Patient Awareness Day
The Lifecycle of Endometriosis: From Diagnosis to Coping with Disease
Sunday April 17, 2016
Lenox Hill Hospital, Einhorn Auditorium
Audience Member: My question is for Dr. Lewis and then anyone else who wants to answer as well. In all the statistics that you provided about whether hysterectomy is very effective or not in the treating women with endometriosis, how many of those take other treatments into consideration? I mean, as you pointed out it is not like there is hysterectomy or there is not, there are so many options that intertwine and there are so many different combinations of treatment. How is that being studied effectively?
Michael Lewis, MD: That is an excellent question that I probably do not have the answer to. Again, it really has to do with each patient’s background and what they have been through. It is also a clinical decision whether or not – have you exhausted everything? And really have you been to a surgical provider who actually was able to evaluate you carefully in terms of your pelvis and identify endometriosis or not. I know some of my colleagues who for instance will refer specific patients knowing that they diagnosed endometriosis but they could not doing anything about it, they could not resect, they were not feeling comfortable. It is, again, really important to have that provider who can excise it, resect it.
Audience Member: Hello Dr. Kim. I am not a patient, I am also a doctor. I just wanted to bring up because I think people should be aware also with the birth control pills the 21/7 day may not be the best treatment, which I am sure that you know, and use also the newer low dose and very low dose pills with 24/4 day, higher amenorrhea rate, less breakthrough bleeding and sometimes better control of the pain. I know that you use that also. I just wanted to make sure that the patients were aware of that as well.
Jin Hee Kim, MD: Yes, I agree. There are so many different kinds and I think the important thing is also to know that there are if you – may have side effects from one it may be worthwhile just to even see if there are other ones out there. There are different types of progestins that you may be more sensitive to. Also, in terms of continuous use like we talked about, every pill can be made to take continuously as well, and there are other brands that are also sort of made. For example, I am sure you have heard of the Seasonique or Seasonale, which are three-month medications but you can really make any birth control pill into a continuous regimen.
Audience Member: This may be a shot in the dark but I am just wondering if anyone can speak to the use of Endovan for treatment after surgery?
Moderator: Could anyone speak to Endovan as a treatment after surgery? I think you are going to have to explain to us what it is. It sounds as if it is not a product that is necessarily approved for the treatment of endometriosis.
Audience Member: It is put out by a company for – they market it as for the treatment of endometriosis, fibroids, ovarian cysts, breast lump, etc. I just was curious.
Moderator: It sounds to me that it might be experimental for the time being. Melanie do you have a very, very quick comment on that?
Melanie I will be brief. I read about that also and I thought it was interesting. But I was not able to find any clinical evidence that showed its effectiveness as of yet. So, be careful, scams are out there also.
Farr Nezhat, MD: May I make a comment regarding birth control pills? It was an excellent talk regarding hormonal suppressive therapy after surgery. As was mentioned, the goal are several fold, one is to take care of the recurrence of the pain, recurrence of the disease and one area that you have to be very careful is recurrence of ovarian cysts, or chocolate cysts on your ovaries called endometriomas as you know. We know that it has been published in papers in the literature that the origin of the large endometrioma comes from the ovulation cyst. So, if you use any kind of suppressive therapy there should be adequate hormone to suppress the ovulation. It suppresses the ovulation. As long as the woman stays on that pill or injection she will not form endometrioma, so that is something that we have to keep in mind.
Jin Hee Kim, MD: I agree with that. There is also data to support that even if the cyst comes back, the endometrioma, it does come back at a smaller size. Whether that is also buying time – so I think it would be very important, especially if you have a cyst form of endometriosis to consider medical therapy post-op.
Harry Reich, MD: Is that considered that it is from ovulation cyst? Most of us always felt that endometriomas were from pelvic sidewall endometriosis where the ovary lies. As a surgeon we go in and we almost always invariably have to mobilize the ovary from the pelvic sidewall. Where most gynecologists fail is that at the end of the operation they do not excise that small, little area.
Farr Nezhat, MD: That is right because endometriosis on the pelvic sidewall or endometriosis of the ovarian cortex interferes with the function of the ovary. If that ovulation happens it does not go away, it is supposed to go away by the end of the month. If it does not go away it stays there and each month gets worse and worse. Gradually this lesion penetrates to the cyst. Based on how old that endometrioma is, when we operate some of them are easy to remove and some are very difficult to remove.
