Thank you all for coming and I know a lot of you are repeat customers, so thank you for supporting us. We are just a young organization and I am really not going to speak about pain with sex and endometriosis. I came into the room just at the tail end of that lecture. I think I have spoken a lot about it over the last couple of years as it relates to my personal story. But, I do want to say that all of your attendance is very important to us and if you could help us just by spreading the word in the different corners of the medical and scientific universe, to be kind of our soldiers in the field and just talk to everybody and anybody whenever it is appropriate, and a lot of times when it is not appropriate. Raise the subject so we get different people in different spheres of the medical community and the scientific community talking about this. Sharing their notes. Really exchanging information and exchanging their experiences with patients, with research or with whatever you are finding or not finding – just opening your mouth.
I will tell you I am a lay person and I was galvanized into doing something about it largely because of how deeply and personally this disease affected every aspect of my life. I know you have spent a lot of time this morning, and you will continue to spend a lot of time, talking about how endometriosis and sex are connected, and how they affect one another and the clinical implications of that. I would like to just remind you that the face you are looking at here represents millions and millions of faces that you do not see, and that you do not hear about. Sex is a topic that is titillating, is difficult, is emotional, is political, is exacerbating and exciting but beyond that and behind that is a woman’s heart and a woman’s self esteem and a woman’s self-worth. Today, when you are exploring all of these issues of the pudenda and all these different scientific terms I know you will because you are caregivers and your humanity is displayed by your very presence here. I just want you to remember this face, and the face of millions of women who you are helping by your presence and by your interest and by your activism within your profession and within your research and within your personal lives. All of us sitting here today must have at least one woman who is our neighbor, our daughter, our colleague, our wives or girlfriends or sisters, who suffers from this. That is the reality. The more I scratch the surface, the more I open my mouth, the more I go on Facebook, the more I just do a Tweet about it, the more I go on the Today show or give an interview to Glamour Magazine, the more women write to me and Dr. Seckin and our foundation about how they have been suffering, how they went from doctor, to doctor, to doctor, how they were misdiagnosed.
I have spoken so much about my own personal journey that I do not think I need to do that again here today, but I will say that I, to very briefly give those of you who have not been here before or heard me speak an idea - I am a 40 year old woman who is college educated, has a lot of doctors in my own family, and I have very good health insurance and I always have. I have lived in major cities like New York and Los Angeles where I always had access to the best medical care. I have had five surgeries, the first two without being told that I had endometriosis. One in Los Angeles in Cedar Sinai, one in New York at Mt. Sinai, both by physicians that I am sure had every intention of giving me the best medical care they knew how to give. Caring, wonderful, experienced, learned doctors who did not say the words to me, “Ms. Lakshmi you have endometriosis. That is why you have pain, that is why you have digestive problems, that is why we are doing this surgery”. I was misdiagnosed, I was under diagnosed and I was still in continual chronic pain. That saturated and pickled, that is a good word, I am a cook so I think in cooking terms, pickled every aspect of my life. It affected certainly my marriage, but before my marriage every relationship that I have had that was sexual. I am 40 so I have been sexually active for about 20 years. Every single relationship that also was not sexual was affected by my condition, because of my moods, because of my hormones, because of my physical discomfort, because of my inability to be present at certain times of the month in all the areas of my life. Not only the relationships but my school. I missed two days of school every month, sometimes three or four. I missed family gatherings. I know I had to say no to a couple of jobs at least a year.
Then of course there are the financial implications.
But all of that pales to how lonely it feels inside, when you are not even sure you are supposed to…first of all you are not sure you are supposed to have that pain. You always have been told you are because it is just your lot in life. Some women get a lot of cramps, some women do not but you guys all know that so I do not want to be repetitive.
I just want to be up here to say thank you first of all. Really thank you for your interest, thank you for your concern, thank you for your intellectual curiosity and thank you for the future interest and responsibility of furthering our message, helping us in our investigation and just aiding us in all the things we want to do with this organization. The most important part of that, and what is it – the crux of Endofound – is to make sure that the next generation of women, my nieces, Dr. Seckin’s daughters, our younger women do not go through what I went through. Because we do have the technology and we do have many caring, able, skilled professionals in the medical community, we just have to galvanize them. We just have to give them the tools they deserve. We just have to give them the forums, like this one, but many others all back in your own home camps. In your cities, in your practices, in your hospitals, in your universities and your corporate headquarters. The corporate headquarters are a big part of where we need help with.
Again, on my little soapbox and I say I really want to see somebody like a Proctor & Gamble put literature on the packaging of all feminine products. It is very simple, just like the toxic shock pamphlet that says do you have A, B & C symptoms? Do you suffer from this or that? Here is a hotline you can call. Here is a website you can go to to find out if you have this disease, so that every time that woman is reaching for that box she is reminded that if she has pain, it is not right. Pain is your body’s way of telling you that something is wrong. It is the mechanism by which your physical self tells your thinking self “hey I need help”.
I want to see a poster in every woman’s locker room, in every high school, in every university, in every health club, you know just like that choking poster, that says, “Hey do you have bloating of more than one cup size? Do you get gas when you have your period? Is it painful to be intimate? Do you have A, B, C and D symptoms? Here is a hotline. Here is a website. You may have this condition. There is help. I want to see the health services at every university be educated. One of the things that I thought we should do and we are trying to put it together for the fall is a conference like this for school nurses. School nurses, they are unsung heroes, they are the first line of defense. If we can educate school nurses to pay attention when a young girl is coming with sick notes every month or having cramps or some of these symptoms, or bleeding spontaneously, that maybe she can look for it, and she can refer that patient to a doctor in the nearby area.
I need all of your help to think of other things like this that I am not even thinking of because I am a lay person. We invite you to be more involved with our organization, we invite your counsel, we invite your input. And most of all we invite your activism.
Thank you very much.