Thank you ladies once again for coming today. We are quickly going to address the questions, we realize we don’t have a lot of time left but we appreciate your input in this discussion today.
Q: One of the first questions is what kind of questions to ask a patient in order to suspect endometriosis? Briefly, we can go ahead with that, Dr. Seckin?
A: Dr. Seckin: The first question and most common symptom of endometriosis is classical, painful periods. But not every painful period means endometriosis. If the period is painful…first of all…a painful period has two components; one is cramps - that is uterine, it comes and goes and discomfort and ache is a different thing. Cramps are usually two days when the flow starts; it should slow down and subside. If the cramps are accompanied by discomfort that means there is retrograde blood leaking back. The peritoneum is irritated together with bloat, gas and most importantly repetitiveness. Every month this is recurrent and then, do you have painful ovulation? Do you recognize that something happens in the middle of the cycle, at the 14th day. Most people recognize one right one left but painful. That is important, that is adhesion of the peritoneum. Obviously to the right sexually active person, difficult, even to me _. Painful sex. It is positional, they can _ on so they avoid… That painful sex, pain in bowel movements, particularly during periods. In advanced cases obviously these people cannot, the pain although having nothing to do with the period they have pain all over, mostly bowel symptoms for some reason…leg pain, back pain. They all come. The most important things, painful periods that has discomfort and painful bowel movements, those two and gas. Gas and bloat around the period that goes after the period is over that goes six days, five days and they…miss work, they miss school, they miss things.
Thank you so much, we have many questions.
A: Wendy Winner: Just one thing, from a simple standpoint I ask people when they say they have pain, painful periods and I will ask just real specifically, point to the area where you are having pain from. You have got to keep in mind too obviously someone could have it, it could either be appendix but you know your appendix is on the right side, that does not always correlate. But another thing, someone could have a hernia but I always tell them, “Point to me where your pain is” and then they get into describing what their pain is like. The only other thing that I ask them is, “What do you take for your pain? And that kind of also gives you a little bit of a clue – just real simply.
Alright, thank you so much Wendy. I am going along with the latter part of your question…your comment, what do you take for your pain, one of the other questions was:
Q: Can one dose of Advil three days prior to your period hurt? Dr. Seckin would you like to address that?
A: Dr. Seckin: Absolutely not. Taking non-steroidal, anti pain medication is very much welcome. You can take quite a bit, it does not hurt and I would advise it. If the pain breaks through that, that is one of the first tests, then pain breaks through three months of an oral contraceptives trial…I don’t go anything beyond. I do not like __. I do not get anywhere near to it. Those things are not in my library. Birth control pills, I believe, particularly to young girls, it is a great test because they should not be sensitized to the concept that they have a disease. So, as long as we can keep them on and monitor them, gently and prudently with an intelligent caregiver…
Thank you so very much. Another thing that Dr. Seckin brought out earlier in his presentation he said that we should recognize repetitive patterns, especially with school nurses you are with the students day in and day out. If you are seeing a pattern of chronic pelvic pain in these young children then definitely you want to go ahead and investigate further.
Q: Is there any truth to the rumour that tampon use can cause endo? Well, that is a good question. Just briefly initially I started menarche at age 11. All I knew was that I was bleeding to death. I went to the school nurse. She told me, “Here, use a tampon”. She did not tell me how to use it I put it in. Back then it was cardboard, so, I put that in too. But anyway, that did not cause my endometriosis and I did not tell Dr. Seckin that is why I was there.
A: Dr. Seckin: There is quite a bit written about tampons and endometriosis. I personally do not believe it does. It has nothing to do with…already the period that comes up, already it is up, it does not block anything. Obstructive-wise it does not obstruct - the period goes back or something, number one. Number two with tampons there is something chemical within the tampon…and the period and these unknown synthetic materials – that could be a concern because as you know __itself is not surgery, we know that. We know that many ovarian cancers are the result of mesothelioma has to do…this is absolutely rumour ladies. The top causes of cancer, ovarian cancers, this is definitely not. So anything you use, all these artificial things around here _ So that is how we think, epigenists, in other words it really goes to the messenger RNA and changes the code…these things are becoming…that is why they go _they have transferred, proven to be many ways, the environment…
Alright, I am sorry Dr. Seckin, I have to cut you off a little bit. Wendy is also going to address some additional questions.
Q: Wendy, the first question is about cutting patients open. Is it ever necessary to cut the patient even if they have previous surgeries with adhesions? Or can they always do it laparoscopically?