Audience Member: Are there situations in which a hysterectomy can worsen chronic pelvic pain?
Michael Lewis, MD: In terms of the route of where a hysterectomy is performed – if you are doing an open abdominal surgery you are going to have more scar tissue and adhesions following the surgery and that could actually exacerbate your pelvic pain; also, whether or not the hysterectomy was done for the right reason. Like I said, you may have endometriosis or a minimal amount of endometriosis that may not have been contributing to the pelvic pain. Whether it is also versus doing it through a minimally invasive route in terms of robotic or laparoscopic you are going to see less scar tissue adhesions and therefore hopefully improvement of the pain post-operatively.
Harry Reich, MD: Most endometriosis hysterectomies should be preceded by excision of the endometriosis before the hysterectomy. If you do not do that, typically, if you use some of these devices that are on the market to delineate the junction of the vagina with the cervix you almost invariably will leave the endometriosis behind and do what is called an intrafascial hysterectomy, which should never ever be done for endometriosis.
Audience Member: My question is on pain management. Seeing that endometriosis sufferers usually take a lot of opiates and lots of ER rooms are not allowing such narcotics anymore, is there any research on CBD treatment as far as medical marijuana for endometriosis?
Moderator: I would like for Dr. DeGregoris to answer that question please.
Gerard DeGregoris, MD: Hello everyone, I am Gerry DeGregoris. I am an anaesthesiologist and pain management doctor. I caught the first part of the question really well and CDD treatment? CDD what does that stand for?
Audience Member: CBD.
Gerard de Gregoris, MD: Common bile doctors is what that means, does that mean something else?
Audience Member: Unintelligible.
Gerard de Gregoris, MD: Got it, yes. Other derivatives and other components of the cannabis plant, is that correct?
Audience Member: Not necessarily getting you high.
Gerard DeGregoris, MD: I must admit, I am not an expert on cannabidiol and cannabis research. I have seen articles that people are experimenting, not so much in New York but in other states. It is difficult because the federal government has not really gotten behind that yet. So the short answer to your question is that there is a little bit of research going on of the various components that can be distilled from the cannabis plant. I am not aware of any specifically addressing endometriosis pain but there are some studies going on for other very specific diagnoses, things like glaucoma, cancer pain, HIV pain, things like that. Some research is there but certainly in its infancy. Does that somewhat answer your question?
Moderator: Thank you, we have another question over here.
Audience Member: I actually had a question about the endometriomas. I was diagnosed first when I had a 10 cm endometrioma. I never knew I had endometriosis or what it was. They tried removing it and then it grew back again to 8 cm. Then they decided to remove the ovary and fallopian tube. I am having same issue on the other side now. I tried the hormonal therapy and it just continues to grow. I know you said that that was one of the treatments, I was just wondering why it may still be growing.
Farr Nezhat, MD: Again, you go back to what I was describing, the origin of this endometrioma comes from the ovulation. Most possibly, after your surgery, there was a small endometrioma on that ovary which was not removed or you were not put on suppressive therapy. Now you have one ovary and my suggestion to you is find a surgeon that is capable to remove that cyst very carefully so it does not damage the rest of the ovary and then put you on suppressive therapy until you are ready to try to get pregnant. The other thing, if you could financially afford it, you may consult with a fertility specialist to freeze your eggs.
Audience Member: I have already done that.
Farr Nezhat, MD: Good, that is great. Because you are young you do not want to lose the remainder of your ovary function, osteoporosis, etc. Unfortunately a lot of our colleagues and physicians are not experts in resecting the endometrioma properly, especially if they do laparoscopy because laparoscopy – these days some people think the robot is magic and they advocate about robotics – whoever does the surgery should be a skilled surgeon, familiar with endometriosis to properly remove it and then put you on suppressive therapy to prevent the endometrioma coming back.
Melanie: Just coming to it from a standpoint as being a patient, excision, it truly is the gold standard for treatment. I am a patient of Dr. Seckin, I went through all of the medical suppression beforehand with the birth control pill, the Depot Provera, Danazol, Lupron, deepening of the voice, the hair growing. I had more hair on my face I think than my husband. I went through a lot of the mood swings. I really found relief once I had the excision surgery and it was done properly and I have not needed any suppressive therapy afterwards.
