have in this country. I lived in Los Angeles and London, in Paris, New York and Milan. I had access to the best medical care that money could buy. I have surgeons in my family. I have geriatric specialists, heart surgeons, my mother is a nurse. I was not somebody who did not have access to information, money or resources.
Finally, what just happened was, I was having dinner on my second wedding anniversary and my period was not coming but my back was really hurting and more than usual. I kept saying, “Something’s wrong, something’s wrong”. My husband thought I just did not want to go out. Well, I did not want to go out really, but because I was in so much pain. I did not want to disappoint him so we went to Bouley, a very fancy restaurant. Because of what I do the chef insisted on the tasting menu and many courses later I was so in pain I had to ask the maitre d’ for a pillow. I was so stuffed with food and drink. I went home and I did not want to make love. I did not want to go out. I could not bend over to put on my heels. I could not get the straps over my heels to get them off. I just kind of went to bed with my heels on. My husband was very upset and I said, “I have cramps. Something is wrong”.
I called my general practitioner, my doctor, and Dr. Prema said, “I’ll come to see you but I have anther patient”. He said, “Drink some mint tea, mint is an antispasmodic”. I said, “We are way beyond mint tea here. This is like you are putting a band aid on a hemorrhage”. He said okay. I kept calling him and said, “I’m calling an ambulance, I don’t know what else to do”. I called the ambulance, they came. They did not give me any medicine. They could not do that. They took me off to Mt. Sinai. The first doctor I saw at Mt. Sinai gave me something to drink so they could do a cat-scan. I threw up all over this $2 million machine. You should have seen the face of the technician – poor woman! Finally, I had emergency gastric surgery. This is where my scar comes in, after when I came to – everybody was so worried sick. My poor husband at the time said, “Okay, I get it, you were really cramping”. All my relatives were there, woken up from Connecticut. Driving like “what the hell happened”. Dr Harris said, “I went in there and you know you had some scar tissue. You had some scar tissue that had looped itself around your small intestine. We don’t know why the body produces scar tissue, it just does. And I notice that you have a scar on your arm, so maybe you just have a tendency toward that. I see in your chart that you had a couple of cysts removed in Los Angeles a few years ago, maybe it is scar tissue from that surgery that’s looped itself around. I think it has been there for a while because I just lifted it, I snipped it off and then your – usually the intestine will spring back – and it didn’t. It remained indented so I just massaged it and you should be fine now. Everything will be okay”.
I sincerely believe that Dr. Harris gave me the best care that he would have given his daughter, sister, wife or friend, to this day. But that – talk about icebergs – that was the tip of the iceberg. I thought okay I’m fine now. I will go back to the handfuls of Tylenol 3, of whatever, you know, one week a month the pad and the super plus. As a model I cannot tell you how many jobs I missed. And talk about counting the calendar, I know when my period is, I know when my ovulation is and I do not even have to look at a calendar because I can feel my ovulation. I know which side each month. It not only hurts in the front, it hurts in the back. It is like a rod, a knife going through your torso. It radiates.
I remember I would be up for lingerie jobs. You wanted to do the swimsuit and lingerie because those were the ones that paid the most and I had a lot of college loans. These ladies will tell you, it was expensive wherever we went. I needed the dough. But, I knew that I would bloat and by bloating I just mean over one cup size. By pain, and you all know we have said it a lot and we will say it some more, it was just difficult, not only to lose all the income, but to lose the ability to participate in my family’s activities. To lose the ability to be truly, emotionally and physically present for my loved ones, for my school, for my job and for my romantic partners. It was horrible. I remember Kelly used to play basketball in college. I remember she would get her period and pop two Advil and go with her basketball under her arm and extra Tampax in her pocket. I would look at her and I would say. “Why can’t I be like her? Why does she get to do that?”