A: Wendy Winner: Well, nothing is every always, no matter what the question is. I would say in my experience and we see people who have had ten, 15 previous surgeries. They have had a lot of open surgery. Very, very rarely do we ever have to open up anybody. I think that we have certain things that we do. We do the way you enter the pelvis, the abdomen, and you have to be very, very careful. A lot of the times the bowel is stuck to the anterior abdominal wall. But what you can do is, some people even do ultrasound, in the operating room to check. We actually do not do that, we have never found a need to do that, honestly, but you could do that. It might be an option if someone has had history of being stuck all over the place. But you can, very carefully, before you put your instruments in, check and then sometimes people will go to an upper quadrant to make a small incision. There is a thing called…it is laparoscopy but the technique is called “open laparoscopy”. It is still small, but what you do in that situation where someone has had multiple surgeries it is another way that you can enter very slowly. If you see, let’s say that the bowel is stuck there and you cannot get in at that area, which normally is around the umbilicus or around that area, you can go to the upper left quadrant. There are different places you can go…as long as you can get in in one tiny area then you just very meticulously, gradually, plough through the adhesions. Every once in a while we get somebody that…it is like cement, there is just nothing open. No space. As long as you can create a tiny space then with the laparascope you just very slowly and meticulously have to take down the adhesions. There are times there are really horrible situations where it could take two hours just to get through all that before you can even see the reproductive organs.
Thank you so much Wendy.
Q: Wendy, this one is for you too. When you are treating young woman, you were talking about 13 year olds earlier, what are the results down the road or have you not had enough years to see this yet?
A: Wendy Winner: Well, for the most part I would say yes we have, but it has become more frequent that we are having patients that are in that 13 to 16-year-old age and so we will follow them longer. But thus far the people that we have treated at a young age…so far we have followed…they have actually done incredibly well. Sometimes what we will do, it is common that we will put people, especially if they have had ovarian cysts and we have removed cysts during their surgery, that we will put them on a low-dose birth control pill to keep their ovaries quiet, especially while everything is healing up.
Dr. Seckin: I just wanted to say, because this is a good question, if the young girl is diagnosed with endometriosis, we know she has endometriosis, we treated that. I can assure you, if you start educating them towards symptoms, towards care, an overall understanding, she will be your best assistant to the outcome of her case. That is what I believe and that has been with my patients. Many times these patients do require one or two more laparoscopies. Hey, there is nothing wrong with that, really because our goal is to prevent infertility. Our goal is to give her a functional life, to make her career work. Our goal is to teach her, when the time comes for family or having children, she is protected. Her fertility is preserved. Our goal is to prevent her having a hysterectomy. Twenty years, 25 years not knowing what you have and being told that is normal? That is a sentence. Somebody has to be accountable. Somebody…the information is out there. The ignorance is there but I like to put the blame on physicians, like myself, and as you go from that, I know we have to work. Many times when I look back I do not see endometriosis in the areas where I removed it. It is always somewhere else. It pops out…but that is fine.
Beautiful, very passionate.
Wendy Winner: I was going to mention that diet is a really strong component of how young girls, and how all of us eat. When you talk about most patients they will have, even without endometriosis, most people will tell you that when you have your period somewhere along the line you sometimes have trouble with diarrhea or constipation. That does not automatically mean that you have endometriosis. I always talk to people about how they eat and just I feel like a lot of times I end up being a nutritionist talking to them about reading labels, the same thing that I tell my husband, or I tell my children. Read labels when you are in the grocery store. Eat enough fibre in your diet, all of those things. A lot of this is just the normal…just because someone has diarrhea or constipation…and also the other end of it though is for follow up after they have had their surgeries. I really encourage people to wean themselves off the pain medicine but to eat properly.
Thank you so very much. That actually covered about two or three questions.
There were a couple questions that were more like “myth” questions so I just wanted to say I think there is a part on the website that dispels myths so I want to head you over to that. It is the endofound.org. If you had questions and they did not get answered definitely head over there, there is a lot of information.
Heather Guidone: Thank you ladies. Somebody asked a really, really good question. Could EFA team up with the techno gurus? Yes, we actually have a techno guru, he is here today and he is above you, you cannot see him…he is up in the galley, to develop an app for, is there an app for that? for endo awareness, and yes, the answer to that is in production. That is something that is very near and dear to our hearts. We have several volunteers lined up who will be assisting with that. Our programming guru is full swing ahead, please stay tuned. I cannot give much more information about that right now but awareness is a very, very big proponent of what we do. Between Dr. Seckin, Padma, Susan Sarandon and Dr. Oz, people that support us, we have had over 320 million media impressions just in 2011. So, awareness is obviously where it starts.
