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Many women with the diagnosis of endometriosis do not have endometriosis.
There are two major considerations here.
The endometriosis diagnosis is often made during a doctor's office visit. This is usually a visit for pelvic pain. In these cases, the gynecologist makes the diagnosis of endometriosis by a pelvic examination without a rectal examination. (This examination, of course, differs from that done more thoroughly using a rectovaginal examination to evaluate the rectum and uterosacral ligaments, i.e., the deep pelvic structures.) A diagnosis made in this manner has no significance. We will have no idea if the patient has endometriosis or not. Yet, the patient goes on for many years with no reason for her pain, other than she "may" have endometriosis.
At some interval of time following the office visit, often, a diagnostic laparoscopy is done. And, at that time, the diagnosis is often made visually by laparoscopy without a biopsy. If these dark areas that are seen were biopsied, the results would often come back “hemosiderin-laden macrophages,” which are white blood cells filled with iron—the normal product of the body getting rid of blood from retrograde menstruation. