Endofound’s Sixth Annual Medical Conference: Ending Endometriosis Starts at the Beginning
Lone Hummelshøj: I have appreciated the opportunity to be able to speak with some of the experts. We are going to move into the last session, which is a free for all. We have a panel up here with quite a few people missing and we are going to try to see if we can rein them in once they come back from the session. It is an opportunity for you to ask questions from physicians. I would like to emphasize questions, so please minimize long personal stories and please respect that we cannot do private consultations in public. It is more general questions and we welcome all the questions that you have. I will direct them to one of the physicians, and I know there are some physicians in the room available as well as I may pounce on them when they least expect it.
Who would like to kick off? Heather is in charge.
Audience Member: I have a question more for my daughters. I have a 16 year old and a 19 year old that show signs of heavy periods, cramping and pains. My older daughter has had two cysts that have burst, when do you really seek treatment to the point where it is in surgery to diagnose?
Lone Hummelshøj: Who would like to take that one, Ken?
Ken Sinervo, MD: It really depends on the chronicity of the pain. What she has been on, whether she has been on birth control and failed that. If it is affecting her quality of life other than just painful periods, heavy periods, what other symptoms does she have? If she also has bladder and bowel symptoms and back ache, I am not sure if she is sexually active, painful intercourse, all those things come into it to give us a picture of how likely the problem is endometriosis. Ovarian cysts rupturing by themselves that can happen in a lot of women but yes, the chronicity of the pain if something has been going on for more than six months and it is affecting her quality of life then I would recommend probably going to see someone, at least as a first step. Then going from there whether or not they need surgery if it is really based on the whole picture; examining the patient when appropriate and making sure there are not other things going on with ultrasound. If there are other bowel or bladder issues making sure those are not the culprit as well before you do surgery because there are much less invasive procedures than laparoscopy.
Audience Member: I will try to ask my question without too much of a story. I have had endo for over 25 years, diagnosed about three years ago and had a…about 17months ago. My question is what is the pain in waiting for the next surgery? I know that I need another surgery. My son is so little that I do not feel comfortable going at this moment. I have a lot of back pain, a lot of cyclical pain. What is the damage that happens over time and do I need to do this really as soon as possible or is it okay to wait a year or two?
Harry Reich, MD: First of all, as far as the necessity to be operated on right away I do not think exists. A good endometriosis surgeon if you had it done tomorrow or you waited five years would be able to do it. Some doctors will say “do it soon or it will get worse”. Another aside is like Ken said in the other session that you really need to have somebody who has experience with the bowel whether it is the gynecologist, which when I practice I had bowel privileges and paid bowel insurance. That is one of the reasons I stopped ten years ago because it got so high if you had bowel insurance and you were a gynecologist – so it is rare. Endometriosis that has been around for a while is almost always involving the rectovaginal septum in some way. The rectum is stuck to the back of the cervix and the top of the vagina. It is important to find somebody who knows how to take that apart.
Andrew Cook, MD: Just to add onto that I think we are all excisional surgeons and…go get it out. At the same time I think you do not have to wait to start taking steps to be healthier. The longer I do this the more I appreciate the role of chronic inflammatory disease. We saw Dr. Taylor talking about curcumin. I think if we went out and took the next 100 people walking down the street most people are pretty sick. They may not be symptomatic yet. As endometriosis patients do we need to get the disease out? Yes! And is it a cancer? I was thinking as we were talking this morning it is kind of like if you have the inmate in jail versus being out in the community where they can commit crime that is like endo is the malignancy in the jail. It is local in the pelvis. But at the same time the epigenetics, the processed foods that we eat, the inflammation, the self-care, the mind-body, the microbiome, there are all these things that we start talking about functionally, how is the body doing? Do we need more studies? Yes. But is it too early to go get healthy? No.
Part of that is we all have to take the hard steps in lifestyle and to make those changes. But I can tell you it is real, it is absolutely, positively real. You can effect a change in your health even if you cannot do excisional surgery right now. The ideal is to do all of the above, not just surgery, not just these steps to get healthy but all of it. If you do all those that is where personally I get so excited because that is where we are going to see the best results of the patients.
Harry Reich, MD: Let me just make a point here because I think it is important to realize that endometriosis is not cancer. This concept of DIE is, to me, false. It is DFE or deep fibrotic endometriosis. There has never been proof that this is an invasive condition.
Audience Member: I apologize if I get the information mixed up but I will not be here for the medical portion but I am really interested in the Firefly, about the imaging to diagnose endometriosis without doing laparoscopies.
