Endometriosis and Treatment of Extreme Cases

August 25, 2006

OBGYN.net Conference CoverageFrom American Association of Gynecological LaparoscopistsAtlanta, Georgia, November, 1998

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Roberta Speyer: Roberta Speyer: “This is Roberta Speyer, Publisher of OBGYN.net reporting from the International Congress of Gynecologic Endoscopy. This is the American Association of Gynecological Laparoscopists 27th annual meeting, and today we’re interviewing Dr. Grace Janik. Dr. Janik is Associate Clinical Professor of Obstetrics and Gynecology at the Medical College of Wisconsin; she’s also the Director of the Reproductive Specialty Center. Dr. Janik, please tell us a little bit about what’s going on at the conference here.”

Dr. Grace Janik: “I’m on the Board of Directors for the AAGL and with that I’m involved in all aspects of setting up the conference and future planning for the AAGL, and so far it’s been an excellent meeting. There’s a lot of new innovative techniques that are being reported.”

Roberta Speyer: “What have you found particularly interesting? I know you were at the presentation this morning on the transvaginal hydrolaparoscopy that’s been developed by Professor Gordts, and you were participating in that and you had gone to Belgium.”

Dr. Grace Janik: “Yes.”

Roberta Speyer: “Could you tell us a little bit about that experience?”

Dr. Grace Janik: “Transvaginal hydrolaparoscopy is a new technique to evaluate the cul-de-sac with the ability to use no anesthesia and have a panoramic view of the entire cul-de-sac which should very much change the future of diagnostic laparoscopy. From this point on, we should only be doing laparoscopies for patients that we know have disease rather than just for evaluation. Forty-percent of fertility patients have negative laparoscopies, I mean you go in, they go through surgery, and you find nothing.”

Roberta Speyer: “So this is another avenue for exploring and identifying early on especially in cases of endometriosis. I know it has some implications there, and you’re a specialist in that. Could you tell us a little bit about how you see THL would be effective in diagnosis of endometriosis?”

Dr. Grace Janik: “Often times there’s a delay in diagnosis of endometriosis because people wait until pain is to such a severity to warrant the risks of surgery. With transvaginal hydrolaparoscopy, you can make this evaluation at an earlier stage and appropriately triage patients to surgery for resection or possible medical management with birth control pill therapy knowing what their diagnosis is.”

Roberta Speyer: “So how long do you think it will be before we see this procedure is more common place?”

Dr. Grace Janik: “The procedure is very easy to learn especially for reproductive endocrinologists that are used to passing needles through the back of the vagina. Most technologies take some time for dissemination and for comfort, this one is particularly easy to use so it may be more quickly, possibly a year to two before it’s a wide spread accepted technique.”

Roberta Speyer: “So in your opinion, it’s important for a woman that has endometriosis or because of her endometriosis or other problems suffering infertility problems should seek out a reproductive endocrinologist?”

Dr. Grace Janik: “I think it is, in that the technology is changing so rapidly in these areas that to get the most effective treatment usually people who subspecialize in this field tend to spend more of their time and education and can get to the heart of the matter more quickly.”

Roberta Speyer: “You said people who specialize in this, so shifting gears on this, I’d like to talk a little bit about that. Not to dwell on it but it is rather obvious that here at the conference there are not that many women that have taken up laparoscopic surgery.”

Dr. Grace Janik: “I think that’s true in that many of the initial pioneers were men mostly because there were very few women in medical school in the early days. The residents coming through now are a high percentage of women especially in obstetrics and gynecology but in the educators and the leading people, it’s a high percentage of men. I think it’s a difficult world to be accepted into, and I think that sometimes that’s intimidating for women to go into the academic arena and to present and compete on this level.”

Roberta Speyer: “Do you see women that are coming out of residency programs now? I know there’s a majority of folks coming out of obstetrics and gynecology residency programs that are women but how do you see it as far as going into laparoscopic surgery and reproductive endocrinology? Do you also see that trend in that specialty?”

Dr. Grace Janik: “Yes, there’s a whole wave of people coming up; the new talent of the future will be a high percentage of women.” 

Roberta Speyer: “That’s wonderful.”

Dr. Grace Janik: “The discrimination of past eras is gone. These women are very good as surgeons, good endoscopists, very committed to obstetrics and gynecology, and a high percentage of them.”

Roberta Speyer: “Tell me a little bit more about the treatment that you’re doing and the things you’re doing in endometriosis and what you see as the up-and-coming therapies that are showing the most promise.”

Dr. Grace Janik: “I think we’re realizing that endometriosis is primarily a surgical disease in that it causes fibrosis and scarring, and that’s why medical therapy has universally been unsuccessful. The problem is the areas of scarring tend to be in critical areas that people are uncomfortable operating - over the bowel, the bladder, the ureter, and they don’t want to do harm at their surgery and that’s one of our tendencies to first do no harm. But for the endometriosis patient, by leaving this disease behind, what’s happening is they’re not being cured and they have repetitive laparoscopies without resolution of their pain. They have hysterectomies done which really aren’t removing the disease so you’re removing the organ not involved rather than the fibrotic endometriosis in these critical areas. So in my perspective, one of the key things that are happening with endometriosis surgery is what I call “radical excision” of endometriosis. No matter where the disease is, you carefully dissect it off the critical organs to completely remove it to achieve a pain-free environment. And for patients who want to retain their fertility, this is preserving the uterus and the ovaries which are usually not to be the involved primary organ of difficulty.”

Roberta Speyer: “In order to do this, you have to be very skilled.”

