Endometriosis Foundation of America
Medical Conference – 2012
Endometriosis: My Journey
It is my pleasure to introduce Padma Lakshmi. She is the co-founder of the Endometriosis Foundation of America together with Tamer Seckin. I would just like to take this opportunity to thank you, Padma, because you have had the courage to stand up as somebody well known and help us increase awareness of endometriosis. It is very, very much appreciated and we appreciate that you can be with us for lunch today as well. It is over to you and I will go back to the tweeting!
Alright, tweet something funny. It is always better when it is funny. Thank you all for coming. I am very proud of what Dr. Seckin and I have started. We still have a long way to go but this is our fourth year. I am very, very excited to see all of you here so thank you from the bottom of my heart. Also, I want to say thank you to all the people back there at the table that are selling things and skyping stuff and doing all kinds of stuff that is way beyond my technological savvy, but thank you guys. Thank you to all of our volunteers and I also want to say a special thank you to Lenox Hill for giving us this beautiful room where we had, by the way, a sister conference. You guys are all here at the medical conference but we also this past fall, in October, had a nurse’s conference because it is my belief that young girls do not want to go to the gynecologist. Grown woman do not want to go to the gynecologist. So often the school nurses who are out there talking to high school girls and college girls are our first line of defense. It was very important to me to try and sensitize those people out in the field working with our children every day to really look out for the symptoms and the signs of patients who potentially have endometriosis.
I was galvanized to speak out about my condition because I was 36 years old before I was diagnosed. I had access to very good, ample health insurance. I had access to great medical care, the best medical care that Los Angeles and New York could provide, wherever I was living at the time. Still I went undiagnosed and then misdiagnosed and I do not believe that that happened because I did not have doctors who cared about me. I think that all the doctors that cared for me and saw me were genuinely trying to do their best and just missed it.
I got treated for gastric problems when that was just a symptomatic issue that was totally created by my gynecology. Today, I want to thank all of you for supporting us by being here but I also want to enlist all of you in further supporting us by helping us.
How many doctors are in the audience? How many physicians – can you raise your hands? Okay, great, that is great. What I would love to ask you as a favor, today is March 14th, in three months, by June, by the time the kids get out of school, by the time kids get out for summer break, if you guys could make sure you tell just 12 people that you think do not know about endometriosis. If you are at the gym, not just in your office, if you are at the gym or if you are at a cocktail party or if you are at a meeting or anything, just find an excuse. There is this thing that my girlfriends and I use to always talk about. It is a condition called “mentionitis”. Mentionitis happens for example when you are starting a new relationship, in my case with a guy, maybe you gentlemen with a girl, you know, whatever way you swing, and mentionitis is when you really like someone, someone is always on your mind or you are obsessed with something but you have not really come out yet with your new obsession. It can be like Louboutin shoes if you have never discovered Louboutin shoes. It can be Angry Birds but usually it is a person. It is usually something that takes your heart away. I would like you all to develop a temporary case of mentionitis with endometriosis and let us have this new courtship. If you guys could just make a tacit deal with me and Tamer and all the wonderful people who work hard that you do not know about, like millions of people who help us. If you could just help us out by having a real strong case of mentionitis. For whatever reason just tell 12 people in three months. That is one a week. That is just one conversation a week that you have to have. That would really help us out. Because you guys are physicians and you are very respected and you are very listened to. If you could just find a way to work it into the conversation. Politicians do that all the time. It is an election year, right? So they always answer the question they want asked. So just have that as your secret agenda. Because that would help us out.
We have three strong prongs of interest at the EFA; one is the medical component, we really advocate minimally invasive surgery as the Gold standard. We believe that it is best, getting young girls to have early diagnosis, getting rid of it out of the body so it does not spread. Dr. Seckin and a bunch of his gang take care of that. That is what this conference is about and he will enlist you in helping us in all of that and help you to understand whatever you are curious about. The second prong is research. To that effect we are in the first stages of establishing a tissue bank with Lenox Hill and I will let other people speak about that who know much more about that. We are really excited about that. If you are interested in that please help us. Please give us your thoughts, please ask us all your questions. The third prong, which is really my corner of the chore list, is awareness. It is really dealing with the lay public, of which I am one, and telling young girls and young women, listen to your body.