Harry Reich, MD: In the back, I was just talking to someone who is involved in the studies.
Moderator: Who is presenting on the Firefly study tomorrow?
(Faint response from audience.)
Audience Member: So, it is not just an imaging? Okay.
First of all, I am just curious why you are interested in Firefly? What do you know about Firefly? (Audience response – faint.) Firefly I have not used but these techniques are to enhance the visualization of endometriosis lesions otherwise not easily detected by even the best eye. We surgeons do recognize a lot of things others do not and with the expertise and experience really do see things once you start looking at things 500 times or spent 15,000 hours in the OR, your eyes are different. It is like you develop seeing things at night. There is something about cutting the bright red and yellow and white components of the light spectrum. When you do that you start seeing other reflections, otherwise you cannot. I am very into this because I am very into tedious and precision removal of these lesions. I use, for example, blue dye under water and retroperitoneally. I put it up to create reflection to see – tomorrow I will present these pictures. There are grounds for Firefly but it really gives you some of the vessels, prominent vessels, that is really it. There are more than vessels in endometriosis. Like Dr. Reich was saying, it is a whole inflammatory process. There is more inflammation than glands. There are more atypical subtle lesions than typical lesions that we see, which we try to teach everyone, black, blue, very classic lesions. More endometriosis is the other endometriosis that we do not see. That is the symptomatic one not only it has fibrosis inflammation – those tissue have muscle in them. What does muscle have to do in the peritoneum but in the process of inflammation the body’s reaction to these glandular activities the body does pursue – there are multipotent cells there. In pathologist’s light we see muscle.
Coming back again I think what is most important is recognizing the lesions. That technique is good but I am not sure it is the total answer to see all the fine lesions that hide around.
Ken Sinervo, MD: We used Firefly for probably around three months. Personally I did not see a big difference in noticing the subtle lesions that Firefly was supposed to be picking up. The concept there is that the fluorescein dye goes to areas of increased blood flow and that is – it shows up as more green with the special scope that they use. I really did not find that it illuminated anything that we had not already identified. What we did first was we went through the pelvis without it with a regular scope and said, “Okay these are the areas that we think have endo” and then we did it with the Firefly and we did not pick up any lesions that we had not already picked up. Some of the areas that it showed that may have disease actually did not. I personally did not but it may help some physicians. Again, it just like another technique like the robot. It helps some doctors but if you are an excellent laparoscopist it may or may not help you.
Audience Member: Hi, so anyone that knows me knows that I hate any type of endometriosis diet because my thing is if we are telling patients to not eat certain foods then we are telling patients to not get certain key nutrients for their bodies. That is a concern for me. With that, I wonder how many of you doctors have actually taken the time to look at endometriosis from the standpoint of a deficiency, primarily B5 pantothenic acid? Since I know, first of all we eat horribly here, especially here in America and I know a lot of stuff is fortified with B vitamins but most of the things that are fortified with B vitamins are not fortified with vitamin B5, which is essential to the adrenal glands and how we deal with the hormones…Hashimoto and Cushing’s and everything else. I am just really curious like how many of you guys have actually studied endo from a vitamin/mineral deficiency point of view?
Moderator: Dr. Taylor?
Robert Taylor, MD: I am hiding behind the plant over here. You know this is part of my herbal therapy approach. I cannot tell you a lot about the B vitamins. I can tell you that the two vitamins that I think are probably most interesting to think about are vitamin A, retinoic acid and vitamin D. Those are the two that we have at least been investigating in the laboratory a little bit, both from the perspective of their anti-inflammatory effects. Vitamin D we have not studied as extensively but it is important to realize, and again, this is really a moving target right now in this country, the latest that I have read I think everyone is vitamin D deficient, or just about, but particularly black, darkly pigmented people because most of the natural vitamin D is generated in the skin as a result of UV absorption. I should be careful because I know that in Australia and New Zealand they are trying to keep people out of the sun but I think, here in this country, we are actually promoting a little bit more sun therapy. Obviously it has to be just – it is the Goldilocks principle, you want just the right size bowl. I think vitamin D is going to be important and it might be particularly important in African-American women I would say.
Vitamin A has been really an interesting one, retinoic acid. We have been quite interested in developing retinoic acid as a potential therapeutic in endometriosis. It has a lot of anti-inflammatory effects. But the big problem, if anybody has taken Accutane for acne, is that at high doses it is very teratogenic, it causes fetal abnormalities in utero. In reproductive aged women there has been a big move to prevent, or to be very careful, about using retinoic acid treatment. I think for that reason it has not caught on as a very popular idea, at least in some of the grant applications that we have put out. But I think that it is going to be interesting to look at both vitamin D and vitamin A going forward and I think that those are likely deficiency syndromes likely to have an effect on endometriosis and maybe, could be remediated by giving the right amounts of those vitamins back.