Dr. Grace Janik: “You have to be comfortable operating with the bowel because the area back behind the bowel - the rectovaginal space - is one of the key places where the disease is located. So you have to be prepared to open up the rectovaginal space, to resect the bowel if necessary, to open up the bladder and repair it, even to resect a segment of the ureter and reanastomose it. All these things can be done laparoscopically with suturing techniques and very meticulous dissection.”

Roberta Speyer: “So when you go in to do surgery, do you customarily do a bowel prep?”

Dr. Grace Janik: “On almost all my patients.”

Roberta Speyer: “Yet that’s something that we see discussed very heavily on OBGYN.net among women that have the experience where they go in to have surgery and then endometriosis is found in a place that cannot be operated on because they haven’t been prepped, and they go back again. What types of advice would you give women when they’re seeking surgical answers to this disease? How do they know who to go to? How do they know what types of questions to ask?”

Dr. Grace Janik: “I think this is a very difficult thing for women but the problem is many obstetricians and gynecologists don’t even realize the necessity of doing a radical excision for endometriosis. So even the knowledge based in the obstetrical and gynecologic community is still being disseminated. So from a patient’s perspective, it’s very difficult to understand who really knows how to do this type of dissection. In the country it’s really quite limited the number of people who do these severe cases, and as a patient, you don’t really know the level of severity that you have. So I think some of the key questions a patient should ask is how many cases someone has done, what level of endometriosis they feel uncomfortable with, and do they do bowel work and ureter work? If you’re having problems with pain with intercourse or pain with bowel movements, these are key hallmarks of rectovaginal involvement, and if you have these hallmarks, you should have a surgeon who’s prepared to deal with them and a bowel prep prior to going into surgery.”

Roberta Speyer: “Is it not uncommon in your practice - I know I’ve talked to some other physicians that are very well known in this field that it is not uncommon in theirs - to have women travel quite a distance to have their surgery. Do you have this?”

Dr. Grace Janik: “Yes, we have quite a few patients that come from overseas and all around the country to have this surgery. Most of these patients have had multiple surgeries and are not cured so that’s why they’ve gone to extremes. They’re seeking information in order to get definitive surgery.”

Roberta Speyer: “So would you want to share some of the names that are in the Association that are the physicians that deal with this more severe form?”

Dr. Grace Janik: “There are a number of people who lecture on this, Dr. Harry Reich, Dr. David Redwine, the Nezhats, Tom Lyons, my partner Charles Coe and myself. There may be others that are not coming to mind but those are the key people that do this work.”

Roberta Speyer: “We’ve had some very good articles written by many of the physicians that you’ve mentioned and the opportunity for a woman on OBGYN.net to read about that. I certainly would hope that we could ask you to submit.” 

Dr. Grace Janik: “Sure, I’d be happy to.”

Roberta Speyer: “Because I think it’s also very interesting. It’s very difficult for women that have this disease to even find a woman physician that deals with the severity of this disease. A lot of them would like to know that there are some out there and that there are more coming out of school and that they’re taking an interest in this. I do think there’s almost in some instances, and you probably noticed this too, a feeling in the community of the patients that this was a disease that went undertreated or underdiagnosed for a long time.”

Dr. Grace Janik: “I’m sure it has been and it still is being underdiagnosed.”

Roberta Speyer: “And justifiable so, they feel frustrated.”

Dr. Grace Janik: “They do, and it’s been a frustrating disease for physicians also. They see their patients not getting better, they feel frustrated, and they look at it as a disease that always comes back. So it’s not necessarily a lack of compassion or will on the physician’s end either, it’s a lack of understanding of the pathology of the disease and lack of understanding the need to operate in these very crucial areas.”

Roberta Speyer: “Do you see the possibility in the future of treatment for endometriosis being actually a subspecialty unto itself? Would you like to address that?”

Dr. Grace Janik: “Yes, it may be. Reproductive endocrinology has been one of the pace setters for advanced endoscopy because of the work with microsurgery as a spin-off, but what’s happening now in the era of IVF is that many reproductive endocrinologists don’t necessarily have the leading surgical skills. So it’s kind of falling into a specialty onto it’s own of endoscopy, and there’s talk of having a special fellowship for endoscopy and honing in these skills in a more formalized way. I can see that happening in the future.”

Roberta Speyer: “It seemed apparent at the World Congress on Endometriosis this year in Quebec with the formation of the actual World Endometriosis Society as a professional organization that there is a tendency within your peers to be moving in that direction. I think a lot of women are very interested in that because they are very much looking to find a way to know how the physicians are accredited, what type of training they have, and how they as consumers can find the best care. These are really good hopes for the future, and I think people are very heartened by them but as it stands now, just leave us with your final thoughts of what you would recommend for a woman that is suffering from this problem. She’s in some little town somewhere, she has an HMO, what does she do and how does she make sure she’s getting the best care? Give us the best advice you can give at this point in time.”

Dr. Grace Janik: “I think you have to look at what the disease symptoms are, and if it is dyspareunia or pain with bowel movements, you need to seek a specialist that’s comfortable in that area. If it’s a problem of painful periods, it may not be that complex of endometriosis and to have surgery in a more local environment may be acceptable. But you need to ask some critical questions of the number of surgeries done and experience level degrees of disease. I think you need to be an informed patient of what kind of experience your surgeon has.”

Roberta Speyer: “You really have to take some of that responsibility onto yourself to get the care.”

Dr. Grace Janik: “I think so.”

Roberta Speyer: “To be willing to travel, and to be willing to keep going again and again until you find the right person.”

Dr. Grace Janik: “Right, and if you have your first surgery and you’re not improved, then maybe that’s time to move on also.”

Roberta Speyer: “Dr. Janik, thank you very much for taking the time to talk with the OBGYN.net readers.”

Dr. Grace Janik: “You’re welcome, thank you.”

Roberta Speyer: “Thank you.”

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