Patient Awareness Day
The Lifecycle of Endometriosis: From Diagnosis to Coping with Disease
Sunday April 17, 2016
Lenox Hill Hospital, Einhorn Auditorium
Audience Member: Hello, I wanted to ask you again about the antibiotic that you mentioned that is not as harmful as the regular ones? That is helpful for people with bowel, like IBS symptoms?
Bruce Yaffe, MD: Xifaxan is the name of the antibiotic and it is a prescription drug that is now being advertised a lot for irritable bowel syndrome. It is not absorbed, it does not develop resistance and there are some people who have been taking two pills a day for 20 years because they have conditions of liver diseases, etc. so it is a very, very safe medication. Sometimes it is very hard to get through the insurance plans, which is sometimes a source of great frustration. It is called Xifaxan.
Audience Member: Thank you so much.
Audience Member: My daughter is 20 years old and was diagnosed only after a year of having GI symptoms. I was very grateful for that. I just cannot believe that even after having excision surgery she is still so unwell and her symptoms after excision surgery are exactly the same as they were when our journey started. The onset of her symptoms were so acute and it was…I have been to many of these…it was not anything quite like this but any talk that I listened to, or anytime that I am looking something up the IBS related symptoms are so rarely mentioned and everybody talks about pain. My daughter never had any pain and to this day she does not have any pain. She became severely bloated and constipated almost overnight after starting a course of birth control pills. It was the craziest thing. Anyway, eight months later through many helpful people, Dr. Seckin, other people involved she was diagnosed with endometriosis and we know that her diagnosis was very quick. Her surgery happened, excision surgery happened with a top-notch excision surgeon in New York but her symptoms are back. She is severely constipated and often bloated and feels full very quickly. She is down to about 95 pounds and I do not know what to do next. She has been through all sorts of GI tests, not since her surgery and she has been on Xifaxan a few times last year prior to surgery. So I do not know at this point where to go from here and I just wondered if you have any guidance for someone who has already had the surgery but is still suffering from all the GI symptoms.
Bruce Yaffe, MD: Obviously I am not going to be able to diagnose what is going on with your daughter without seeing your daughter and trying to understand the…
Audience Member: Oh, you will be seeing her.
Bruce Yaffe, MD: …but I think that after surgery there can also be adhesions, which can lead to all of the symptoms you described. I think that again the idea of perhaps post-op adhesions are causing this problem even though the endometriosis is under control. It could be contributing but again it could be just treating the constipation with simple non-prescription substances such as magnesium citrate or softening the stool with omega-3 fatty acids and putting her on a FIBMAP diet along with treating bacterial overgrowth might be of some value. But certainly the idea of looking for the possibility of adhesions post-operatively could be part of the problem.
Tamer Seckin, MD: I have a question for you. I cannot see your face but I think this is a very challenging situation. I do not even know whether I did the surgery or not but the bottom line is that is not the point here. There will be patients whom doctors with excision surgery may not help but still there is a chance of incomplete surgery that is why we insist that videography of surgery is very, very important. If it is in my case I like to, I really do not know, I do review the videos. I do not rely on just verbal transcription of the OR. That is the most important aspect of following up the patient. Thank you.
Kristin Patzkowsky, MD: I just want to add one thing. It sounds like your daughter has a lot of GI issues but in this conference we are talking a lot about endometriosis. But there are other causes for pelvic pain that are often not diagnosed and recognized like vulvodynia neuropathic pain, pelvic floor myalgia, pelvic floor dysfunction – it has 20 names only it is the same thing. But a lot of times those are overlooked and until those issues are addressed then people will continue to have pain. Endometriosis is often just a component of it and also the functional bowel. It is always frustrating when patients come in and they are like, “I saw a GI doctor and they did a colonoscopy and endoscopy and they said everything is fine”. Yes, of course they are. That does not mean there is not a functional problem. As you mentioned addressing medications that can help with the symptoms is a functional problem. It is not a structural problem. So perhaps some of those things could be addressed and could potentially be helpful to her.