(Same audience member – very faint): …B vitamins are water soluble so we lose vitamin B every time we sweat. We are also not ingesting enough on a daily basis to begin with. We are already deficient and then a lot of us who like to be active and we are exercising and we are sweating, or we have hysterectomies, so we have hot flashes and are sweating so we are losing even more B vitamins as we are going. The reason why I speak on B5 is because the adrenal glands, those are cortisone levels and I hear so many of my endo sisters talk about having Hashimotos, having Addison’s disease, having Cushing’s. If your adrenal glands are not functioning properly then your cortisone levels are not going to function well, as well as your pituitary glands they are not going to function well, which also came up earlier today. It also regulates our stress levels. If our hormones are not functioning right and this is a vitamin, a natural vitamin that helps to regulate that, I am just curious as to why we are not looking at that, deficiencies and how we are eating and everything else as far as even getting to the point that we do not even have to deal with this. I get the A and the D but you understand.
Stacey Missmer, ScD: Well, obviously in terms of what is being looked at and is not, so to your point that absolutely with respect to diet there is not just an interest in supplementing but also in does early life diet, does diet during childhood and adolescence make a difference? While that is important going back to the earlier comments from today that it is unlikely that there is a specific vitamin or specific food that would prevent this complex disease. But having said that the key thing about the research is that to do those studies you need information on the diet during childhood and adolescence and then you need information ten and 20 years later to see what has happened. We have a cohort that has some of that information, most of the existing – there are many cancer based cohorts but they did not collect information on endometriosis. Going back to Dr. Reich’s point that those historic cohorts do not, even when they have endometriosis information, it may not be very accurate. That is a challenge to our research community to be making sure that we are collecting those types of data so we can look at that in the future. But it cannot be done definitively right now.
Andrew Cook, MD: I think the other point is we have got to get out of the endometriosis field a little bit, you are talking about deficiencies. If we go back there are 66,000 generations where we had normal food. It has just been the last 200 years we have had such a transition and about 100 years ago with the Pima Indians there was the first reported case of diabetes, we are now up to 50 percent. If you look at the obesity in the United States it is a majority of people who are overweight. We had the processed foods that started occurring these last 100 years, we processed out certain things and talked about deficiencies, vitamin fortified but we are missing the whole boat here. I think in that it is the phytochemicals, so getting rid of the processed foods, the inflammatory diet, and this is an inflammatory based disease that we are seeing more and more. We need better research on this but right now, if everybody stopped with the processed foods and went back to core real food that has all the phytonutrients and things that we have not even identified, vitamin A but that is one of many different members of that family that work together – so getting back to good diet. I think the idea the functional medicine – of looking at how does the bowel function? We are not talking about is there a blockage or something but the whole eco-system of the bowel, the microbiome, all the research that has come along the last two years and its affect from autism to weight and general health and psychological well-being. I think, again, we do not have to wait till we have all these studies to say it is okay to get healthy right now. That is going to make a big difference in how people are doing.
Ken Sinervo, MD: I think there is a bit of a misconception about the endometriosis diet. Twenty years ago that meant that you could probably eat 30 things. What we are trying to advocate now is really an anti-inflammatory diet, going more organic and again, trying to have all the nutrients that you can, of course non-processed and organic is definitely the way to go. Not the endo diet that you may have read online that says you can only have kiwi and melon and 30 other things, which I have had patients do that diet. Over 15 years I have had two patients stay on that diet more than a few months. I think what we have to realize what we are talking about at the same time.
Audience Member: My question has to do with current hormone therapies. This is “a what’s next” question. I have been on Lupron, I have been on pills. I have been on the Mirena and I am currently on Depo-Provera this is my third year going into it. My OBGYN did not want to take me off. But I want to be my own advocate when it comes to managing my own pain. I want to know what are the questions I need to be asking my OBG in regard to making sure I am on – I heard that you are not supposed to be on Depo-Provera for that long – what is next and what should I be asking my team?
