I am not a nurse. I am not a doctor. But I am an endometriosis patient. I was not diagnosed until I was 36 years old. In three years I had five surgeries; the first two were misdiagnosed….well, not misdiagnosed, just the tip of the iceberg shall we say. I got my period when I was 13 and every month I had excessive bleeding, I had lower back pain, I had headache and I had severe cramping. I had clotting. I had nausea. I had just almost such aching in my pelvic area that at times I felt that my whole hip went numb. And just my butt hurt. It got so bad I just did not know what was hurting and where it was coming from. As my mother touched on, I was on some pretty serious narcotics in order to quell that pain. The Vicodin would make me so nauseas and so constipated after two days that that would present its own series of problems.
I went on like that. I travelled a lot. After college I travelled. I lived in Europe and had all the European version of those narcotics, Naprosyn, Anaprox, whatever cocktail was on the market at the time. In Venice, the gynaecologist in Italy, put me on birth control, which caused such hyperpigmentation and other problems on my skin. I just kind of ambled along like that, trying to stop whatever holes in the dyke there were at that moment. I was rushed to the American Hospital in Paris once because I just started hemorrhaging and they said, “Well, did you miss taking your pill once or twice that can cause the body to just do that”. But it was so much blood, I mean it was…it looked like a horror story. Then I had one surgery in Beverley Hills, a very, very esteemed, good doctor, who said I had two cysts on my ovaries; one that was a regular cyst on one ovary and one that was not a regular cyst that was a blood filled cyst he called it that was an endometrial cyst. That was the closest I got to hearing the word endometriosis. I still had never heard that word. He did his surgery, and I healed from that and he said that all this should get better and it kind of did not. I said, “Okay”. Then he told me, “Well, maybe it didn’t because that was just your ovaries and maybe the pain is coming from somewhere else”. I said, “I know, but I thought you told me it was going to get better”. “I thought it would, but I guess it didn’t”, was his reply.
I just went back to taking the Vicodin and all that stuff. I would always have to look at my calendar when modelling jobs came to see if I was going to get my period in that week because I certainly was not taking a lingere job. Other girls did but I had other girlfriends who were really successful models, big models who you know the names of who would just pop in a Tampax. Take two Advil and go have their hair blown out. It was nothing at all, like they were going for a manicure. I always wondered what life was like in that other parallel universe for those kinds of women.
I was very moody. I was told I was very high strung, which I am. Still, in spite of having been treated by Dr. Seckin. He cannot treat everything. He thinks he can. I like to let him try but he cannot. I just kind of went on. Then, it was my second wedding anniversary and I had the worst cramps and back ache but, you know, we really wanted to go out so we went to a restaurant downtown, a very fancy restaurant downtown. My back was hurting so much that I asked the guy for a pillow. We had the dinner and because it is me and I have a food show I got all this food that I did not want and I ate this really big meal. We went home and I felt really awful, really, really awful. My husband thought I was exaggerating at little bit and, okay, whatever, it is our anniversary. I called my GP and I said, “Something’s happening, I’m cramping. I don’t know if I twisted my back and it’s spasming or I ate something funny. I’m getting weird pains in different parts…I just feel really uncomfortable”. Dr. Primas said, “Alright, relax, why don’t you drink some mint tea because mint is an antispasmodic”. I said, “We are way beyond mint tea right now…We are like out of the woods and into the jungle”. I called him back an hour later and he said, “Okay, honestly just drink a shot of scotch”. He was desperate to try to help me poor man, he is still my doctor. I called him another hour later. My husband is kind of feeling like I’m not feeling romantic. I was not, he was right.
Another hour goes by and I said, “Dr. Primas if you do not come here…”, my doctor’s great, he makes house calls in kinds of weird places for me, “If you don’t come here within an hour I think I will have to call an ambulance. I am really in pain!” He said, “Okay, I can’t get to you before midnight. Try and hang on because if the ambulance comes they have to take you somewhere. They can’t just treat you or give you a shot and make you better. If you can, try and hang on”. I tried to hang on and I could not. The ambulance got there a few minutes before Dr. Primas did and he made some calls. I was rushed to Mt. Sinai Hospital because he knew a doctor there. After hours and hours of making me drink something and trying to do a scan, I vomited up all over this $2 million machine. It looked like a Jackson Pollock. My family is flying in and being called, my husband is desperate, he is really sorry that he was upset at me of course.