Audience Member: I just have a couple of questions about the statistics that we hear so often. The first is, you know we hear an average of ten years or nine years or seven years diagnosis and I am curious if that is from the actual onset of symptoms or from when a patient comes to her provider asking for help. I know a lot of women realize later that they have had symptoms since they were 13 but did not realize they were symptoms because they were told it was normal.
Lone Hummelshøj: That is the total number of years. What we have seen in earlier studies is that it has been 50/50 so it has taken the woman a long time to seek help and it has taken the physician a long time to diagnose her. That first part has now been significantly reduced and I think that is an amazing accolade to support organizations in awareness and advocates that are encouraging women to seek help when they have symptoms. Typically on average that is about a year a year and a half from first experiencing symptoms to seeking out but we are still seeing that same diagnostic delay in terms of actually getting a diagnosis. We also see on average that women have to see upwards of five different physicians before they get that diagnosis. So we need to bring that down as well.
Tamer Seckin, MD: Also, one more comment to that as it was made clear in the case of infertility cases there are quite a few infertility patients that never knew that their problem was endometriosis and some are silent. Also, as Dr. Bruce Yaffe said many women really go into menopause without realizing they have endometriosis. The incidence of endometriosis is ten percent, at least ten percent that is really per patients that are hospitalized and…
Lone Hummelshøj: Let us just be clear on that. The ten percent is what we are estimating is out there of women with endometriosis but we do not know what percentage of that, or how many of those actually have a diagnosis. And many, as Dr. Yaffe rightly pointed out go through life without knowing that the issues they are having is due to endometriosis. But we do not know what that incidence is because we do not have reliable statistics.
Tamer Seckin, MD: Particularly on infertility patients.
Lone Hummelshøj: And on the diagnostic side once a woman with infertility seeks help she seems to get a diagnosis a lot quicker than the woman with pain unfortunately.
Tamer Seckin, MD: Monica, would you like to make a comment?
Monica Halem. MD: Hi, I’m Monica Halem. I am actually a physician as well, however, I did not know I had endometriosis and had silent endometriosis and had many years of infertility until I was diagnosed. Since then, since having corrective surgery I actually had a baby. Thank you. It was silent, I had no idea and because I had the infertility a doctor was smart enough to recognize that that was a possibility for me. I can attest to that.
Audience Member: I have a question about the stem cell transplant. Several types of stem cells and what kind of stem cells do you use and also the United States cannot use the placenta cord blood stem cells. But nowadays in the United States stem cells are banked so many patients have delivery they have reserved the placenta cord stem cells. This treatment is present cord blood stem cells best treatment for every country it is in use except the United States. What kind of placenta cord transplant, can be used or not? They reserve the placenta in the bank in the United States.
Tamer Seckin, MD: That is a great point. But what I know, and I follow the stem cell aspect of this closely there are no stem cell therapeutics are used in any endometriosis treatment yet. I do not really see how yet either because we have not understood the real role and genetic implications of it well.
Audience Member: For endometriosis development in cancer you say so. Then, in the United States, lymphoma patients use stem cell transplant. Most patients are cured in lymphoma now. If development of endometriosis they have used chemotherapy you are supposed to use the stem cell transplant.
Tamer Seckin, MD: Well nice suggestions but it is very difficult to put the scenes of lymphoma versus endometriosis in my opinion. I would like to get some more information from you with respect that you have specific suggestions. Thank you.
Audience Member: There was an article published a couple of years ago by the ERC about using conscious pain mapping or PAL, patient assisted laparoscopy for treating endometriosis. Is that an effective use or procedure to treat endometriosis and target the source of pelvic pain? Thank you.
Lone Hummelshøj: Would any of you want to be awake during a laparoscopy so that you can actually respond to whether it hurts when you are being poked?
Tamer Seckin, MD: Do you know what constant pain mapping is? ERC is publishing that. It is not their publication it is done in Canada. We know who that person is.