I do know that we cut the program a little bit short today. I do have to apologize for that. I know that it is October and it is snowing. I know that our program ran long and I realize that perhaps we did not get to all of your questions and concerns today but that is what the flowers are for, you can fight each other for them! If you just want to take a moment by showing your hands, does anybody feel compelled really to share something that they did not get a chance to ask or say today? We do have some time, a few minutes that we could really do that. We would love to hear your feedback, unless you have it written it on your evaluation form in secret.
Audience speaker: I just want to say I appreciated the animations. The animations help me to understand this disease very well because I am more of a picture type of a person. And secondly, I would like to thank everyone who shared their story. It was very moving and very inspirational, thank you.
Volunteer: I just wanted to mention one more thing. I don’t know if this is, I am not a patient, and also, I have just volunteered, so I feel like it comes from me it is not advertising but, the Endometriosis Foundation of America has a conference in the spring. I was lucky enough to attend part of that last year. There will be three days, March 15th, 16th and 17th. It is really in depth and if you are looking for more information it is a great place to go. I was totally impressed by it. I know we have another question in the back.
Audience Speaker: Good afternoon everyone, I just have a quick question for you. You said eat right? But I read something that said the cruciferous stuff, broccoli and cauliflower, actually staves off endometriosis. Is that true?
A: Wendy Winner: I will see what Dr. Seckin’s opinion is but I read everything under the sun that I have been able to get my hands on to seek studies regarding how you eat. There are some people who feel that when they have gone on a gluten free diet they definitely feel better. There are people…heck, if I eat a lot of cauliflower I get a lot of problems with gas. Some of it I think is, some of the ruffage and if you eat too much of any one thing it might bother you. You kind of get to know your own body. Probably the thing of all the things that may be heard other than just a healthy diet of fruits and vegetables and protein and less fried stuff, less spicy foods, sounds really boring, I have heard people that really swear by a gluten free diet.
Dr. Seckin: I agree with a gluten free diet, my patients swear by it. But then some of them, there are patients whose symptoms are back. As far as cutting meat product because presumably there is estrogen and this and that we also advise them, but I have so many vegetarian patients and probably one is Padma herself. It is probably more than diet. I think it is just keeping track of who you are as far as your body and weight, something more than just endometriosis, it is just about feeling well. There is no answer to that…unfortunately.
Heather Guidone: It is about what works for you and leave the rest, pretty much. Shop the perimeter as Dr. Oz says. Take what works for you, leave the rest. But it is trial by error.
Wendy Winner: I have a quick comment, and I leave this up to Heather and Endofound: Because everyone has got things like Skype these days that I am sure that if anybody at your school or wherever, you had a group of students that you wanted to try to do some interactive thing with them, I am sure through Endo Foundation that we might as well take advantage of all the technology. If there is anything we can all help you do…we would love to go to everybody’s school but I do not think that is feasible.
Heather Guidone: That is very true. In fact I was in a school not too long ago, 8th grade health students, I was really more nervous talking to those children than I am before all of you or the legislators that I have to see in Washington in two weeks. And these kids were hungry. Hungry sponges for the information, and they were so grateful, so it really is, it is where it starts.
I think that unless there are any other pressing comments I would really just like to take the opportunity once again to just thank everybody, from our hearts so very, very much for being here and being part of this and for being part of what we hope will be the first of many, several, conferences of this nature because it really does start with you. It starts in schools, it starts in clinics, it start with the adolescents. Please take what you have learned here today. I know we threw a lot at you, we are a team. We could do this day in and day out, four or five days on end in a locked room and just go on. But, we did throw a lot at you today, please we are here, we are your resource. Take Padma’s poster, put it in your locker rooms, put it in your hallways, put it in your health centres, put it in your gyms, and put it in your ladies’ rooms. Put it anywhere that you can that will help her and help us and help Dr. Seckin raise awareness. We need to work together. Endometriosis is a truly multi-disciplinary team, that does not just mean inside the O/R. We talk a lot about that when we, Dr. Seckin and myself, we will talk about you need a complimentary team in your O/R but we need a team out here too. We need all of you.
With that, from our hearts, on behalf of our speakers, on behalf of our founders, Dr. Seckin and Padma Lakshmi, thank you all for braving the snow in the midst of deep winter and coming in to New York on Saturday, so thank you so much.