Sarah Berga, MD: I am Sarah Berga. I am a reproductive endocrinologist. How old are you? (I am 32.) Thirty-two, you are very young. You need to ask yourself a couple of questions and then you need to ask your team some questions. You do not have to answer these out loud in public but you need to ask yourself if you want to have children, or if you have I do not know. You need to know what your ovarian reserve is. You need to know about your bone density and you need to know if you are having any untoward reactions to your current regimen and then what the alternatives would be. Because if you are just on Depo alone you are going to have low estrogen, which may be benefiting you in some ways and not benefiting you in other ways. You need a risk assessment for whether or not you are accumulating some side effects that are not good for you in the long run. There are alternatives. You have not run through everything. That is the good news. There are lots of ways to get hormones. I said this earlier in the breakout session. But I think from a hormone perspective it is important to emphasize that not all estrogens are the same, and not all progestins are the same. That is a bit of a dodge but that is because there is so much information in the ways that they are different that I honestly do not have time to tell you it all right now. But when you engage your team you want them to describe to you the differences between the estrogens and the differences between the progestins. Then you need to make sure that you are on one that is best for you at this stage of life that you are now. Does that make sense? (How do I know which ones are best for me?) Well they will help you know. That is hard. It is a lot of information that they have to synthesize in the context of you. I do not have any trouble convincing people that not all women are the same. I never have anybody argue with me on that but not all estrogens are the same and really you have to go to someone who understands how they differ. That I think is where you need to start your questioning.
Deborah Bush: I have a question and it was one I was going to ask this morning Dr. Taylor so I will direct it to you. One of the things that I heard very, very recently, in fact two weeks ago in New Zealand was a gynecologist say, “The pill is the work of the devil for young women, very young girls with endometriosis”. I think the reference was really in that it was, had the potential to mask the disease becoming more severe. I would really like your comment on that because she does really well on the pill. That was the first part of the question and the second part would you make it a combined pill or would you – what are your thoughts on a progesterone only pill?
Rob Taylor, MD: That is a really interesting question, a very good question. In these young women I would say that my experience, and I do not have really an adolescent gynecology practice but I do see the occasional patient that comes in with complaints like this, is that having a good bleeding pattern is really very important for these young women. In older women I am able to somehow convince them, coddle them sometimes, into believing that having spotting every day is okay. I do not know what that would be like if I actually experienced that myself but I think that it is easier for people to understand that if they always have a mini-pad that this might be part and parcel of what our treatment regime yields. But I think in these younger women they really want to have a regular bleeding pattern. To accomplish that you really need to be on a combined oral contraceptive to get a good cyclical, if you are going to do it that way if you are going to go with cyclical bleeding.
It might be that these patients, these young women do not respond very well to that and you go to continuous pills and then you lose that advantage. But I think the advantage of using a combined oral contraceptive is that they can have, if they are symptom free, if it is actually working for you, they can have periods like their friends that are regular and dependable.
Progestins only? Again, and this is not unrelated to the last question which in a woman now who is on Depo-Provera progestins only, as Sarah mentioned, do have the risk of rendering people hypoestrogenemic and that is what we want to do in a way to suppress the endometrial lesion growth. But in young women who are actually forming bone, whose cardiovascular systems are developing we really do not know I think what the effects of estrogen deprivation is very much in adolescents. We know a little bit from the Mark Hornstein and Eric Surrey trials what it is like in adult women if we put them on Lupron and what their bone density does over a period of a year. I am actually quite concerned that if we took a 16 year old with that same regimen, and there is actually a couple of papers that would support this, that actually we are having more of an impact with big time estrogen suppression on adolescents than we do on adult women because their bone turnover is much more dynamic. That is the drawback I would say of using progestins so I actually – if you can get away with it my preference would be to use an oral contraceptive in these young women, cyclically and if not then to try to go to continuous contraception in those with a risk of breakthrough bleeding. I am not exactly sure where the devil comes in but I think I would choose that particular mode over a progestin.
Deborah Bush: I think the comment was in that it was potentially masking the progression of the disease downstream.
Rob Taylor, MD: That we do not know. Actually whether endometriosis is truly a progressive disease has been debated in a lot of settings. If you look at teens and women in the 20s and women in their 30s and women in their 40s there is a progressive increase in the amount of endometriosis that you see. But those are in cross-sectional studies. We have not had very many opportunities to, at least in the literature, to look at repetitive laparoscopies in individual women but it seems like things come and go. In the baboon models of endometriosis it does look like it is fairly progressive. It is my hunch that it is a progressive disease but I think we do not honestly know that. We do think, I think most of us clinically feel that oral contraceptive pills will suppress the progression of the disease but there is really no data to support that.