Audience Member: I know, but it is done by…
Tamer Seckin, MD: The constant pain mapping is not a way of diagnosing endometriosis well. Most of the time the patient tells you where the problem is. The visceral pain, unfortunately, cannot locate whether it is ovary or not, or a little bit low or up or we are right. The patient will tell you it is right or left. The patient will tell you if it is initiated with deep touch, deep contact pain during sex. The patient will tell you if there is painful bowel movement. The patient tells you 95 percent of the issue. The patient will tell you if it is ovulation. If it is ovulation always on one side, that is peritoneal that leads the doctor where to look. The patient will tell you if there is a light pain, where there is sciatica anterior or groin pain. In my opinion 95 percent of the time the patient tells you what they have. Conscious pain mapping is history, history, archaic.
Moderator: We have a question for Dr. Shin that came in prior to the event: Is a rectal exam suggested in suspected endometriosis diagnosis?
Ja Hyun Shin, MD: I may have a differing view than some other gynecologists. That is because my practice focuses on endometriosis as part of the whole pelvic pain picture. A lot of these women, like I said in my talk, over 90 percent of your diagnosis can be made just by the history. These women are already coming to the office extremely uncomfortable, they could barely tolerate a pelvic exam and will even less tolerate a rectal exam. The truth is the reason why you perform a rectal exam is to also check for nodularity, uterosacral nodularity but you really have to get in and up in there to be able to feel that sometimes. The truth is it does not really change my management because once I have made the decision to take a woman to the operating room I am going to be prepared for what level of severity of disease, extent of disease that she may have. So I would not necessarily change my management based on that exam. If I do not have to do it and make her more uncomfortable since it is not going to add more information to my management I do not usually perform it.
Audience Member: Good afternoon, I have three questions: what are we doing to train doctors to remove endometriosis properly with the blue water and the deep excision with cold scissors because I mean I am speaking with the top doctors at Yale and telling them about your technique and they are looking at me like I am crazy. I want to know what are we doing to train these doctors? How can – is there some type of law that we get passed so they have to learn this technique?
Tamer Seckin, MD: Thank you for hurting my feelings, I am trying! The bottom line is I think the push is going to come from you too. It is the patients that changed me. I learned from my patients and I am very honest about it. I could not find out, I could not find my way unless I did not follow their call, their discontent. I did not hear them. There was no endometriosis fellowship anywhere. We just proposed it, we wanted to do it. I started it. I want to do it yet it did not go so much so far. It will happen though. The changes are happening because of this meeting, because of many endometriosis centers have started. The key is, you are right, the key is recognition, understanding the visual differences. You cannot have an endometriosis surgeon doing deliveries or seeing 50 patients a day and then doing endometriosis surgery. There is no way. There is no incentive for them. Second, I do not want to complain but we are here. This is a hospital for example I do not see too many people from this hospital here except a very few friends of mine, maybe one or two. There are no residents here for example. They are busy with things because their obligation is to deliver babies. Departments have their other agendas and I cannot blame them. The issue with endometriosis is the same thing with doctors too, whenever we have challenges in medical environments that we look for answers it is always, “Oh, crazy patients, crazy doctors too”. I get the slack too. I will end up there but we will not give up. Let us put it that way.
Audience Member: Thank you. And my last quick two questions. I am sorry to throw so much at you. What are my rights about asking to have my surgery recorded? You know you get that response, “Well, we need to speak to the legal department about that”. And I want to know what is going on in my body. And my second last question is, what doctors, that you know of, that are experts in this area that take State insurance because there are a lot of women in lower income communities that cannot afford good insurance to come and see you or you and so what are we doing for those women right there and what doctors are available for them?
