By Dr. Kip Mackenzie
Here are my suggestions to help patients identify whether a gynecologic surgeon indeed performs radical widefield excision of endometriosis: a standard for true excision surgeons.
Here is my description of a “real deal excision surgeon”. They would….
1) Know and understand that endometriosis can be cured through complete excision of all disease.
This is predicated on their understanding that the origin of endometriosis involves a single embryologic event and not recurrent retrograde menstruation (Sampson’s theory). There are some excision surgeons who will admit the possibility of both – if not several – “theories”, but in the main, the excision of every endometriosis lesion depends on the understanding that the amount of endometriosis a person has is finite and, for the most part, the disease, fully excised is gone and the disease if not recurrent, is not “coming back”.
2) Excise endometriosis by some surgical means (using monopolar energy, harmonic energy, maybe some type of laser energy, or just plain scissors) to cut out the entirety of the disease burden (superficial as well as invasive disease) from every surface or every organ, from the deep spaces of the pelvis to the upper abdomen including the diaphragm surface.
That said, some gynecologists cannot get credentialing in their hospital to perform excision from absolutely every organ, and therefore have to rely on other specialty surgeons to perform the excision from those relevant anatomic spaces within the specialty.For example, large and small bowel endometriosis might involve general surgeons; endometriosis into bladder/ureter would involve urologists; and thoracic endo would involve a cardiothoracic surgeon.
3) Be willing to describe in what circumstances endometriosis might not be excised (or “left behind”).
As indicated below, they may be working within a system where the gynecologic excision surgeon will excise all the disease that does not involve deep invasion into critical structures and, because they do not have readily available the services of either general surgeon or urologist, or cardiothoracic surgeon, rely on a secondary postoperative referral to whichever subspecialty would address the residual bowel, bladder or thoracic disease. This necessarily would involve a second surgery under those other specialties.
4) Be willing to provide a narrative of where, from whom and how they learned to perform full excision of endometriosis.
For every excision surgeon there is a narrative of how they took their skills to the level necessary to fully excise endometriosis. Recognize that Minimally Invasive Surgery training through the American Association of Gynecologic Laparoscopists (AAGL) does not promise experience in excising endometriosis.
5) Be able to describe in some detail the actual steps that they follow in the excision from the “peritoneum” be it in the pelvis, upper abdomen, or from the surfaces of bowel, bladder, ureter or diaphragm, including the surgical energy they might use (as in #2 above).
Most surgeons will follow a consistent strategy or approach. For example, they start high on the left side of the abdomen/pelvis, then move down along the left ureter into the space behind the uterus, then over the rectum and then go to the right pelvis. They should have a predictable approach to the endometriosis.
6) Be willing to provide larger sized pictures (not small “thumbnail size”) of the surgery – maybe even video – that demonstrates the before and after of surgery.
Someone not willing to openly demonstrate what they do will likely not be fully capable of doing complete excision. Indeed, full transparency is a good sign.
7) Be willing to review intraoperative pictures in detail with you – identifying what and where the endometriosis was located, as well as what was involved in removing all the visible endo.
The post-operative statement, “I got all your endometriosis, except I may have left some that was on your bladder/bowel etc. because I didn’t want to injure that structure” is a tell that they didn’t or can’t fully excise all the disease.
8) Be able to state unequivocally, when asked, that they perform “excision” of endometriosis as the primary treatment, not surface ablation (aka “coagulation”, “cauterization”, etc. ) procedures in order to burn the endo.
The requisite answer is some form of “yes” without an obvious qualification of that answer, such as. “Yes….but…..I might have to leave some endometriosis if it’s on the bowel/bladder, vessels. ” It is the “yes….but…..” responses that need further inquiry. You can ask in what circumstances would they leave endo (“invasive disease” or “surface disease”). To be fair there are occasional circumstances where surface ablation is the only workable option for getting rid of endometriosis, such as endometriosis that presents as surface (not invasive) growth off the surface of the uterus or the ovaries.
9) Have a follow-up plan for dealing with adenomyosis and pelvic floor muscle spasm as common comorbidities of endo.
Not having a plan indicates possibly insufficient experience in dealing with endometriosis such that they do not know about the high incidence of these comorbidities.
10) Be familiar with all the variety of hormonal options for suppressing the activity and therefore the symptoms of endometriosis but not indicate that hormones are an actual “treatment”.
Quick reliance on using GnRH agonists/antagonists (such as Lupron or Orilissa) either before surgery or more importantly after surgery might also be a “tell” that the gynecologic surgeon does not do full excision.
11) Be able to comfortably and easily speak of the numbers of endometriosis cases they do per week, month or year: the higher the better as case volume generally (but not always) tracks with skill and knowledge.
Can they describe their most recent case in terms of the amount and location of endometriosis? Remember, endometriosis is commonly widespread (not just in the pelvis), so a surgeon who indicates “endometriosis is only in the pelvis” is missing a lot of the disease.
12) Be willing to discuss the literature on excision and ablation that they know, without being overly rigid in their views.
13) Be able to answer your extensive and probing questions sincerely without being defensive, demonstrating irritation or dismissing either your questions or your unintended challenge to their medical authority.
14) Be able to speak about endometriosis with slightly more knowledge than you might have.
Having to teach your gynecologic surgeon about endometriosis is honorable and certainly can be an important part of your individual endo-advocacy. However, it could be a sign of lack of excision competence.
Of note, and to be fair, there are some gynecologic excision surgeons who will not have credentialing within their hospital system to perform deep excision of lesions invasive into the large/small intestine or invasive into the bladder/ureter or invasive into or through the diaphragm. In these circumstances the endometriosis excisionist would necessarily call in a general surgeon, colorectal surgeon, or urologist to perform excision from those structures. For the third clinical presentation (diaphragmatic disease) they might call their general surgeon who perhaps has particular experience with repairing hernias of the diaphragm or perhaps experience with surgery for acid reflux. Regardless, if the gynecologic surgeon invokes involvement of any one of the above specialty surgeons, it might recommend a whole secondary level of questions from you as a patient to help assess how willing these surgeons from other specialties are to take on the challenges of endometriosis. Some surgical specialists are willing and engaged, while others are more hesitant, which would increase the possibility that a request for their expertise might be deferred.
It should be clear that there are no absolutes, and YOUR instincts are powerful as well.
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Dr. Malcom “Kip” Mackenzie’s 35-year OBGYN career has been focused on providing “education and choice” – giving as much information as possible and offering the best treatment options. He has applied this commitment particularly to endometriosis; learning as much as possible about the disease, training the most advanced technicians and bringing that all to patients suffering from endometriosis.
His education, training and service spans Harvard College and Dartmouth Medical school, residency at Maine Medical Center, and a fellowship in Maternal Fetal Medicine at Brigham and Women’s Hospital. His own teaching has included Harvard Medical School, Boston University School of Medicine, Northeastern University, Dartmouth Medical School, Mount Auburn Hospital and Beth Israel Deaconess Medical Center.
Skilled in vaginal, laparoscopic, robotic and hysteroscopic technique, Kip holds speciality certification in Minimally Invasive Gynecologic Surgery (MIGS). With his focus on curative excision of endometriosis, he has performed over 2,500 complex endometriosis surgeries involving the pelvis, bowel, bladder, ureters and diaphragm. He continues his training of others in this advanced endometriosis excision technique.
Kip is a co-founder of The Endometriosis Alliance of Massachusetts. Through TEAM, he hopes to improve the infrastructure and systems around education and legislation, in order to increase patient access to expert care and achieve improved outcomes for this devastating disease.