A call for centres of excellence to treat endometriosis

EndometriosisZONE.org
A call for centres of excellence to treat endometriosis





Drs. Charles Koh & Jim Tsaltas interviewed by Deborah Bush QSM
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Deborah Bush QSM: Good morning, my name is Deborah Bush and I’m the Chief Executive of the New Zealand Endometriosis Foundation. I’m also on the International Advisory Board for Endometriosis Zone. We’re at the 9th National Women’s Hospital Minimal Access Surgery Course, and it’s being held at the Hilton Hotel in Auckland, New Zealand.

I’ve got with me this morning Dr. Charles Koh. Dr. Koh is from the Milwaukee Institute of Minimally Invasive Surgery, and Dr. Jim Tsaltas, who is head of Gynaecologic Endoscopy at the Monash Medical Centre. He’s also Director of ECCA, which is the Endometriosis Care Centre of Australia.

Welcome gentlemen. This morning we’re going to discuss bowel and urinary tract endometriosis. There was a lot of discussion on this yesterday, and some of things arising from the discussion, so, with that in mind, Dr. Koh, would you like to start the conversation and tell us your views about the subject?

Dr. Charles Koh: I was very happy to hear Jim talk about focusing on treatment of endometriosis, and I think we are among a growing group of people who are interested in treating the disease rather than removing the uterus, and the ovaries. With regard to urinary tract endometriosis, let’s say the ureter, past literature has emphasised removing the ovaries, or doing a hysterectomy at the same time, in order to get a permanent cure.

This is absolutely not true. With the laparoscopic approach today, the disease can be so clearly demarcated provided you’ve learned how to be a good dissector. It is eminently treatable without sacrificing any female reproductive organs. What do you think about that, Jim?

Dr. Jim Tsaltas: Charles, I would agree 100% with that concept. I think one of the challenges that we face is how do we encourage, and educate, other gynaecologists seeing and understanding the disease process, and how do we start them along the pathway of excising endometriosis, which we currently believe is the gold standard in treating infiltrating endometriosis.

One of the concerns that I have, and you may have some ideas on how we can improve things, is that we may see a patient who, as we saw at the conference here, the patient has had a diagnosis made of infertility and endometrioma, and the previous laparoscopy had shown just a few adhesions in the Pouch of Douglas. Now to you and I, that raises the suspicion that is this disease a lot more extensive than just a few adhesions in the Pouch of Douglas, because that shouldn’t really just exist for no reason. When we did the laparoscopy, this patient had extensive endometriosis actually stuck up right on the back of the cervix at the utero-cervical junction. What we were faced with was a much more complex procedure to actually remove the endometriosis.

How do we improve the diagnostic skills, let alone the excisional skills of our colleagues?

Dr. Charles Koh: I think we have to probably accept that not everybody is going to be an endometriosis surgeon, and that this is really a specialised treatment. Centres of excellence have to be developed. I think, as importantly as that, while fellowships and training is happening, the general education for the gynaecologist must bring them away from this idea of removing reproductive organs, as away to treat, let’s say the ureter.

Another thing I would make a point about is that if you combine a gynaecologist and a urologist, you do not make a specialist endometriosis surgeon. It is totally a different breed. A urologist may tend to mislead, unintentionally, the direction of surgery. So I think education of the general gynaecologist, but more importantly, of the consumer – of women with endometriosis – that this is treatment that does not have to castrate you, I think that’s paramount. Then they will seek out the appropriate surgeons.

Dr. Jim Tsaltas: You raise the issue about the consumer, Charles. In our group, when we looked at our first 300 patients that were self-referred to our clinic, once we set up our endometriosis clinic with Professor Peter Maher and Carl Wood in Melbourne, we were supported by a hospital that obviously had a focus on endometriosis, and also a vision in helping women with endometriosis. We decided to go directly to the consumer, and we tried to raise awareness about symptoms.

Interestingly, of the 80% of women who presented and walked in the door, and said, “I’ve been on your website, I read the book, I think I’ve got endometriosis” were actually correct: they did have endometriosis!

I think if we can educate the women to actually be more proactive with their own health, in seeking out appropriate centres, I think that can only be a good thing. I don’t view it as elitist, and neither do you. I think if you had physically the time to train as many gynaecologists as possible in this area, you would. But ultimately, you can only, in your practice in a lifetime, train “x” number of people, and you hope that you can then direct the patients to your colleagues around the States.

Dr. Charles Koh: Yes, that’s absolutely true. A lot of dedication and sacrifice is necessary for the budding endometriosis surgeon to attain proficiency. That is something that some fellows, or gynaecologists in general, are not willing to do and that is absolutely fine, as they can operate up to their limits and refer to a specialised endometriosis center.

