We all concentrate on the clinical and technical aspects of endometriosis because there are a lot of brilliant people in the room who can do that better than I. You’ve just heard one. But, I can tell you about what my experience is like and how that led me to join with Tamer in bringing you all here today. He’s mostly responsible for it but I am happy to be his cheerleader when I can be.
I am 39-years-old and I got my period when I was 13-years-old. And probably from the first or second month that I had my period, I was bedridden for at least two to three days a month. I had extreme pain in my pelvic area, in my back, in my head, but most of all in my heart. My mother, who was a nurse and a very educated women, told me that she suffered from many of the same symptoms and that some girls got it, and some girls didn’t. This was my lot in life. I believed her because my mother is a very sincere person. I went through most of high school and college missing family occasions, changing my garments at least three to four times a day, taking very heavy pain medication including Vicodin, codeine, Anaprox, Naprosyn and a lot of other drugs, some of which are still on the market and some which have been pulled off.
I remember graduating college and deciding that I would have to change twice during the graduation ceremonies and deciding to wear sari - not so much to please my family, who is Indian - but also because there were six yards of fabric involved in wrapping me in that sari and, therefore, that would be better protection because I happened to have my period during graduation. And I along the way went to regular checkups. It is always pain in the ass and elsewhere to go to gynecologist but it was especially so for me because I just would tell them what I had and they would say, “yes, yes.” They would kind of nod their heads in sympathy and prescribe more pain medication and I just could not understand why I did not get to just take a couple of Advil and pop a Tampax and skip about my day. When I got out of college, I started working as a model in Europe and Paris and in Milan and there were lot of times when I had to cancel jobs. There were a lot of times when I had to cancel personal trips, vacations, and a lot of times when I just did not want to tell people why because it is really embarrassing to talk about your period, especially when you are a young girl. It is really not fun. Not to your boyfriend, not to the editor who has hired you for the lingerie job, not to anybody really. And I kind of went along like that and about the time I was 32 years old I had a checkup and I was told that I had two cysts on my ovaries, one that was normal and another one that was endometrial, or blood filled - again by very well meaning doctor in California. But the words “endometriosis” were never said to me. The words “you have a condition and you should get your condition checked out, treated, and monitored on a regular basis so that your quality of life improves” were never said to me. Not by that gynecologist and not by many more who came before him.
So I had the surgery, I had my cyst removed and I was hoping that that would make it better because maybe that was the problem, right? Maybe that was what was bleeding extra every month and causing all this pain. And it pretty much went back to the way it was after a couple of months…and some of you women are shaking your head “yes” and you know what I am talking about. All of that physical pain is one aspect of it. The other aspect of it is the incredible loneliness that one feels, and the hormonal fluctuations. People start to tell you that you are exaggerating, or that you may be a little dramatic. “Regina Dramatis” is in infliction that I was told I had, it’s true. And it’s true, I am very emotional person but maybe I am emotional because I am always in pain…maybe that’s the reason, maybe it’s the opposite. And then I kind of went on like that still taking 2 Vicodin every three hours, being in bed on a heating pad for three days, then kind of feeling a little bit better, some months were not as bad as other months. But I was at that time 36 years old and I started bleeding at a photo shoot in the middle of my cycle, and I went to my GP and I said I don’t know what to do and he said I want you to see a friend of mine who is just up the street and you are always complaining of these cramps and I am always giving you a lot of pain medicine…Yeah, I said at least you are more understanding than the other gynecologist (he is a very good doctor, he is still my doctor) and he said go see my friend Tamer Seckin, and I said okay. He said he is very busy, so make the appointment, I said all right, but you know I am very busy. He said go to the gynecologist, I said alright.
So, I made appointment and I will never forget that day I walked into Tamer’s office - it was one of those wake up at 5 to be on the today show, go and do 14 meetings and then end at a dinner for some fashion designer at Bergdorf Goodman. You know, something where you are teetering on heels from 5 a.m. to 8 p.m. and you are kind of eating Balance Bars in the car on the way from one meeting to the next. And I kind of hopped into his office and I said, okay lets go and he kind of examined me and he said Ms. Lakshmi, please get dressed and meet me in my office and any of the nurse will help you if you need. I said, well is this going to take long, because I’m really on a schedule, and he said yeah this is going to take long. And Tamer said to me that I have a condition called endometriosis. He said he knew that I had a high threshold for pain. I thought he was going to give me a lecture because of how much pain medication I was taking and then maybe he was going have a talk about how that was not good and maybe I had a problem, so I was kind of gearing up for that and I said, its not that I have a low threshold for pain and he cut me off, he said, no I believe you have a really high threshold for pain. He said I know that because I have examined you now and while I believe you answered all of my questions before my exam. Honestly I believe that, Ms. Lakshmi, you have sublimated your pain so much that you do not even know you are in pain any more. And I know that because you walked into my office on your own two legs but the evidence that I have now based on examining you does not match with your lifestyle. And so while you may not have to stay in the hospital tonight I strongly encourage you to get an appointment with Lenox Hill Hospital so that I can operate on you. And all the sudden finally somebody believed me. Not only did he believe me, but he actually understood that there was a lot I was not talking about because it was embarrassing, because it was painful, because it was traumatic and after a while when people keep telling you its not that bad and you think okay maybe it is not that bad. Maybe it’s just me, maybe I have a really low tolerance for pain and maybe I am not just as tough as other women. After all, everyone gets their period, right?