Juan Salgado, MD: It is also very important that the patient adhere to the condition and learn about her condition. Most of the patients when they are so young they start to take the pills. They feel good, they do not have pain, they just go away. Then they come at 28 years old with a lot of deep, not infiltrating, disease. They way you like to do it, the fibrocystic disease of endometriosis. They get lost. It is very important that the patients that started with the pain very early, you explain, orient them and say to them that even if they feel okay they come for a check-up often, see someone every six months to see how they are doing. Learn about the condition and do not just feel good and let it progress and progress. When you really need to do something with your life you are completely covered with that condition.
Harry Reich, MD: I think you are talking about two different questions or two different problems. One is the press talking about anybody on the birth control pill and that is the sign of the devil that women, especially religious women, are being put on the pill at too early an age. The second point I want to bring up is that if they do have some symptoms they should at some point have an examination. The problem here is some people are put on the pill without an exam and as I have said before, the key is even in young women a rectal exam because that is where you can feel and locate the areas where this condition might be starting.
Rob Taylor, MD: Charles Chapron has a new paper out where there has been an epidemiological association of oral contraceptive pills use with ovarian I believe, or is it deep, I think it is ovarian endometriosis. I am not sure, this is the first time that data like that has been reported and I do not understand what the possible mechanism is but there is that little bit of information that is intriguing.
Moderator: In the interest of time can we keep the questions as short as possible please?
Audience Member: I just wanted to quickly say that I am in the Elagolix study and I now have a doctor for every symptom that I have. Is there any way that I can just see one doctor for my endometriosis?
Tamer Seckin, MD: I want to answer other people that have similar questions, they have everything, the bottom line I do not want you to answer certain questions but I do not want to be personal here but whether you have surgery, whether you are on birth control pills, whatever treatment you are taking, we know the pain. But if you have any pain with deep touch during intercourse, you have constipation with your periods, painful bowel movements, that means you are not treated well. Your surgery was not done well. You need to understand that. In surgery when you check the patient you can produce pain. You feel it. These patients do exceptionally well when you remove it. That is the measure of good surgery. Whether some patients can be on pills for years and pills do suppress the pain; however, other symptoms may continue. The study that Dr. Taylor mentioned, Chapron is really saying, “Look, it may prevent the endometrioma but it may not prevent the stromal endometrial deep fibrotic endometriosis being produced. It is a very interesting report. That is his feeling and I tend to agree with him.
Endometriosis is not necessarily progressive. That we know but certain disease is a different disease. It is not the same disease in some women it really goes. I respectfully disagree with Harry on that. On many things we agree. Yes, there is deep fibrotic endometriosis but there is one degree of endometriosis stromal that really goes to nerves, to the sides. It does not have to be rectum. To the legs, obturators and the patient cannot walk. There is that endometriosis, it exists, I have seen it, we all have seen it, but it is not very common. Many endometriomas are peritoneal endometriomas, a peritoneal disease. It is a disease of the lining and symptoms come according to what organ lining is involved.
Audience Member: What is the link between endometriosis and ovarian cancer? Do we have something to worry about here?
Stacey Missmer, ScD: In large cohort studies and national data bases women with endometriosis appear to have twice the risk of women without. Keeping in mind if we have a room of 100 women one may develop ovarian cancer among women who do not have endometriosis and two among women with endometriosis. We do not know clearly if there is a direct causal link. There is some suggestion that there may be some endometriomas that transform into malignancy. But the large scale data has no information at all as to whether the women had just superficial peritoneal, if they had an ovarian involvement, we just do not know for certain yet.
Lone Hummelshøj: It is very, very early days on the cancer data because we have to remember that those large registries are very old. They are from a country where they historically have not been very good at treating endometriosis. So we do not actually know how realistic that relationship is. But if I can just turn the statistics around here from what Stacey was saying, in a normal population of women 99 percent will not get ovarian cancer. In a population of women with endometriosis 98 percent will not get ovarian cancer. The risk is very, very small.
Ken Sinervo, MD: Just to go along with that there are some studies that show that women who did have endometriomas removed their risk was reduced compared to the women who continued to have an endometrioma. And then there are other studies which have shown that maybe proper excision may even prevent that elevated risk. We do not know, again there is a whole bunch of other biases which may not have been taken into consideration. For example, a lot of women have had other reproductive technologies and we know that Clomid can increase the risk of certain types of ovarian cancer as well. And the cancers that were elevated were two particular subtypes of ovarian cancer, endometriotic and clear cell. There are other cancers which are more common that were not necessarily increased.