She got to do a lot of things, reach the top shelf of the cupboard easier than I did too. It does make you – when something has to do with such a deep part of your womanhood and your body and your sexuality, is abnormal, that pain, emotional and physical, just radiates outward. It makes you wonder if the rest of you is normal at all, or will be. Will you be a bummer when you have this boyfriend and the fourth month and the fifth month and the sixth month you cannot go on that weekend to Niagara Falls? Or you do not want to go and put your bathing suit on. You do not want to do those things. Will you be a bummer? You just do not feel like getting out of bed and people think you are lazy or a drama queen. I am a drama queen but it has nothing to do with endometriosis.
I look at my daughter and I think, “Shit, I hope she didn’t get this part of me”. I want her to have everything, but not this. If she gets it, we will deal with it, with people like you.
I was 36 years old before I ever heard the word endometriosis. I had already had two surgeries; one gastric, one for ovarian cysts and nobody said those words to me – ever. Then what happened, I was on a photo shoot, it was in the middle of my cycle and I started bleeding. I sent the assistant out just to get me a Tampax to stuff it. I could not stop; we only had the location for the day. It was for my cookbook. When I got home I called Prema. He said, “Well, are you going to the gynecologist”? I said, “Yes, I went to this gynecologist”. He said, “Who did you go to”? And I said, “I went to whomever my insurance takes and she said it was fine”. He said, “Well, I’m very concerned about you because you take a lot of pain medicine and I know you are not addicted because you always take the same amount but still, you know, it’s not okay. Go see this specialist”.
I will never forget the day I went to see Dr. Seckin. In traditional form for my life I had over booked. I had like 4,000 things that day that started out at 5:00 am with an appearance on the Today show to do a cooking demo and ended with a fashion dinner at Bergdorf Goodman. My assistant made my appointment with Dr. Seckin at the end of my day for his last appointment and just before this very swanky dinner. I showed up at Dr. Seckin’s office wearing a cocktail dress, totally over made up, right, still from my TV make up in the morning, with all these sparkles and stuff. I thought he’s on 5th Avenue and 68th, Bergdorf is right there, so I will do my appointment really quickly and then I will run and it will be great. He’s very busy too, right, it is hard to get an appointment he is always doing all these surgeries. I go in there and I take off my gown and put on the other gown and get in the damn stirrups – it is terrible. We all know, we all hate – you should serve wine Tamer! You should!
I am there, he comes in with the nurse and the nurse is there too. I know the nurse is there to make me feel better but that just means two people are going to see my vagina rather than one, right? Okay, I am fine. Then he does the exam and I hate going to the gynecologist. The gynecologist and the dentist, both of them ask you to open up, right? So it is terrible. I always hated it. It is still, to this day very painful. You are learning a lot about me but to this day Dr. Seckin still uses a pediatric speculum on me and that is still really painful. It is. He did the exam and asked permission to do another kind of exam, a rectal exam, which I have never had. I said okay and he then he said, “Okay Ms. Lakshmi, please get dressed and I will see you in my office”. He had asked me a series of questions based on my form, which is new you fill out all those questions. He said, “Could you please get dressed and meet me in my office and have a seat”. When I asked if this would take long, because I am looking at my watch and thinking, “Shit, I’m late”, touching up my lipstick”, and he says, “Yes Ms. Lakshmi, I think it’s going to take long”.
I sat down and he looked at my chart and he said, “Ms. Lakshmi, I believe you when you think you’ve told me the truth to the questions that I asked you about your medical history and your private life before I examined you. But, what I can tell from examining you is that I think you’ve been in pain so long that you don’t even know you’re in pain anymore and that you have sublimated your symptoms so that you can go about your day. Because I don’t know why you’re not writhing in pain outside on the sidewalk, and I know you’re telling the truth because you walked in on your own two feet into my office. But I don’t believe you when you say you don’t have pain during sex”. This, this, this, this, this and this…he went on and on and on. For the first time I felt thoroughly exposed and thoroughly covered at the same time.
I am from India and we always bash men from the east and everything that they do not understand and you talked about over compensating because you have some need as a health care professional to save this patient. I will tell you that I think one of the reasons that Dr. Seckin is so good at what he does has nothing to do with his surgical prowess. He handled me in the most thorough, compassionate, patient and generous way, in almost a fatherly way, although do not worry we are not that far in age. He was just so understanding. For once someone did not belittle or minimize my pain, they actually maximized it. They were actually more worried about it than I was. For the first time somebody from whom I was sitting across said, “This is an emergency! This is not good. This sucks and we need to fix it. And you’re in too much pain too much of your life”. Finally, someone else was saying what I had always felt “the house is burning down. What’s wrong with me”?
