Endometriosis Foundation of America
Medical Conference – 2012
Group Discussion
Audience Member: I have a zillion questions and suggestions. First of all, I thank Dr. Seckin for his presentation, which is an eye-opener as it should be for the researchers for the diseases in the whole peritoneum. Number two, we have to have the – it is very easy to say we should have this and that but who is going to pay the expenses? Only those who have insurance and are rich they can have access to these investigations and management. What about the poor people? Number three; there should be some genetic differences, what about race? Somebody has to see globally in different countries what the incidence is and why there is less, and why there is more in different parts of the world. I think the gene technology is very important and development of screening tests is very important and there should be questions, questions, questions, all the time questions. Thank you for listening to me and I need answers.
Lone Hummelshøj: Thank you very much. Would somebody from the panel like to address the genetic comment about what we do in different countries?
Stacey Missmer, ScD: One of the complexities about looking at international genetic data is that currently we still have very restricted source populations for genetic information and confirmed endometriosis information. Currently we have groups creating large consortia to have appropriately powered studies that include the United States, the United Kingdom and Australia. We are also going to be collaborating with Dr. D’Hooghe’s group from Belgium. One of the complications is that the true incidence and prevalence of the disease is still elusive, even within the countries with more advanced access to care and so you are absolutely correct that looking at geographic variation, questioning if geographic variation that is currently observed is actually true or if it is a diagnostic bias or selection bias is critical to moving the field forward. We just currently do not have the data yet.
Thomas D’Hooghe, MD, PhD: Just a short comment also related to what was just said. I think there are two things we all can do in research environments. One is to start a bio-bank. I have asked my PhD students to devote 30 percent of their time to developing and collecting the samples, developing the bio-bank, having full clinical information, having informed consent. All of that requires time, effort and money but we can do it. Second is prevalence studies are much needed. We actually came very close to this problem with our recent study now impress the endo cost study sponsored by the World Endometriosis Research Foundation, which actually look prospectively at costs related to endometriosis I think in nine countries and 11 centers. One of the main problems we had in discussing with the referees about the paper was what is the exact prevalence of endometriosis? The quality of research is poor and we need to do better and we can do better. I think there again the individual responsibility for the research here is go and figure it out in your own country. Try at least, you know? That is something that we can do.
Audience Member: Along the same lines but perhaps at a more basic level is there any anthropologic data, earlier cultures, more primitive cultures, anything about endometriosis in those earlier cultures? I am curious to see if we are not just dealing with the fact that our young women are remaining not pregnant, not reproducing, etc., etc. until they get older.
Thomas D’Hooghe, MD, PhD: It is a very difficult question but I worked for three years in Nairobi, Kenya developing the baboon model and based on that experience in Africa I was very interested about the prevalence of endometriosis in Africa. It is under reported but it is there. If you talk to gynecologists in private practice in Nigeria, in South Africa, in Nairobi, they see it a lot in African patients. It appears that there is a certain lifestyle factor where of course infertility in many sub-Saharan populations is related to PID, which with closed tubes may actually be protective against the development of endometriosis. The lifestyle of patients who are seen by private gynecologists with higher education and a lifestyle which is actually somehow protective against PIDs, that is the population where they see it a lot. On the other hand, also if you look at prevalence studies in other continents like India and Asia in general, it turns out also that, again limited quality of research, but that the prevalence according to ethnicity, if it is higher in any type of populations, it is probably in the Asian population compared to Caucasian, even higher in the Asian population than in the Caucasian. So I think this is all patches of evidence that research needs to be done much better. But it turns out, I think in my opinion based on the knowledge, that it is a global disease, affecting all ethnicities and that there is a certain lifestyle component in the sense that if you are at high risk for PID and actually get PID, this is not a population which will get endometriosis later in life.
Stacey Missmer, ScD: I will just add that Dr. Nezhat has a very nice summary of the history of endometriosis that was published last year and it does show a collection of evidence from hundreds of years ago that may indicate some growing understanding and recognition of endometriosis. But keep in mind that the conflation across time and across cultures in terms of dysmenorrhea, pelvic pain and understanding the implications of when that is considered pathologic and when it is not. That becomes a very complex history.