Tamer Seckin, MD: I am not going to tell you what doctors but the bottom line is, if the doctor said that he is not going to record the surgery then do not go to that doctor – period. That is why you have the right to choose, there are doctors who will record. I do not know too many but I am one of them. The second question is the most important question, there is an affordability issue. I am saying this in public I do pro bono or I do take patients who have challenging cases. They may be here or not. I have done cases without looking at their insurance but obviously the system does not allow that. That is why legislation has to change. I think the hospitals, it is the duty of the institutionalized structures to take this responsibility and not an individual doctor like me. We are doing our best to bring this to the public attention. It is the politician who feeds the money to health care and the health system that has 20 hospitals, 30 hospitals, big universities, they have to be structured within. For example we have a Johns Hopkins representative here, she is one of the specialists from there; they do take care of state insured patients. Thank you so much.
Monica Halem. MD: I just want to make a brief comment. I went to an original surgeon who did surgery on me and told me I had no endometriosis. I just did not believe it and was grateful to see Dr. Seckin who did a different type of procedure and found a lot of endometriosis in me. There are some doctors out there that capitalize on the diagnosis and let us do a procedure on you when they really do not specialize in that. You really want to seek out people that know what they are doing. I am unbelievably grateful for Dr. Seckin so that is out there.
Tamer Seckin, MD: You are a doctor yourself.
Monica Halem. MD: I mentioned that I am a physician and somebody did the wrong procedure on me.
Ja Hyun Shin, MD: I think all your questions are great and useful and pointing towards how do I find, where do I start this process of finding a surgeon who is capable and also obviously who will accept my insurance? Well, a good place to start is looking for someone who has been fellowshipped trained. There are not too many of them but several of them do train specifically for advanced excision of endometriosis and so you might want to look for someone who is fellowshipped trained by an AAGL program or SLS, this is the American Association for Gynecological Laparoscopists. I graduated from that fellowship, Dr. Patzkowsky did as well and also the Society for Laparoscopic Surgeons I believe are starting fellowships but the AAGL is a great resource for that to look for providers in your area. And part two of your question, all academic university hospitals do accept insurances as well and a lot of these providers are specialists and work there as well. But that might be a good start.
Julia: Hi, my name is Julia, I am a patient of Dr. Seckin’s. They say go to a doctor that takes insurance but the problem with that is, part of it is, they are not doing the surgery you actually need and the endometriosis will come back. I had a friend who had three failed surgeries before she finally went down to Atlanta to go see a doctor to get the same deep laceration surgery. I just had that recently and I feel better and I have not had any problems since I got mine. I suggest trying to find a doctor, like Dr. Seckin, who would do it for free. He did mine for free because I did not have the medical care
Kristin Patzkowsky, MD: I just want to say one comment – it is not the insurance issue, it is a training issue. When Dr. Shin and I, we did do fellowships, it was not even that long ago but when we did there was maybe, I do not know, maybe 20 fellowships and now there is like – how many fellowships in the AAGL? Double that at least? I think there is better recognition of the need for specially trained physicians that are trained in minimally invasive surgery, which naturally overlaps with endometriosis. I do not think it is an insurance issue, it is a competency issue and it is improving. It is definitely improving.
Nicole: I agree. My name is Nicole and I am a patient of Dr. Seckin too. He did surgery on me. I was diagnosed at 27 with endometriosis. Fast forward ten years later I am seeing a gastroenterologist and a neurologist. I had it on my femoral nerve and I was seeing a neurologist for it being on my ureter. It compromised my kidney functioning when my kidney went down to 12 percent. I was told to have an oophorectomy and hysterectomy after having my first child and I wanted a second one. I am here to tell you that it is possible after Dr. Seckin’s surgery. I was able to have my little one, my little Caitlyn is back there. She is four years old now and I have been asymptomatic. It is like nothing happened. I am so grateful for what Dr. Seckin did. But I am here just to make sure that anybody else who as endometriosis is asking the right questions. I was told I was as good as new after I had my first laparoscopic surgery but they lasered it. So when the pain kept coming back and I had about four or five of them and I was never told to go see a specialist who could remove it completely by doing excision. I think just doing your research and trying to make sure you are using your ____ benefits and that you are utilizing all your resources to make it happen because it is worth it.