A girl may come to you and she may or may not have endometriosis but if something is wrong, even if she does not have endometriosis, just asking the right questions may lead to solving a problem that has gone unaddressed. If I had been diagnosed at 13 or 14 or 15 or 20 or 25 or 30 or 35 that would have been 12 weeks a year, every year, that my life would have been completely different; conflicts that I may not have had, other symptoms and the collateral effects of those symptoms I may not have suffered through. You talked about rage, I was so angry. After I had the surgery with Dr. Seckin, this was my third surgery, then after that big surgery, he said to me, “I don’t know, I have to see when I get in there. There is really no way to know but I think the surgery will be about an hour and a half. I think you may spend the night at the hospital. You will probably be bed bound for the weekend. If we do it on a Friday you can probably be at your desk at work on Monday. Don’t go to the gym for a week”. I said, “Okay, let’s do it the day before Thanksgiving. That way nobody will know I’m gone. It’s a long weekend, my mum can come and take care of me [she always does all the time for any reason at all] but nobody will know, nobody will notice because everyone will be on holiday”.
I had my first surgery at Lenox Hill the Wednesday before Thanksgiving in 2006. It was not an hour and a half surgery it was a four and a half hour surgery. I must have had 17 or 18 biopsies, all of which except for one came back as endometriosis tissue. My kidneys were in stents. I had stitches…I had it everywhere. I had it in my kidneys, in my liver and every possible place that you could have it, I had it. Dr Seckin said, “At one point I got lost in your womb”. I said, “From anyone else this would be a compliment, but from you it’s not”! He said, “I didn’t know where I was. Really, I had to retrace my steps and think ‘what am I doing here’? This was connected to that…” I said, “I don’t need to know this”. He said, “No! You should come into my office when you’re better I’m going to show you the film”. I was sure one of these slides you all were watching was me. I said, “Please, please don’t show me that. Please don’t show me that”. He said, “No, you know what, I’m going to probably, we’ll see…we’ll watch you but let’s talk next week”.
I spent five days in the hospital. I was bedridden from Thanksgiving to February 1st. When you have all those weeks to lie on your back and stare at a white ceiling you look at your life a lot. And you look at your life differently. It just made me angry. It made me mad because I thought about all those weekends, you know, when these girls were doing something fun and I was not. All the stuff when I could have gotten more jobs. Anyways…I said it a few times, you get the drift. But I just got mad because it was not like I was sitting in some village in India without access to medical care. It was not like I was not going to the doctor regularly. It was not like I did not have the money or the proximity, I was just unhandled and mishandled.
Dr. Seckin said, “Well, you know I’d love for you to talk to this patient or that patient and really this young girl came to see me and she loves Top Chef, can you please just talk to her a little bit and tell her it’s going to be alright. I really think that what you went through would be helpful to other women”. I started doing that in little doses here and there and he encouraged me to get involved on a much more public scale and that is how we became co-founders. Then he said, “You really need to come in and watch that video because…” I said, “I will do anything not to watch that video and that is how I became a co-founder and lo and behold I had to watch that video”.
I am so pleased that you all are here. The reason that I have this microphone in my hand, and I scream from the rooftops any chance I get, is because I do not want the next generation of women to go through what I went through. In my mother’s generation we did not have the technology and we did not have the research that we have now. We are still a long way from where we need to be.
One of the early things that kind of put a fire in me was that when we first started in 2009 one of the reasons I started was because I went through a divorce. I would be remiss if I did not tell you that I believe that my condition was one of the major reasons, not the only reason, but a major reason that my marriage failed. I remember that I had a couple of other surgeries after that one big surgery. Dr. Seckin said, “You’re 39, I think we should freeze your eggs”. I said, “Yeah, I’m not going to have a baby today but yeah, let’s do that”. He came with me and we went to some fancy fertility clinic. When you go to freeze your eggs the first thing they do is take a lot of hormone tests and for this privilege you get to pay thousands of dollars because health insurance does not cover it, mine did not. I will never forget it, I was standing in the middle of my living room and this doctor called me and he said, “Ms. Lakshmi we’ve got the results back and I don’t think you can have children”.