Tamer Seckin, MD: I just want to add something to this if you do not mind. Christina, I think the word hysteria, historical terms says a lot. Until 20 or 30 years ago we did not see endometriosis evidence by the way we see today by laparoscopy. The man who is here with us who had the volumes of gynecological and books in his…and I was very interested in those it was 30 years ago when I bought those books, eight of them. There was a big chapter on somato gynecologic issues on women. We did not know endometriosis as much as we know today. From that angle we are just learning the disease. Out of 15,000 women 3000 of them, 20 percent, have severe and moderate dysmenorrhea. That speaks so powerfully and so meaningfully. Linda’s work on the other hand there is so much coming; a big train is coming in research. We are going to illuminate the whole picture. Things will change with the computerized world. The way we speak to each other. Things will not get lost in translation. I think we are moving this in the right direction. I think it is meaningful to conform this diverse people. It speaks the same language. We are focusing on different areas but with the same intensity. Patrick’s work, small, but so meaningful and we have to argue decently with the people who do not do excision versus ablation. It said it changes the data. I would like Patrick in particular to comment on that. The study from Boston they are doing great work but when you do not play the same with the right instruments the music is different. Patrick, please comment on that. I want you to comment on excision versus ablation issue that you got involved in – literature also argued this point.
Patrick Yeung, MD: Well, that is a very interesting point. We are actually submitting a pilot study that was a multi center prospective study that looked at five different centers doing excision. These are referral centers in the U.S. We are going to try to use this study as a basis and as a sort of a justification to do another randomized controlled trial of excision versus ablation. I think we try to point out in this study in this pilot study that we have to look at perhaps different primary outcomes; that pelvic pain may not be the best outcome to look at because there are many different components of pain. Whereas in the other studies, especially the Healy study, their primary outcome of pelvic pain did not show a difference, other types of pain did show a difference and that quality of life may be a more meaningful overall primary outcome to look at in terms of how the symptoms are affecting the woman’s daily life. But also there has to be, I think, an issue of quality control and I think that is going to be if we do this systematic randomized controlled trial at the multi-center I think that has to be an element that is involved also. What are these people doing in terms of ablation and excision, what does that actually mean and we probably need to have a third party involved looking at quality assurance of the techniques we are studying.
Linda Griffiths, PhD: I am actually here because I interact with a lot of engineers in my team. One of the projects we have been talking about, and this sort of with Mark Loeffler’s inspiration, is being able to do much better job of capturing the images during surgery and doing image analysis and codifying them in a way that would bring information out that could be comparative across centers. Because for us it is hard; all of these issues that everyone has talked about are very difficult to take all these different kind of things and for me to process it and explain it to my colleagues on how we stratify patients. If we could get more quantitative data starting with the surgery on where the lesions are…if you are doing an ablation study a question is you pointed out, you need pathological confirmation of endometriosis and different surgeons may have slightly different calibrated eyeballs so could we try to develop tools that would help standard the way people judge lesions? It may not be possible but if we start to get databases where we could do the image processing, which is a huge engineering challenge to handle all that data, would that be useful for these kinds of studies?
Patrick Yeung, MD: I think that is really a benefit of laparoscopy is that it is very easy to make a video and that would be the basis upon which you could do quality assurance.
Audience Member: I am one of Dr. Seckin’s very grateful patients. I have two questions; can the onset of this disease be later in life? That is my first question. And the second is do you recommend pre-emptive screening for girls who have a family history of endometriosis even though they do not present symptoms earlier? I am saying this because thanks to him (Dr. Seckin) again I have two girls but I need to know how to map out their lives because I had what I think was severe endometriosis as well.
Thomas D’Hooghe, MD, PhD: Is the question really what should be the awareness from parents if they have endometriosis themselves and then they have daughters, what should they tell their daughters, is that the question?