Nancy Morris: My name is Nancy Morris and I just want to say, I am actually probably here today on this stage because of two people here, Dr. Reich and Dr. Seckin who have both, I am sure, saved my life over the past. I had surgery, nine hours with Dr. Reich in 1999 and nine hours with Dr. Seckin last year, which involved my bowels and my ureter and my bladder and my arteries and my veins and if there is one thing that I can say for everyone to take away is from this day today the support that Endofound is giving everyone with awareness is that, alluding to what Abbey was saying about talking to your doctor, getting to an expert is so important, do your research. In these days today we have to be our own advocate, which is why everyone is here today to fight for ourselves, for our health care, for our families, for our sisters, for everyone out there who has this disease where people really do not know what it is until in maybe the last ten to 20 years getting more and more information out there. But I think the most important thing is to do your research and talk to your doctors and get to an expert, like you were saying, to have excision. I chose to have a hysterectomy with Dr. Seckin last year for my adenomyosis and I feel great. I feel like a different person. If it was not for Dr. Reich I never would have made it to Dr. Seckin and I probably would not be here today. Please get to expert excision as fast as possible. Thank you.
Moderator: Thank you and I think Julie just has a quick comment as well, and then we will go back to questions on the floor. I know you are sitting out there waiting to ask them.
Julie: Hi, I just wanted to share my point of view on hysterectomies. I have been battling endometriosis for ten years now. I had a hysterectomy when I was 17 years old. I am a fairly recent patient of Dr. Seckin and if I had met him earlier on that probably would not have happened so my main mission is to just advocate for the future girls who are undergoing, in some cases, unnecessary hysterectomies because it did not help in my case. It actually came back years later worse than ever and I had to take a leave from law school. But I am doing great now, I am a year post-op. I just want to advocate that for unnecessary hysterectomies there has to be a change for that and correct information needs to be out there. Thanks.
Moderator: We just have a final comment on this topic.
Harry Reich, MD: It should be for you out there a hysterectomy is never indicated for endometriosis, endometriosis is not cancer. I think Farr will tell you cancer requires hysterectomy. Sometimes it requires – it is necessary to look and look and look and look till you find a surgeon who will not do the hysterectomy. They do exist. Sometimes you have to go out of the country but they do exist, right Farr?
Farr Nezhat, MD: Exactly and then unfortunately if you decide to have a hysterectomy, you know there are two types. They are called total hysterectomy or supracervical hysterectomy and sometimes if they leave your cervix behind, as Dr. Harry Reich mentioned, some endometriosis is behind the cervix in the ligaments. If they leave the cervix behind you will continue to have pain. Please educate yourself because supracervical hysterectomy or total hysterectomy it does not have anything to do with the ovaries. You are talking about the uterus and the cervix. Then, if your physician offers to you to remove the top of the uterus and leave the cervix behind you may continue to have pelvic pain, back pain and pain for intercourse. Please educate yourself about these two types.
Moderator: Thank you, we have a question down here.
Audience Member: If I could piggyback on the questions about the endometriomas. If there is a history of endometrioma that includes removal of an ovary and then there is excision surgery, what is the likelihood that an endometrioma will develop on the remaining ovary, and is suppression treatment necessary after excision?
Farr Nezhat, MD: In my opinion if the patient does not want to get pregnant and she could tolerate suppressive therapy like birth control pills definitely it should be used because endometriosis is a very peculiar condition. The same way that the first ovary formed an endometrioma the other ovary could develop an endometrioma because it could be microscopic endometriosis and the peritoneum that could get involved with the ovary and then form an endometrioma. If endometriosis is completely clean you could watch. I check my patients every four months with ultrasound to see if they are forming a cyst. Not to leave her alone to come back five years later or three years later with beginning endometrioma.
Tamer Seckin, MD: I just want to have a comment on endometriomas for once second, if you allow me. In my opinion endometrioma surgery is, and can get, as difficult as any endometriosis surgery because you are trying to preserve the eggs that you do not see. Many times when endometriosis surgery is indicated that ovary is so much smooshed and crushed, the demarcation line between the healthy ovary and the cyst is not very healthy. It rips away the blood supply of the ovary. It is very crucial to work with someone who really pays attention to that. Second is doctors are at that line, because it bleeds a lot, there is a quick tendency of coagulating with electricity. That coagulation of blood control for blood control purposes cooks eggs. Not only cooking it basically fries them so it is egg frying. In other words, doctors should not cook the ovaries after the cyst is removed. There are, on many occasions, there are multiple cysts that are easy to miss when a cyst gets that big. Second small cyst often gets left behind, easy to leave behind so that is another reason cysts recur. The most important thing is when the ovary is at that magnitude, that bigness, is removed off the cyst, it has to be reconstructed very finely with very fine suturing. It should not be again electrocuted. Reconstruction should be done like a plastic surgery. In other words a new ovary should be constructed, not like smooshed and crooked way. It has to be kept away from the anti-ovarian cervix pelvic wall, suspended maybe 24 hours before it is let go. We do that suspension sutures.