I got emergency gastro surgery from a very good gastric doctor and he spoke to me after saying, “You know, I looked at your chart and I see that you had some cysts removed in the nearby area. You have a little piece of scar tissue that has wrapped itself around your small intestine. I lifted it up, I snipped it off. It must have been there for a while because I had to massage it to spring back. So think of it like stepping on a garden hose. All this food that you ate was blocked and that was what was causing this extreme pain. But you should be fine now”. I asked, “Well, why do I have that scar tissue”? He said, “Well, you know, you have a big scar on your arm – we don’t know why the body produces scar tissue, it just does. Perhaps it’s scar tissue from that ovarian cyst removal you had”. That was just the tip of the iceberg. This doctor is a good doctor who I believe really wanted to give me the best care he knew how. But he just did not know. He operates in the body cavity, he is a surgeon. And I have always suffered from gastro problems. I was told it was because I am Indian and maybe I was eating too much spicy food. Or because I write cook books and I eat a lot of funky things. It is true, I do. So I should really watch the gastric stuff. That was fine and nothing happened.
Then I was shooting pictures for my cook book and it was in the middle of my cycle and I just started bleeding spontaneously. I sent my assistant out to get me some Tampax and put it in and I called Dr. Primas and said, “This is weird”, and he said, “Look, you always take a lot of Vicodin, I know you’re not addicted, but it always bothered me how much you were in pain during your period. Do you have a gynaecologist”? I said, “Yeah, I have a gynaecologist in L.A. and he’s the guy who did the surgery” “Well, I think you need someone in New York because you’re living here now”, he said, “I have this guy, he’s a friend of mine, go see him. You’ll like him”.
I made an appointment with Dr. Seckin and I will never forget that day because it was a really busy day. I was on the Today show, so I had my hair all done. I had my fake eyelashes, I looked fabulous – you know, 8:00 in the morning. And I had this full day and then I had this swanky dinner at Bergdorf Goodman for my publisher’s wife who is a big designer, at 6:30, a big sit-down dinner and I had this appointment in between like 5:00 or 5:30 with Dr. Seckin. So I thought. “I’m not going back downtown again”. I wore this beautiful cocktail dress, so I’m like glittering in this tight cocktail dress and Dr. Seckin, he probably does not even remember because he would have seen me in the robe, stirrups…you know how it goes…I am there and he examines me and then he asked me permission to do a rectal exam, which no one has ever done in any office, so I said, “Okay”. His nurse is there and he does that and he says, “Okay, Ms. Lakshmi, get dressed. I’d like to talk to you in my office”. He had already talked to me in his office at first and he asks a lot of invasive questions, which I answered to the best of my knowledge. I know my _________ rule. I asked, “Is it going to take long because I have this dinner”? and he said, “Yeah, this is going to take long”. I said, “Okay” and I sat in his office. He said, “Ms. Lakshmi I believe you when you think you were telling me the truth to the questions that I asked you before the exam because you walked into my office on your own two legs. But what I am seeing as far as your anatomy goes, does not make sense because you should be squealing in pain outside on my sidewalk. I think you have become so accustomed to sublimating your own pain that you don’t even know that you’re really in pain anymore. It just seems normal to you now. I think you need an intervention. I think you need surgery. This is what you have, I’d like to do a biopsy. I’m going to send your blood work out because I think we need to address this. It’s not complicated, I do this every day for several women in my practice. But it needs attending to”.
It was the first time in my life, I was 37 by this time that somebody had said to me the word “endometriosis”. Now I have Screen Actors Guild Insurance, it’s really good insurance. The even cover some chiropracting…really good. I have lived in Los Angeles, in New York, my mother’s a nurse. I have my relatives…it’s like an Indian doctors convention, all different types. I was not living in some village with no access to information. I am a college educated woman, I went to the doctor’s, I get my teeth cleaned every four months for crying out loud! But I had never heard this word. I had never heard this word and that is shocking to me. I said, “When do we have to do this surgery”? He said, “We have to do it soon”. I said, “Okay” and he said, “Look, it’s usually an outpatient procedure but you have a really advanced case, so you’re probably going to spend the night in the hospital and then I would like you to stay in bed for the weekend and then take it easy for a week”. I said, “If we do it the night before Thanksgiving then I’ll have a long weekend and nobody will know I’m gone. Nobody will know I had the surgery and it`s…my family can come in if my mom needs to help”.
That is what I did, I had it and he said it was going to be an hour and a half and the surgery was four and a half hours. At least that first one was. Then I had another surgery and then another surgery. I was in bed, I was bedridden from Thanksgiving to almost Valentine’s Day. My mom came in to take care of me and when she need a break my aunt came in to take care of me. You know, when you spend ten weeks of your life on your back staring at a white ceiling it really makes you evaluate your life. And I was PISSED! I was angry because…then I stated finding out about the illness and I thought if I had had Dr Seckin in my life when I was 23…that is 13 years, that is 12 months, that is five days a month that I don’t have to be moody, cranky, anxious, in pain, nauseas, with a headache, with a heating pad and with Vicodin. All those modelling jobs I missed – that is a lot of money. All the dates that I was not really myself at. All the times I maybe fought with my loved ones, I was just so on edge from the pain that I could have prevented. There is treatment.