I am 41 years old and from the time I was 36 to the time I was 39 I had had five surgeries. That was after I had a couple of botched surgeries. That was after I had a gastric surgery that again was very symptomatic. I just got really angry and many of you are repeat visitors to this conference so I am not going to bore you with my whole story. It is online in several places so I will not talk about that today. Suffice to say that it really made me angry that there was treatment and I did not get treatment. I did not want the next generation of women to go through what I went through. I would have not missed three or four days a month for 15 years of my life, no, more than that – 23 years of my life. I got my period when I was 13. Not only that, I would not have missed all these jobs that I did not get to do as a model because I was too sick or family events that I missed. Just things that I was not physically but also emotionally okay to enjoy and experience as a full member of my family or my social circle or my professional activities. Endometriosis is something that affects the very fabric of a woman’s life and also, of all the people who love her, not just her – her family, her children, her friends, her spouse, her parents. You cannot function properly and it is a very alienating disease because now I am so desensitized to it I will talk about my vagina at a drop of a dime! But that is because of Dr. Seckin and getting me to speak openly so we can help other young women and other young girls.
I have a daughter now. Dr. Seckin has two daughters and we feel very passionate about getting early diagnosis because also the problem is most women that we have seen and we have talked to they are at least my age and they are very much at the late stage of the disease. We want to be able to do research on the early stages of disease as well as collect that tissue. We are very excited to partner with Linda Griffith at MIT who is doing some great work. We launched a research center for gynopathology there in 2009. We continue to have a dialogue with her and have her be involved in the organization. We are trying to make strides in each of these three areas of the EFA and you guys are such a juicy audience for us. Believe me, if I am putting on heels at noon you must be a juicy audience. I just really want to ask you all very humbly for your help; not only as doctors but as fathers, mothers and friends and as sisters and as daughters and as lovers of women, all of us. We had a medical conference here for the nurses and I actually had my mom come in because she is a registered nurse. She cared for me, she moved in with me when I had my endo surgery. I was bedridden from that first surgery from Thanksgiving to almost Valentine’s Day. When you have 12 weeks to lie on your ass and look at a white ceiling it gives you a long time to reflect on your life and to decide how you want to live it thereafter. My mother felt very bad because she is a very educated woman. She is a health professional. She told me when I was first going through puberty I had really bad cramps, that I had very excessive bleeding. I remember I had my appendix out and I actually think it had something to do with my period but nobody would listen to me. I am sorry that I told you in a way about that and to expect it because I think that what I did has kind of made you accept it. Not only expect it but accept it.
If this disease is developing in a woman’s body as the woman is developing herself in her own evolution during puberty, and her own sexuality develops right along with this ailment, and her own sense of herself as a woman contemporaneously grows as the tissue grows and spreads like rings on a tree every month, it becomes part and parcel of who you are. We get a lot of mixed messages in our society. Love yourself, be yourself, accept who you are but you know, then you start to accept the pain as reality and pain is your body’s way of telling you something is not right. It is the body’s natural way expressing some kind of discord. Often as young women we do not know what discord is, we do not know what should not be. Even if we do have somebody loving near us who takes us to one of you, very professional and eminent and learned and caring doctors, we may not tell you what you need to know because we do not know what we are allowed to say. As girls, we are also told to protect our sexuality. To keep our legs closed and to not talk about certain things. That things are private and that is not wrong. So it is very difficult because on the one hand you are supposed to be private and reserved but on the other hand you cannot be that way if you want to fix this problem.
I was lucky that I finally had a physician who I got to know who I started seeing because as a model I traveled a ton and he was great because he would come on set or come and make house calls wherever you were. I think the first time I met was at some hotel that I was at. He became my doctor just because I would see him all the time and he is my primary care physician. Finally, he was the one who found me Dr. Seckin because he was worried about things like my excessive bleeding and that I was taking all these pains meds and stuff. I said, “Oh, I went to a gynecologist two years ago”. He said, “No, you need to go every year. I do not think this is healthy, the way you look”, and he found me Dr. Seckin. That was because Ron listened to what I was saying but also to what I was not saying. As doctors I think it is very important not only to listen to what we are saying and also hear what we are not saying but also ask questions. Ask questions that may not pertain – it sounds odd but even a lot of times I would come in with something else, like back pain, and Ron would say, “Well, you had back pain two months ago, why do you have back pain every time around your period?” I would say, “Because I have bad periods”. It would get to where we figured it out but it took a long time. It took a long time and it took a couple of surgeries after. Somebody took part of my left ovary out and did not tell me. It was after I was rushed to have emergency gastric surgery because endo tissue had wrapped itself so tightly around my small intestine it was like stepping on a garden hose. It was a gastric doctor who performed the surgery and he is a wonderful doctor and he just did not know at the time that was the tip of the iceberg. He said, “Well you had that ovarian cyst removed and you know the body makes scar tissue. We do not know why it does, it just does. So that is what we think happened and it wrapped around that”. But that is not what it was, it was so much more.