One of the other things that Dr. Seckin told me when he went in is that somebody had removed part of my left ovary and they had not told me how much they had removed. They had not been very…specific about that. In one of the other surgeries Dr. Seckin was forced to remove my right fallopian tube. He was worried about my fertility and we went to this doctor and he said, “Ms. Lakshmi we’re going to extract your eggs and we’ll talk about a schedule to do that. But I don’t think there is a very good chance that you can have babies normally”. I asked him what that meant and he said, “I don’t think you have a snowball’s chance in hell of getting pregnant, naturally and even with an in vitro. I think you have at the most 10 to 15 percent chance of getting pregnant”. It made me so mad. I always knew I wanted to be a mother. I wanted to do it at a time that was right in my life, and also, ps – I had spent my whole life trying not to get pregnant; or my sexual life, trying not to get pregnant. Now to know that I probably might not was really depressing. Along the way, yes, a lot of anxiety and lot of depression, up and down and where does it come from and what is it for is hard to tell. It is very layered.
That is how I started the Foundation. When I first started working with Dr. Seckin and Jan and some of the other people who work very hard who are not here today…I gave an interview to Newsweek.com about my condition. A woman, a researcher named Dr. Linda Griffith read that interview at MIT and at the same time had coincidentally received a MacArthur Genius grant. She also had been silently suffering from endometriosis and had had had nine surgeries, the last of which resulted in her hysterectomy. Never was able to have children and right there on the spot decided she was going to dedicate the next decade of her life to this research. She managed in her brilliant way to cobble together, her words not mine, a few more million dollars. We were able, in concert with her, to launch the first research center at MIT in conjunction with Harvard Medical School a research center in gynopathology. That continues today.
We are also working on other things at the EFA like Centers of Excellence. We do a medical conference in spring. We also want to start a tissue bank here at Lenox Hill so we can research this. We do not have a lot of research on young women and young girls who have endometriosis because they get diagnosed so late.
You, all of you, are our first line of defense. All of you are in a very powerful, unique position to prevent a young girl from becoming me, from turning out angry, and worried about being a mother and having problems in her marriage, not being able to pay off her college loans, and all of that. There is a lot of good in my life. Google search will tell you about it, we do not need to discuss it today. The endo stuff really affected me negatively and it was always this thing I had to step over. There was always this thing I did like pull my shirt down over. I do no want my daughter or your daughter or your niece or our future granddaughters to go through this. And I do not want our sons not to know how to help the women they love. That is very important to me.
I cannot stress enough how much this disease affects not only the woman who has it, but those in her family, those at her workplace and every person she comes into contact with. The men in our lives suffer from this disease as much as we do, they just don’t bleed. It is true.
I do not believe that my husband did not love me to the best of his ability. I do not believe he is not an intelligent human being. He was just doing the best he could like all of us are. I really, really want you all just to be vigilant. When a girl comes to you…listen to what she says but like Dr. Seckin listen to what she is not saying. There is a lot of information in those silences as well. There is a lot of shame, there is a lot of guilt, there are a lot of societal prejudices that she is influenced by whether she knows it or not, whether we know it or not. I just really encourage you to help us sensitized everyone to this disease so that we can treat it. Endometriosis is very, very treatable. You can live a normal life as long as you manage it, as long as you understand it. I think to your point Doctor about information being the best antidote to that anxiety is so true, it is so obvious but so true. When you said it I said. “That’s right”. I was just thinking, “Do you know I haven’t really been that upset in the last few years. I haven’t…” I remember I used to get so nervous and all that stuff and now, when he said it, I know why, because there is a reason for it.
Thank you for coming, thank you for listening. Please ask questions. Please tell us how we can do this better, and please help us help all the women, and the men they love who love them, get better. Thank you.