I had that surgery, it was supposed to be an hour and a half and it was actually four and a half hours and I had 17 biopsies. I had my kidneys in stents, I had stitches in four major organs and I was bedridden from Thanksgiving to practically Valentine’s Day. And when you have 12 weeks on your back looking at a white ceiling, it makes you evaluate your life and really understand and appreciate what is important and cut out a lot of what isn’t. That was three years ago. I’ve since had, obviously, very different life changes happen for all different kind of reasons but I have also had four surgeries, total. And, I am a different women standing before you today and I am getting emotional because it is wonderful to see all of you here with open eyes and open ears and open interest about something I could hardly get my own physicians to listen to me about until I met
Dr. Primas who introduced me to Dr. Seckin. And since then I’ve met Sam Levin and a few other people and had the pleasure of actually meeting a lot of other endometriosis patients and Dr. Linda Griffith who some of you may have already met and talked to and will certainly be there tonight because we are honoring her. Pain is your body’s way of telling you that something is wrong. It is not something that should be ignored. It is something that should be addressed. And every aspect of my life is different today because of the help that I received and the loving care from Dr. Seckin. Everything, my personal relationships, the fact that I am a mother, the way I deal with my employees and staff, my empathy for other women, the way I dress, the way I feel about my body, the renewed enthusiasm I have from my own womanhood and femininity.
Endometriosis is something that’s like a web, like a vapor, like weeds in a garden that permeate everything, and stain everything. And metaphorically as well as clinically what you have to go and do, whether it is with laparoscopy or therapy or just understanding and support, is you have to go in there with a knife and a blow torch and you have to lift the rocks and push back the curtain and go under the bushes and get rid of it. Not only getting rid of it in the womb, but getting rid of it in the heart and the mind. And I hope that endometriosis and the education about it and the treatment of it evolves, and also the marketing of it, that’s where I come in, that is what I can do. I certainly cannot talk to you about resection surgery or anything else, but I took a very important decision just to open my mouth which wasn’t easy, I am normally a very private person, I am very outgoing, I am on TV, but I do not like to talk about these kind of things but I felt it was very important - very quickly, I know we don’t have a lot of time but I last year after all those surgeries took a decision with Dr. Seckin because I knew that endometriosis was a big cause of infertility, to freeze my eggs and so Dr. Seckin and I went to a clinic, very swanky clinic, and we froze my eggs and we did very comprehensive tests, very expensive test as well, I might add, to tell me that not only was it going to be difficult for me to have a baby but my ovaries were older than I was (and as a model you really do not want to hear that, I have to tell you) but this doctor who I am sure is very well meaning, told me that it would be impossible for me to have children naturally and even with “in vitro” it would only be a 15% to 20% chance. I remember that day sitting on my green velvet couch when I got the phone call, I was devastated. I had just gone through a divorce, I was single. I did not know what to do. And Tamer had been telling me you have to talk to people. You have to talk to people, people watch you on TV, people read your articles, have seen you in a magazine, you have to do it, and I would say, Tamer come on really, I do not know and hearing that story pissed me off, because if I had gotten diagnosed in my early 20’s, not only would I have had 13-14 years of no pain, of no embarrassment, of no income loss, of no emotional strife, I would have taken pains earlier to freeze my eggs in my early 30’s or my late 20’s when it would have been a snap, when I would have had to probably take less hormones, artificially stimulate my whole system less and I would have ensured, I would have thought about everything differently. But nobody tells you these things as a women, and most women in my generation in their 20’s, 30’s and even 40’s are delaying motherhood, because we are so busy with our career and our life that we think we have all the time in the world, then even if you do not have endometriosis you do not have all the time in the world. And it pissed me off, because I was not diagnosed earlier. I was not sitting in some village in South India where I came from, I had the access to the best medical care of any industrialized nation. I had the best medical insurance. I was operated on at Mount Sinai, at Cedars-Sinai. These are great hospitals, and yet even I as a college educated women had to go through what I went through and that is what made me start the foundation with Tamer. Because I believed not only in what he did, what other people like him could do and were not given the platform to do. Tamer has to take his own instruments sometimes to the hospital because they do not have them for him. That is despicable, its unnecessary and I really, I am Indian and I believe in Karma and I, surely after deciding to do the foundation with Tamer and having our ball last year, I found out I was pregnant, just like that! So I still have those eggs if I want some more kids, but I found out I was pregnant and I sincerely believe that it was me being galvanized by my own selfish needs that encouraged me to help other women so that young women who are in their college years now can get tested and do not have to go through what I went through, gave me the good Karma of the universe or god or whoever you want to say, giving me my little baby girl. And I am so pleased to be here.
Beyond all of the improvements and medical advancements that, again, very eminent people can talk to you about, I would like to see a poster in every women’s bathroom, in every locker room, in every college, in every high school, in every restaurant talking about the symptoms of endometriosis, just like that choking poster that you see in restaurants. I would like to see educational curriculum change so that when you learn about your body and you have human sexuality courses in high school you learn about the symptoms of endometriosis. I would like to see Procter & Gamble put literature on the back of every Tampax box about endometriosis. These are the things that I would like to see so that my younger sisters in college today and tomorrow do not have to go through what I went through. Please help me. Thank you.