Rob Taylor, MD: I want to just make a quick comment about this because I have really searched the literature extensively and have never been able to find any evidence for this. One would think that if endometriosis was associated with a cancer it would be endometrial cancer or an endometrial stromal cancer. Those are the cancers that are very most like the disease that endometriosis is derived from. There is absolutely no evidence that those diseases are any more prevalent in women with endometriosis. Frankly, I am surprised at that but that has been the observation. So this idea that non-Hodgkin’s lymphoma or ovarian cancer or some of the other things might be related to endometriosis does not make so much sense to me because the most obvious cancer that would be associated is not associated.
Sarah Berga, MD: One more comment. Birth control pills in general reduce the risk of ovarian cancer. And many women with endometriosis are prescribed them and actually they may not modify your endometriosis as much but they definitely decrease your risk of ovarian cancer.
Tamer Seckin, MD: With all due respect to your comment Robert, Dr. Taylor, we really do not know the subject well because until the last three years for 100 years they believed ovarian cancer was ovarian cancer. We learned that it was not it was coming from tubal regurgitation of the tubal cells. We just know that. It is very interesting that 90 percent of ovarian cancers are called epithelial cells. Twenty percent of those are endometriosis related cancers, which is clear cell and endometrioid cancer and this happens before the age of 44. Many ovarian cancers are diagnosed after the age of 44. The average is 65. We really do not know how much – certainly retrograde traffic has something to do because we know now the tubes are involved and we know a significant percent of the research points out endometriosis has some retrograde cell trafficking. Time will tell how much endo or stem cell activity, genetic activity of the endometrium has something to do with these cancers, what we eat – we will know. The bottom line is the cancer association cannot be overlooked. It is a rationale for excision surgery also. One Nordic study came out as excision surgery, people who have excision surgery may have diminished risk of ovarian cancer.
Lone Hummelshøj: We have time for about another three or four questions.
Audience Member: My question has to do with physician education and delay in diagnosis. Given what we know about early detection and complete excision giving women the best chance at living a healthy, productive life what is being done to make sure that all doctors are trained in making that early referral?
Juan Salgado, MD: Well there is nothing being done by the doctors per se. But, there are some entities like the World Endometriosis Society that had a big consensus they incorporated 56 groups including patients, physicians, experts from all over the world and they got a consensus of recommendations of how to treat. They talked about surgery; surgery for pain, surgery for infertility, medication and different things that should be used in a correct way. But it does not matter how many people do a consensus if the generation that is coming up from the residency programs do not learn the correct way or do not try to incorporate all that these people that are doing the studies – nothing is going to happen. I think that we need more studies, there are still some things that in my lecture I will talk on Monday that need to be studied so they get together and get the correct documentation because they differ on different things. But there are people working on that. I think in the future it is going to be much better for the patients who want and need the treatment.
Audience Member: I have a question. I had painful periods when I was 18 years old. I went to a doctor and he basically just put me on the pill. I stayed on the pill until I was 27, so nine years on the pill. I was not symptomatic, I did not have any issues and came off the pill at 27 and started developing pain on my right side, constant pain. I had a laparoscopy when I was 27. They said that they had seen some adhesions but that was really it. I had the first laparoscopy, just came off birth control three years later this past November and had another laparoscopy because the pain just kept getting worse and worse to the point where I could not walk. The pain went into my back and down my leg and they found the endometriosis implants on my ascending colon. I was wondering could it be possible the reason why this happened is because I came off the pill and then three years later had the laparoscopy and now I am not on the pill and I am hoping to have excision surgery sooner than later. I am doing myself more damage by not being on the pill now?
Enda McVeigh, MD: The quality of life is the most important thing and as Harry said earlier on endometriosis is not a cancer although we have had a bit of a discussion about the potential for cancer. You will not die from endometriosis. You will die from surgery. People die with surgery, that happens. Therefore, certainly in my practice and from what I have seen from Harry and others, I would continue on and have my quality of life. I would enjoy my quality of life on the pill. Do what the vast majority of your girlfriends who are on the pill who are doing that. When it comes to the time when you want fertility and you want to have children we can talk differently about that. We had a long discussion about whether you should treat endometriosis before fertility treatment or not. But responding to your quality of life, quality of life is the most important as you all in this room know. So my answer would be to stay on the pill, enjoy it, stay away from all of these people here as much as possible until you need them. Then go to the right centers. I think that is the right thing as you need to see the right people.
(Response from audience member illegible).
If it makes you feel better, if your quality of life is better stay on the pill. You might want a wash out period before surgery because of risks with deep vein thrombosis and other things but if your quality of life is better, enjoy it.