So, if you have colleagues and you are eating in the cafeteria, if you are on the golf course, if you know anybody else that works in the body cavity tell them about endo. I have a lot of doctors in my family and the best doctors in any given city are very senior people, they are in their 60s now. They are at the top of their game, and especially it is not even just an economic problem, those people who went to medical school 40 years ago there is a page on endometriosis as my aunt said when she was in medical school. That is all you got. It was lumped in with other stuff. Most women do not see gynecologists regularly. Most educated, professional women with health insurance and time on their hands do not go to the gynecologist as often as they should. Thank God for Betty Ford because we all know her for the clinic but also Betty Ford speaking out about her breast cancer is the reason why all of us cannot be forgetful about having our mammogram. I want this next generation of women to learn about having their ovaries checked and their cramps and all that addressed just like my generation of women learned that we have to go get a mammogram. The minute you hit 35, and if you have cystic breasts go earlier, and as you age even more often. I want endometriosis to be so in the minds of people that when I open my mouth to talk about it I want them to say, “Yes, we know. We have it. Endofound.org, we got it”. I want people to be sick of hearing about endometriosis. That would be the greatest thing that would happen because I know so many women who are in my generation who are deferring motherhood into their late 30s, early 40s, mid 40s. As painful as my situation was there are worst cases of endometriosis. There is the case of endometriosis that is asymptomatic and that is really scary because then you do not know you have it often times until you are trying to get pregnant. As you know, it is one of the leading causes of infertility. We should all have the opportunity to choose to be a mother if want to be a parent, or a father as well if you are married to someone who has endometriosis.
Today the only thing that I can say is I was very lucky that I finally did get doctors who listened to me, listened to my silences also, and not a moment too soon – just in the nick of time. Had I gone a couple more years without treatment it is very possible that I would not be a mother today. I have a beautiful two-year-old daughter and I owe that to Dr. Seckin and all the wonderful people on his team that took care of me.
I really want to encourage all of you to be much more proactive in your own communities and one of the ways you can do that is that we have a choking poster – I call it the choking poster – but it is not the choking poster, I have got to stop calling it that. It is a poster that is like the poster that you see in every restaurant about if you see someone choking – it is an EFA poster that says do you have killer cramps. It is back there, please have a look. It gives our website and says you do not have to suffer alone. I want to see that poster in every girl’s bathroom. I want to see that poster in every high school locker room or gym. I want to see that in every college campus and health services, in every nurses’ office. I want to see a mini version on the back of Tampax box. I am serious! Do you know how much money Proctor & Gamble makes on those stupid things with wings? They are very effective, do not get me wrong. I did some research because I did a Pantene ad and Pantene is owned by Proctor & Gamble. I made my agent crazy because I made her call and call and call and call. I said, “I want them to put that information on so that every time that girl reaches for that feminine product that it is there”. And then I realized that the only reason they do it with toxic shock is because federal law makes them do it.
I am telling you this because we also need you as professionals to open your mouth in a public service way to your local politicians because the health of our daughters, and our wives, and our sisters, and our friends, and colleagues, and all the men too who love them depends on it. It is really, really important and I think that if we find it early, if I had my surgery at 23 instead of 36 I could have lived a different life. It probably would have been an outpatient procedure. I could have had a tune up every five or ten years. I do not want anybody else to go through that. Also the health care costs. Think about the health care costs. You guys know about that better than I do.
I am just asking you to not only listen but to speak, loud and from the treetops and often. Thank you very much.
Endometriosis Foundation of America