With regard to the diagnosis of urinary endometriosis, there are some fallacies. It is more commonly present then appreciated, and it has been shown that in women with more severe endometriosis (with severe symptoms) up to 20% to 40% have abnormal IVPs. It’s my practice that whenever severe endometriosis is suspected, with ovarian cysts, or some nodularity, to do an IVP beforehand so you are not surprised at surgery.

Dr. Jim Tsaltas: That would certainly be my practice to run an ultrasound and an IVP. If you are concerned about symptoms, but can go into the operating theatre with as much information as possible, then you can probably perform a more appropriate procedure. And you can also counsel the patient about the potential risks of the procedure beforehand, so that when they come out they have no surprises. If you have to excise a segment of the ureter and re-anastomosis then they won’t find that surprising.

Dr. Charles Koh: What we have been pursuing, and I am happy to see it reiterated by Jim and all the others at this conference, is that ureter endometriosis can be treated by excision and anastomosis quite readily by laparoscopy, and procedures like implantation may not be necessary. A urologist has an automatic reflex to just cut the ureter above the section of the endometriosis, and re-implant into the bladder, and the disease is still there. There will still be pain, and the next step is hysterectomy. I’m a real advocate against hysterectomy and adnexectomy (castration).

Dr. Jim Tsaltas: I guess those concepts can be applied to bowel endometriosis, and your opening comments, Charles, were that the treatment was hysterectomy and bilateral salping-oophorectomy, and that you used to peel the rectal disease and the rectum off the back of the uterus. You then do a hysterectomy and the poor woman was still left with a potentially obstructive significant lesion in the rectum, which then infiltrated back onto the vault. I think that dealing with the endometriosis on the rectum as a separate issue to any hysterectomy, or ovarian surgery, is paramount.

Dr. Charles Koh: You know something just struck me as I’m thinking; why isn’t there more widespread dissemination of how endometriosis ought to be surgically treated? I think the answer is: only gynaecologists who perform laparoscopy, and are very interested, know this because it is the laparoscopic gynaecologist who has unfolded this new realisation of pathology, and how to treat it. The gynaecologist by laparotomy has not changed. The textbooks have not changed. That’s 90% of gynaecologists; which is why there is perpetuation of this idea that you can do a subtotal hysterectomy, leave the disease behind, peel this, etc. That’s what we were taught ages ago, and that has not changed. The change is because of the interest in laparoscopy. So those who are not laparoscopists, are not aware of this change in surgical management.

Deborah Bush QSM: Yesterday you talked about a paradigm shift. Would you like to elaborate on that further?

Dr. Charles Koh: The paradigm shift is precisely what we’ve been alluding to indirectly. The classical theory of endometriosis is Samson’s Theory with retrograde menstruation. Therefore it makes the physician feel helpless, and the woman feels helpless, that there’s nothing that you can do. Because it is going to come back next month when you menstruate, and until we remove that organ it’s just going to keep coming back.

In truth, the repeated endometriosis surgeries that were performed were because the disease was totally missed. The deep disease has always been missed. And the little, little disease is taken care of, and so it is not recurrence – the disease never went away. So it is persistence. The paradigm shift is now that we can go after the disease, and laparoscopic access has a lot to do with it.

You could never do the same operation with laparotomy. We are now able to do a more complete resection. Also with education, and the ability to treat bowel disease laparoscopically, ureters, bladder, nothing is exempt. It can be treated. We now find that a hysterectomy and oophorectomy is not necessary for the cure of these women. Granted, there are some who will have uterine adenomyosis in association, and these women may need hysterectomies, but by and large there is no place for hysterectomy in the 23 year old or 30 year old woman just because they have severe endometriosis.

Deborah Bush QSM: Thank you for clarifying that. Dr. Tsaltas, one of the things that came out yesterday which was a little controversial, was whether to bowel prep every patient going in for laparoscopy where endometriosis was going to be excised. Would you like to give your views on that?

Dr. Jim Tsaltas: My personal practice is not to bowel prep everybody. If the patient has been referred, and from previous reports there is potential Pouch of Douglas perirectal bowel disease, then I would certainly bowel prep that patient. I think that if they’ve come to me for that surgery, then I really would like to deal with the problem at the one procedure.

However, if a young woman presents for the first time to my practice with symptoms that are suspicious of endometriosis, and we haven’t even got a diagnosis, then I think it would be inappropriate to have a full bowel prep. I would council the patient and if we then found severe disease infiltrating into the Pouch into the rectum, then she would need a secondary procedure.

I am quite comfortable with that, because a secondary procedure might well be three to four hours, and I think that you don’t want to feel pressurised as a surgeon within your own list when you’ve allocated a certain amount of time for a simple, operative procedure, to then take time away from your other patients, who are waiting longer and longer to have their procedure. There are certain issues that you may counsel her if you know that you may need to proceed to a bowel resection. I certainly would not want to have a bowel resection if I didn’t know that may potentially be the requirement.