Audience Member: My question is another “what’s next” question. My GYN, my surgeon has recommended possibly either doing another surgery, a second excision surgery, which would be my third surgery or possibly doing a Botox injection. I was wondering what the general consensus is on doing Botox versus surgery after already having done surgery and physical therapy and all kinds of things.
Ken Sinervo, MD: I am not sure if your endo has wrinkles but if it does it might benefit but Botox is not going to do anything for your endo, if that is the underlying problem. If you have had superficial treatment of your endo then you are wanting excision done, which will give you the best chance of being pain free, then I would make sure that that is what they are going to do. Botox, I do not use it a lot. Actually, I do not use it very much at all if any. I use physical therapy a lot, use valium suppositories when appropriate for some patients to help the pelvic floor muscles relax. I think a very small percentage of patients would ever need Botox done if everything else has been done properly.
Audience Member: Quick questions, the topic is “Ending endometriosis, starting at the beginning”. My question is for this purpose do you think we can start at middle school since the children, like young from 12 years old, to have a class, like Endometriosis Foundation of America actually visiting children in the world. Every woman they have a diagnosis maybe after suffering ten years, 20 years until today maybe the people say I am still not sure I have this problem. So if we want, today, want to fight endometriosis, ending endometriosis I am questioning we can have a class in school, middle school. Actually when I was in China I was a teacher for young ladies since they had their period. At that time my knowledge was poor. I did not teach them that we had this problem. Today I am just thinking we should start this for study.
Deborah Bush, QSM: You are absolutely right and that is our focus today. I think if anything has come out of this meeting it has been early intervention is key. Congratulations to the Endometriosis Foundation of America on your ENPOWR project. If we are going to make a difference it has to be in our young people in school and I did not say young women I said youngsters in schools. The ME program in New Zealand has been running 16 years. I am going to deliver some results on that tomorrow that are really, really encouraging and look at a flow though. But one of the flow through to the community, and actually is it showing earlier diagnosis and earlier presentation, I can tell you it is but I will do that tomorrow. One of the things that I think we need to be very, very careful about is starting too young to put the fear into these young people. They are young and when I think about where this is pitched it is probably a couple of years down the track, after their periods start. Because then you have got something to base it on but if we are going to do this at the time that we are also teaching about pubertal change then I think we run into a problem at that age we need to be saying, “Hey, this shouldn’t hurt. And if it does you need to go and tell mum or get the doctor to be involved”. But I do not think that we should be talking about really if it is in the family and it comes up in terms of conversation but as a total school problem. I think we need to be very wise about what age we are pitching it at.
Harry Reich, MD: Let me make another comment. Most gynecologists cannot diagnose endometriosis in a teenager. It is subtle. The endometriosis that we see in someone who is 20 or 30 has been around a long time, we have had chronic inflammation for five, ten or 15 years with a buildup of fibro muscular tissue, so there is scar tissue. If you look at what would be just the back of the vagina, those areas back of the cervix in a young patient you have to have a very high index of suspicion of where she hurts and where to direct your biopsy. In a lot of these studies there is no biopsy proof. I would like to ask other people on the panel, it is a problem, it is very hard. You have to biopsy and you have to have a good feel for where the patient hurts to be able to get a positive biopsy.
Enda McVeigh, MD: Yes, I would agree with that and I would also agree very strongly about not over medicalizing it and not giving these people who are going through a very formative time in their lives a diagnosis that may or may not be right because the only way you are going to diagnose it correctly is through laparoscopy. You do not want to hand off down generations learned behaviour, “It’s okay, mummy is always sick and mummy had a hysterectomy at 25 therefore I’m going to have a hysterectomy at 25”. We have got to be very careful about that I think in general. We run an adolescent clinic in Oxford for endometriosis and are extremely careful about that. We get them on the pill and if possible discharge them and bring them back when it is right again, not over medicalizing.
Harry Reich, MD: Do not rush out to get your young one laparoscoped. I think we all agree because the difficulty that you are going to find is finding the right doctor to get a positive diagnosis.
Andrew Cook, MD: I would agree but I would also say that I think history is one of the most important things in working with endometriosis. If you always start conservative and try to be as natural as possible but you have a 14 or 15 year old that has had progressive pelvic pain over the last couple of years and they are now at the point where they are non-functional there is a point at which, all the other conservative treatments have failed, then that combined with history, just because they are 15 or 16, does not mean that they have to hurt when they would not have if they were 26. At some point you have to go look.
Enda McVeigh, MD: It is extremely important to get them to the right person.
Andrew Cook, MD: Exactly, exactly because the same thing, you have to know what you are looking for, do it and treat it so you are not getting this cycle of recurrent, crazy surgeries.
