Endometriosis experts diagnose endometriosis by excision biopsy of suspected lesions, but a reluctance to biopsy by many ob.gyns., who make the diagnosis visually by laparoscopy, means a distortion of results. A diagnosis of endometriosis should require a positive excisional biopsy documenting endometrial glands/stroma at laparoscopy.
Papers in the literature using visual documentation of endometriosis are worthless. Yes, I am saying that most papers on the medical and/or surgical treatment of endometriosis without biopsy are worthless. Many women with a clinical or visual diagnosis of endometriosis without biopsy do not have endometriosis; they are more likely being treated for “hemosiderin-laden macrophages,” the normal product of retrograde menstruation.
In most cases of severe endometriosis, the endometriosis – surrounded by scar tissue – can be palpated in the office using a simple rectovaginal examination. These areas are usually very tender to palpation, and this tenderness is used to direct the surgeon to the area to be removed. Postoperative examination (3-6 months after surgery) should be pain free if the appropriate area was excised.
Unfortunately, many women who undergo multiple “endometriosis” laparoscopies actually have minimal disease. Surgeons will typically perform diagnostic laparoscopy without biopsy followed by 6 months of gonadotropin-releasing hormone (GnRH) agonist treatment followed by another “diagnostic” laparoscopy. This is what I call “cashectomy” – extracting cash from the patient without any long-term benefit because the disease remains. The concept that endometriosis comes back is often a good excuse for poor treatment. What is called recurrent disease is really persistent disease that was never treated in the first place.
If this paints a depressing picture about the state of endometriosis diagnosis and treatment in the United States, believe me, it should. But surgeons alone are not to blame. The lawyers and the managed care insurance system have contributed. I was able to surgically treat extensive endometriosis over the past 30 years only because I did not participate within the managed care insurance system.
Over time, two distinct groups of laparoscopic surgeons have evolved: a very large cluster doing it for diagnosis and minimal treatment and a much smaller elite segment doing it for optimum treatment.
Here’s a brief summary of my surgical approach. Many women with extensive endometriosis have had multiple abdominal incision laparotomies that result in adhesions of small bowel stuck to the undersurface of the anterior abdominal wall. Thus, the first part of many endometriosis operations is to release small-bowel adhesions from the anterior abdominal wall to see the pelvic organs. The next step is to separate all pelvic organs including the ovaries, uterus, cervix, upper vagina, and rectum. The last step is to excise the endometriosis.
Symptomatic endometriosis is surrounded by fibrotic scar tissue from the repetitive longstanding inflammatory response. This scar tissue containing the endometriotic glands is excised from inside the ovaries, the posterior cervix and vagina, the rectum, and the uterosacral ligaments (and ureters if necessary). Rectal resection, discoid or complete, is done if the endometriosis penetrates the rectal and/or rectosigmoid wall. I use 2,000 cc of Ringer’s lactate to separate the operated-upon organs during early healing. I do not use GnRH agonists.
There are no fewer than 37 CPT codes to report a hysterectomy. But there are no codes to report an extensive endometriosis operation like the one I just described.
Most operations to effectively excise extensive deep fibrotic endometriosis take 3-4 hours. But the poor reimbursement available for complex endometriosis surgery and the high legal risk means that few gynecologists will want to acquire the skills to perform these operations. Instead, many in our profession consider it acceptable to diagnose endometriosis without biopsy proof and then perform laparoscopy with minimal treatment of the deep lesions. This should no longer be acceptable to our patients.
We need to develop proper guidelines for endometriosis diagnosis and treatment. Medical treatment cure rates are near zero, regardless of disease stage, and act mainly to suppress endometrial gland and stroma activity. Extensive endometriosis surgery, often involving excising rectal lesions, is the most difficult surgery a gynecologist encounters, more difficult than cancer surgery in most cases. But endometriosis is not cancer. It is a chronic inflammatory response to hormonally activated cells with resultant fibromuscular encapsulation.
I believe that the development of endometriosis subspecialty centers with gynecologic surgeons trained to excise bowel, bladder, and ureteral lesions is long past due in this country.
Dr. Reich, who performed the first laparoscopic hysterectomy, is a past president of both the International Society of Gynecologic Endoscopists and the Society of Laparoendoscopic Surgeons. He is currently an adviser to the Endometriosis Foundation of America. Dr. Reich has a financial interest in Apple Medical, which developed a trocar. E-mail him at obnews@elsevier.com.