Moderator: I expect most of you did not come here for a cooking lesson. We have another question here in the middle.
Audience Member: Hi, good afternoon. My name is Patricia, I wanted to know as far as the surgery is concerned I want to know about scar tissue and lesions. After I had surgery in 2014 I had a lot of pain after the surgery. That lasted longer than a month after the doctor told me that I would initially feel. I want to know if the scar tissue usually lasts longer or was it possibly the endometriosis after because I am currently still going through pain now. And I have one more question, any doctor, as far as the cannabis is concerned I have taken depots, ____, Alesse birth control pills and I wanted to know is there anything patients can do to get cannabis involved with endometriosis because I personally feel like it works.
Moderator: Thank you. So let us just deal with the scar tissue and then can we address the cannabis question in the next session where we are going to be talking a little bit more about pain and pain management strategies. Dr. Lewis is going to talk about scar tissue.
Michael Lewis, MD: In regard to the scar tissue it depends on, in terms of the technique that the surgeon’s using. Obviously minimally invasive will have less scarring than an open procedure but also the specific technique and the amount of blood loss that occurs during if they leave behind a lot of blood that can cause some inflammation. But also it depends on the actual patient itself where some patients will develop more scar tissue than others. Doing laparoscopic surgery on a patient who has had four previous C-sections then you would think that they would have so much scar tissue but they had none. Of course there are others who have had one previous surgery and they have a lot. It is multifactorial. It depends on the patient, depends on previous surgeries and the technique that the surgeon uses. It is not just one simple answer I think.
Moderator: We have three more questions and then we are going to press onto the next session.
Audience Member: This is basically in regard to the hysterectomies. I have had multiple laparoscopic surgeries, a hysterectomy in 2012 and still feeling some pain. I have also had another laparoscopic surgery post-hysterectomy. I was curious to know why my endometriosis keeps growing back. I do not believe I have any more of my ovaries left so I am trying to figure out what is feeding the endometriosis and possibly making it re-occur.
Harry Reich, MD: Endometriosis does not grow back. It persists. If the surgeon did not remove it during the original surgery it will give the impression that it grew back but it has been there all along.
Moderator: Thank you that was a lovely, short and concise answer. We are back to the you have got to remove all of the disease otherwise it will likely persist. We have a question here at the front.
Audience Member: I just have a question about the mechanism of ovulation, especially in regard to the Mirena and the women who no longer get their periods when they have the Mirena. If endometriomas come from follicular cysts, which is what I am hearing Mirena I know often has an increased incidence of follicular cysts but also does it stop ovulation – how does it all work together? Is that a clear question?
Moderator: That is a correct question.
Jin Hee Kim, MD: It is true that one of the possible side effects of the Mirena is that it increases your chances of cyst formation, not necessarily endometriosis but follicular. Progestin only treatments do not necessarily stop ovulation like the combined estrogen/progestin. That partially may be responsible for that issue.
Audience Member: Unintelligible.
Jin Hee Kim, MD: It is hard to say but, possibly.
Farr Nezhat, MD: You could have sub-ovulation. If I decide to put a Mirena IUD I always do ultrasound first to be sure there is not already no small endometrioma on that ovary. If you have the Mirena IUD again, I do not leave my patient to come back in two years. I see them every six months to see how the Mirena IUD affects that particular person. Because you have to remember the Mirena IUD has a set dose of the hormones but different people have different body mass index. It depends how much medication is distributed to the body of that person. That is the way I follow my patients.
Moderator: Thank you. We have one final question.
Audience Member: In regard to the hysterectomy when you said to remove the cervix, what is the difference of keeping your cervix, and you did say there could be some endometriosis behind that versus removing it, does it grow back and what is the difference with intercourse if it is there or not? If you remove it are you open to more bacterial infections and things from having just regular intercourse? And the feeling of intercourse after that?