Ken Sinervo, MD: That is a big problem because so many gynecologists will say, “Well, she can’t have endo she is only a teen”. Everyone here knows that that is not the case. They can have disease in their teens. I think it also comes down to persistence if you are a parent or you know someone who has endo and they are young you want to keep advocating to get them to the right place. How many people have gone to two gynecologists before they got diagnosed? Raise your hands. How many had five? How many had ten? It is crazy. That is a big part of the problem. It has to do with our education as physicians as well. We are probably the biggest part of the problem.
Rob Taylor, MD: Stacey will probably be sorry she directed the microphone towards me because I am actually going to talk about her work. This conversation so far I think is really great and there is a lot of wisdom but it is focused pretty much on the here and now. If we go into the future, another decade or two, I think we are likely to have genetic tests that will allow us to actually detect kids in grade school who are at risk of developing these problems. I would agree with what everybody is saying, it is not necessarily the best time to say put the stigmata of future endometriosis patient stuck to the forehead. But I think it would give us an opportunity to figure out who we can counsel, who we can watch out for, prepare parents for these things and really start to approach this. So that is the promise of the GWAS genetics that Stacey described in her study. I would love to see it bear out in that direction. I think there is some potential for that.
Sarah Berga, MD: I want to make a comment about health literacy in general, which I do think begins early and nomenclature and having words for organs and hormones. Actually, the biggest barrier I find in my office is I have to do really a lot of education and it takes a lot of time. It is almost a distraction but I have to bring people up in terms of the lexicon before I can even begin to talk about the pros and cons of different hormonal preparations, the pros and cons of your reproductive organs to the extent that people are embarrassed to talk about that with young girls. I think we actually perpetuate for the next generation an illiteracy that I do not think we really want to have. I am not about scaring people but really I think the younger you are the easier it is to hear information about reproductive processes and organs. Actually you get embarrassed after puberty so the time really to introduce many of these core concepts is when kids are young and open. I used to teach fourth graders and they were really a delight. They could master the vocabulary. I had to tell the medical students I was going to ratchet up my expectations because fourth graders can learn a lot.
Lone Hummelshøj: I think that that is an absolutely wonderful note to finish on. I would like to thank the panel, Robert Taylor, Juan Salgado, Enda McVeigh, Harry Reich, Andrew Cook, Ken Sinervo, Stacey Missmer, Tamer Seckin and Sarah Berga. Thank you all for all the questions. We are not quite done yet so I am going to ask you to please stay and just hand over the microphone for a second to Deborah who has got a message. Then I have a few housekeeping points, then I am going to summarize the day for you. We should be done just after 4:00 as per the program.
Deborah Bush, QSM: Thank you folks. I just really would like to say I bought gifts with me from New Zealand. I would just like to say Tamer, thank you so much for organizing this meeting. This is a little piece of the Christchurch earthquake and inside the fish hook, which in New Zealand stands for strength and courage. I would like you to have that. This is something lovely. It is Puma Man and of course my book, thank you very much, Dr. Seckin, thank you.
Sally I know that I promised you a book, Dr. Sally… thank you so much.
Sally…MD: Can I say something about this book? This book is how I was diagnosed. I want a different copy of this, this is brand new, maybe about two months ago re-publish of this book on Facebook through Deborah’s Endometriosis New Zealand site for a blog I wrote about being in pain. This is how I was diagnosed. I suggest that everybody run, you are selling on Amazon? (Deborah: No, but there are details on how to get out…) Everybody should otain a copy of this book.
Deborah Bush, QSM: I can just tell you that the royalties of the book go to Endometriosis New Zealand, not to my pocket.
A copy to the Endometriosis Foundation of America, thank you so much for hosting me and I hope that this is helpful in your library if you can take that on behalf of the Foundation, Tamer. And, to my dear friend and colleague Lone Hummelshøj, I know that I promised you something and you will love this.
Tamer Seckin, MD: I just want to thank you. It seems like I may not have the chance to even thank you here. But while we are closing I just do not want Dr. Reich’s comment be misunderstood. He meant to say there is no jumping and triggering into laparoscopy in any woman that has pain during early adolescent years. Those women need to be educated and followed well. All algorithms of pain and pain related issues should be charted, followed by lateral trust with being a doctor and a patient has to be developed and timely intervention I personally believe that is why this meeting is titled as such. Timely intervention has a preventive value, life changing course for these women, preventing much advanced endometriosis in the future. Birth control pills have significant value after excision surgery. Thank you very much for your attention. Thank you for coming.