In my mother’s generation they would give you a hysterectomy. We have the technology, we have great nurses, we have great surgeons, we have the instruments to do something about it. That whole chain of doing something about it starts with you. If you see a girl, especially in high school, coming to you…you know, my mom talked about writing the sick notes, coming to you month after month, staying home two or three days, ask why. Ask if they have been checked, find a specialist who can check them out in your area and go to the website. If we can help you we will find somebody who can. They come to you with constant constipation, diverticulitis, lower back pain, bladder problems, swelling that is more than a cup size. I have stretch marks in my chest area, not from breast feeding, from way before when I was 14 because my boobs would get so big, and then they would go so small. Also, just everything in the pelvic area just hurt. If they do not want to talk about it to their mom, if they are coming in with excessive bleeding and they need pads, or they need to go home because they have soiled themselves and they keep doing this, that is also an indication.
A lot of girls do not want to talk to their parents. They need a neutral party that is almost going to be like an older confident/friend that just says look…and you have to sometimes say…I don’t know what the rules are about this, but you just have to say, “I’m not going to say anything. If you are sexually active that is not my business. My business is to keep you safe. And part of keeping you safe is knowing the real story”. Maybe you could approach it that way. Again, I’m not a professional so I am not going to tell you how to do your job, I am just going to say if I had somebody like you, and I did go to the school nurse’s office, and I did come in with sick notes, and I did have the principal call my mom saying why is she missing so much school? But he was a man and he did not know anything about women’s health and he just thought I was ditching school. All of what I went through I did not have to go through. Dr. Seckin over these three years kept talking to me. At first he would say, “Would you mind speaking to a young girl or this patient that I just saw because I think it would help her to hear your story”. At first I did not want to get involved, and then I said, “Okay…yeah. Do not give her my cell phone, give me her number, I will call her”. I started doing a little bit of that.
I was so galvanized by what happened to me and the “unnecessariness” of it. I did not want my younger cousins or my nieces to go through what I went through. And now I have a daughter and I look at her little body as I change her diaper in the morning and I think, “God I hope you don’t have what I have. But if you have it, we’re going to take care of it right away. I’m not going to tell you what my grandmother told my mom and what she told me, which was ‘you probably have pain and that’s just the way it is, and this is what you can expect’”. Pain is your body’s way of telling you that something is wrong. That is what pain is there for. It is your body’s way of communicating to you. The way that we as human beings communicate to other people is not always verbal. It is through body language, it is through mood, it is through facial expression and it is through behaviour. Please be sensitized to that behaviour. Please be sensitized to those other signs. You could change a girl’s life. You could really change the course of her life. I was lucky because just in the nick of time I got to Dr. Seckin. And even Dr. Seckin said, “Padma, I don’t know…” After that first surgery he told me something I never knew. A part of my left ovary was removed, and nobody told me. In another surgery Dr. Seckin was unable, this is why we do not have press in here today, although I really wanted to publicize this, I just wanted to talk to you openly, my right fallopian tube I lost in my fourth operation. He said, “I’m going to try and save it but I want to let you know that I’m, going to take it out if I need to because that is what I am going to need to do”. So I really do not know how I got pregnant…a coat hanger and some tin foil…however it happened I am really glad I did and I really cannot sing like a canary enough about the importance that all of us as a community have in a woman’s life and in making her feel good about her sexuality and good about her body and feeling “unimpotent”. To feel powerful enough to take control of her body so that she can go on and contribute back into the community in which she lives. That is the most important thing.
Now I am not so angry. I think maybe the reason I did go through what I did is because I was born to stand here today and speak to you about it so that other young girls would not go through what I did. I remember I was once in this room with Jesse Jackson…and he speaks in rhymes, even when he is having tea with just one person he speaks in these kinds of “Afroisms”, “We have to, as a community, turn pain into power, turn poison into power”. That phrase just stuck with me. If all of the pain that I went through, all of those days can now be sprinkled in a different cocktail, as power, throughout this community and the nurses’ universe, and then if you all tell five people and they tell five people, remember that Faberge commercial – I am aging myself…but….and so and so on and so on.
Thank you so much for being here. Thank you for letting me share my story and thank you for hanging up that glorious poster. I hope you have a great, great day. I hope you do not get wet going home. I hope you are able to help many, many girls and women’s lives. Thank you so much.