Audience Member: No, should we screen earlier in life, at age 12 or 13, whatever it is, even if they do not have symptoms? Should we be checking them out or should we just wait for them to get their painful period, to show symptoms before we check them out, given the fact that there is a family history of endometriosis. Also, I want to know if this disease can…you know…if they could be free of it till they are 20, 21 and then it could…the onset would be later, at age 25 maybe. Is that a possibility or is it always, do we think that it is always a disease that presents itself…
Thomas D’Hooghe, MD, PhD: I think a very relevant question but difficult to answer since there are no data. I think common sense here in my view would be not to talk about endometriosis to them until they have symptoms that may be related to endometriosis, like severe pain during periods. And then, especially if that is resistant to pain killers or to a short course of OCPs. Then I would discuss the issue and the increased risk if you have endometriosis that your daughter will also have endometriosis should then be discussed. But before such time comes I do not think it is needed. Once there is this resistance during I think already three to six months of OCPs if the pain really does not become better then laparoscopy. That would be my suggestion.
Audience Member: Even though it would be a silent…
Thomas D’Hooghe, MD, PhD: Well, you see we do not know about this and we also do not know many of these girls would actually have a silent course of disease, which then once will turn symptomatic at age 20, we simply do not know. It has also to be a balance between making them worry about something they should not worry about. It is a balance between – it is risk management. So I think it is a balance between being aware and at the same time not worry them until it is needed.
Audience Member: I have a very simple clinical question, basically everyday gynecology question. In private practice we see a lot of young girls; they come in with a lot of dysmenorrhea. How do we counsel them off the bat? If you tell the mother your daughter might have endometriosis they never come back. How do we basically counsel these patients with all the interesting information about diet and lifestyle? Can we counsel them in a way that they are convinced that they can do something before they just disappear again and go to the next gynecologist and get the birth control pill and be forgotten about?
Stacey Missmer, ScD: I will say with respect to the diet the good news so far is again, the data does not exist yet showing us the influence potentially of adolescent diet. This area of research is new in that it really needs to be replicated in more populations. Having said that the current associations being observed are all consistent with what has been shown to be a healthy diet for other outcomes. Understanding the importance of a healthy dietary pattern and teaching healthy diet decisions to young children and adolescents is critical across public health. If there is benefit for endometriosis that is fantastic. The good news is that currently the message is consistent with a broader, healthy lifestyle approach.
Audience Member: I still do not know how you counsel them to get them someplace because you cannot just go off the bat and say, “Hey you need a laparoscopy”…
Tamer Seckin, MD: No, you are absolutely right. Let’s be straightforward on that. You cannot be always here either. Think endo in the back of your mind. Do not forget that. As long as you do not forget that…would you tell the patient they may have endo? I would not think so. I do not think we should sensitize young girls without any decent justification. However, make sure you have enough time for that girl and mother. Try to understand. Obviously the time you spend is very crucial. You have to find that algorithm of symptoms coming back to you. And if it is powerful there I think there is a justification to it, if it is really interfering with her. Is there a history in the family of endometriosis or ovarian cancer? I do ask these questions whether – for some it may not mean much but I do. That is very important. What is the issue here? There is secondary gain or not? Those are issues too. Are there prescription drugs involved? Even in young girls, so we have a challenge. Thank you, good question.
Patrick Yeung, MD: If I could just add to that very quickly, I think there is an opportunity there to really affirm the patient, this young girl, in the fact that her symptoms of pain may not be normal. I think that the overwhelming message that women get, young women in particular, from their doctors is that the pain that they have is normal and do not worry about it. That is sort of a normal course of being a woman. That may not be true. I think just to have them be affirmed that if they are missing school or if this pain is affecting their quality of life, or if they are needing heavy doses of pain medication, especially narcotics, that may not be normal and that may need to be further investigated, and that there are options. Young women especially these days have access to the internet, they can read, but just to offer them the options of how to deal with this pain, which may not be normal, and then they can decide. But I think that is a first step to say, “This pain that you have which is affecting your quality of life and your daily activities may not be normal”.
Tamer Seckin, MD: So there is a reason that girl is coming to you at that age. It is very important.
Audience Member: [Unclear]
John Sciarra, MD: I am going to be a spoilsport and ask this session be adjourned. Thank you very much for your attention.