If I can digress for a moment, I think that education is starting to get out to the gynaecologists. I do believe that gynaecologists really want to do the best thing for their patients, and I have a significant referral source from other gynaecologists. I think in the past gynaecologists have felt that if they saw a patient, and then referred them on, that the patient, and their referring general practice community, would look poorly upon them. I found the reverse. I think that if you as a woman go to a gynaecologist, and if I see a patient and make a diagnosis of a malignancy, I don’t feel bad that I have to send her to the oncologist. I think that’s the appropriate treatment, and the patient is grateful that the correct diagnosis is being made. I’m sure that feeds back to her friends and the general practitioner. If you go and see a particular doctor, then work out what’s going on, they may not necessarily be the person who finally operates on you. But at least they know what the appropriate treatment is.

I think that as a gynaecologist referring on to an appropriate surgical gynaecologist can only be a good thing for your practice. I think patients are very grateful and very supportive of that.

Deborah Bush QSM: To go back, you were talking about earlier having specialised centres, both of you, for multi-disciplinary and a holistic approach to treating endometriosis. I think that’s actually the standard of something that we should set. I know in New Zealand we now have specialised clinics for endometriosis, and they are becoming tertiary referral centres. But it’s going to be a while before it’s actually accepted, as you say, by the general public.

Dr. Jim Tsaltas: Our experience when we opened our endometriosis centre was a big backlash from the local gynaecologists. They felt that we would be taking away their work.

But, once we invited them into the theatre and they saw the things we were doing, the work that Charles does, and I do with severe infiltrating disease, the majority of people were, “Why would you want to do that”? And they would not have the training, and as the literature has started to show, the patients have a lot of recurrence, and they have a significance to improvements in their well being, and reduction in their pain levels. They said, “Well, I haven’t been trained in this area. I’m not going to be trained but maybe that is the best treatment.” Where you initially looked at that tertiary centre, which maybe consumers access themselves, there is a slight shift in gynaecologists starting to send their patients to that tertiary centre as well. I’ll be interested to hear what Charles’ experience is.

Dr. Charles Koh: I agree with Jim. I think our local gynaecologists in the hospital I work, and in the area, have no resistance at all to referral. So I think it’s a matter of exposure. Once they know you are doing good for their patients, they are very happy for the patient to go back to them for other things.

Dr. Jim Tsaltas: Certainly in my practice I do no obstetrics and the patient will go back to their obstetrician and gynaecologist for their ongoing care. I’ve dealt with the problem that I’m an expert in, and they’re experienced in other matters to deal with women’s health, and they can look after things from then on.

Deborah Bush QSM: Thank you very much. I think one of the aspects that we can look at too, is that here in New Zealand we’re even ahead in some of the things, which I think is exciting, such as in adolescent education, and general menstrual health and endometriosis.

So we’re seeing a greater number because of this program, which has been operational for five or six years now, presenting with symptoms of endometriosis being diagnosed and, treated and managed appropriately. I think if we can do an educational thrust, not just with education with gynaecologists and your colleagues, but education for consumers, young women, so they’re not having to put up with the symptoms that are so classic, and that have plagued women from their teenage years right through their reproductive lifetime.

We're all doing a great deal of good for the general awareness of endometriosis. I think too that the patient isn’t as accepting now because of awareness, because they know from increased awareness that people like yourselves have created treatments that bring about success, in terms of relief of symptoms and fertility. So patients won’t put up with it themselves. Instead they’re going hunting, and certainly the Internet has helped as well. Our educational programs have helped and so have conferences like this; and I really congratulate you both in your areas of expertise, for giving help to so many women who suffer.

Dr. Charles Koh: Thank you. I applaud programs like yours, which do treat the whole person because it’s certainly more than just a surgical disease. But nevertheless I think accurate surgery is important but the whole patient approach and education are very desirable.

Dr. Jim Tsaltas: Yes, it certainly makes a big difference.

Deborah Bush QSM: Thank you very much doctors. It’s been an enlightening talk this morning.

Dr. Jim Tsaltas: Thank you for the opportunity.

Dr. Charles Koh: Thank you.

MIMIS, The Milwaukee Institute of Minimally Invasive Surgery at Columbia St. Mary's is the Midwest's first multi-specialty minimally invasive surgical center of excellence. Established in 1992 by a group of highly respected leaders in the field of minimally invasive surgery, the Institute grew out of a strong desire to provide the most innovative surgical care and treatment for patients. In addition to providing excellent patient care, physicians of the Milwaukee Institute of Minimally Invasive Surgery have published books and articles, reported their results in medical literature, and taught and lectured worldwide. [http://obgyn.net/ads/url.cfm?http://www.mimis.us/procedures/index.html]