Harry Reich, MD: I am just going to make a quick comment then let everybody else talk about this subject. I do not believe I have ever done a supracervical hysterectomy in the face of endometriosis. I believe, from my viewpoint, I always separate the uterosacral ligaments and excise anything that is attached to them so that I do not keep them – you hear that hysterectomy has been sort made into all kinds of different operations now but the so-called intrafascial hysterectomy where the ligaments are left attached to the cervix I do not think is adequate for endometriosis patients.
Tamer Seckin, MD: One more comment, this is critical. I think the audience here should be warned about the complexity of endometriosis surgery when it involves multiple organs. When the uterus is involved with the right indications hysterectomy should be done, number one. When adenomyosis is present and the pelvis is involved, that is a real challenge. There is usually deep bowel disease. Either there will be a concomitant bowel segmental bowel resection or you are going to go into the bowel and fix it. There will be ureter involved and these surgeries I am telling you at least five, six if not more five to 15 percent more morbid complicated surgeries. There are complications with these surgeries. In fact, some of the patients may tell you “it’s my complications with my surgeries” but it is part of the deal. Would you like to elaborate how much you guys suffered?
Panel Member: I had a hysterectomy with Dr. Seckin when I was 40, which was three years ago. From the age of 15 to 35 I had eight laser laparoscopic laser surgeries. It was not, my endometriosis was not excised. We never really got a chance to talk about what you found when you did my surgery, if there was a lot of scar tissue but I love the comment that endometriosis does not grow back. My endometriosis was never removed properly. It was just lasered and covered over with scar tissue and then, you know. Even being a registered nurse I did not know any better. When it came time for my hysterectomy I wanted the best because for personal reasons, and some failing medical history, I did not want my ovaries removed. I wanted the best chance to not have recurring endometriosis so I found Dr. Seckin online and showed up at his office. Unfortunately I was in the less than one percent of women who have that vaginal cuff where the cervix is removed and then it is sewn closed. That opened three different times over a year and a half. So I had subsequent surgeries, abdominal infections and hospitalizations. Despite all that I do not have endometriosis anymore. I went to the best and he removed and excised with my hysterectomy three years ago. He removed all my endometriosis and so, despite what I went through with the complications which I feel was due to all the scar tissue I had from inappropriately lasering – just my opinion. But the beauty of it is that I do not have endometriosis, it has not come back and I now am pain free.
Moderator: That is wonderful to hear. I have promised this lady one last question, please keep it short. Dr. Reich wants to ask a question can I ask those who will respond to it to keep it really brief, thank you.
Harry Reich, MD: I do not know the answer. In my practice I never ordered MRIs. I was just talking to somebody back there and everybody seemingly has an MRI. Now MRI is valuable to diagnose adenomyosis, which is endometriosis inside the muscle of the uterus but for endometriosis outside of those areas why is this all of a sudden MRIs ordered that cost the patient quite a lot of money?
Jin Hee Kim, MD: I agree with you that MRI is very expensive and I do believe that it is not necessarily the standard imaging because as we all know endometriosis it is not detectable unless it is the mass form. If it is an endometrioma you can probably get that by ultrasound. I would say that probably the one area maybe would be a, of course you do your rectovaginal exam and if you feel that rectovaginal nodule, if you want to know where the relationship it has to the bowel and the size, location, etc. I think that would be one area of use. I do not know if anyone has any other suggestion.
Farr Nezhat, MD: Because I am an oncologist I have to put my oncological hat on. Beside adenomyosis and also sometimes if there is a type of ovarian cyst on the ovaries an MRI could be more useful to find the characteristic of that cyst. MRI, if you write to the radiologist exactly what you are looking for a parametrium. Parametrium is a tissue next to the cervix. We use it for cervical cancer to see if the cancer has spread to the tissue adjacent to the cervix. ___parametrium or uterosacral cardinal ligaments. Sometimes you cannot feel it and you cannot evaluate it because especially women with endometriosis have pain, you do not want to hurt them. An MRI could be useful to evaluate the extent of the disease so when you operate you excise that area. That is the only area that I order an MRI.
Moderator: I think the closing message here is that the use of various tests in endometriosis needs to be used selectively and appropriately. Thank you very much to the panel. We are going to call on the doctors again after the next session, so do not go away.