Audience Member: Hi, I have actually kind of two questions in one. So let us say if there is a case of hypo____ of endometriosis with the symptoms, pelvic pain, back pain and MRIs and so on. If these symptoms go away but only the pain of intercourse remains would you advise to do the surgery just for that reason? Would it make any sense? Also, is it making sense to such a surgery just to check if there is no cancer?
Ja Hyun Shin, MD: Well, I think once you have already had surgery and you have a recurrence of symptoms you have to kind of start from scratch again. You do not necessarily need to jump into the most invasive treatment again. You can also trial, for example, physical therapy. If you are saying that the only discomfort you are having pain that you are having after having had all these treatments and the work up is just dyspareunia pain with intercourse that can be a muscular problem. That might not be addressed by surgery. You have to really target what is the symptom and where are you feeling the pain? There are all different kinds of painful intercourse and a provider has to be able to ask those questions. Is it pain before penetration so right at the _____, is it in the middle of the vagina or is it with deep insertion and penetration? Those three things tell me different things. If it is pain at the outside of the vagina that might suggest for example the vulvodynia vestibulitis; in the middle of the vagina it could be a pelvic muscular problem; and deep inside it could be an endometriosis. So you really have to know, be able to describe what kind of pain you have and also have a provider who can understand the different kinds of pain you have with intercourse. But I do feel that physical therapy, good physical therapy and that is so important, and just like not sending someone to any provider you also have to make sure you seek the help of people who are really trained in pelvic floor manipulation.
Audience Member: [no mic.]
Ja Hyun Shin, MD: So, if your symptoms is purely just dyspareunia and you never have any kind of other pain at all and that really is your only symptom, yes, I would trial medical management and physical therapy prior to taking you to the operating room.
Tamer Seckin, MD: It is a choice situation. If you wish to have laparoscopy you deserve to be diagnosed and treated. It is very simple. If during the exam the doctor examines you and pushes your uterus upwards or lateral and you are jumping and resisting that means you have disease there. You are not going to be treated with medicine. You need a laparoscopy. I am not going to say you need laparoscopy you will ask if you understand the issue you will say, “Please do my laparoscopy” then your laparoscopy will be done. It is a choice thing. Nobody can force you to have laparoscopy. You will decide it. Women have to understand their bodies. You have got to tell us what to do. We cannot push you to surgery or this treatment, that treatment. I cannot tell you to take Lupron or take this medicine or you should have surgery. We will never tell you you should have surgery. This is a benign condition and quality of life issue. You will tell us what you need. Thank you.
Audience Member: So many women face this issue with the impact of endometriosis on fertility and I am just curious how conversations about family planning enter into conversations with patients. Just a brief background, I am 24 and my doctor said, “Oh, try to have kids by the time you are 27”; a lot of pressure that I am sure a lot of women feel. I was just curious how you sort of advise physicians to deal with this and maybe patients too.
Kristin Patzkowsky, MD: I think again an important point is that a diagnosis of endometriosis does not mean infertility. Just because you have it does not mean that you will not be able to get pregnant. You cannot force yourself to have children by the time you are 27. I do think it is important to take into consideration that you have that diagnosis. Usually if I have a patient who I have diagnosed with endometriosis I will recommend suppression after surgery let us say to help to prevent symptom recurrence or delay the time to recurrence. I usually will recommend that once they do try to become pregnant instead of the typical definition of infertility is no conception after one year of trying so in a population of less than 35 I will say after six months, given that we know this history, then be proactive and go see an infertility doctor. A lot of patients often are dismissive without knowing – you do not know you have endometriosis. They just keep going on and on and on and the next thing you know it is three years and you are like, “well, I wasn’t really trying but I haven’t used protection for three years”. I just think you have to have a more proactive approach and I would definitely recommend medical suppression in the interval until desiring conception.
Moderator: Okay, let us give our speakers a round of applause and thank you all.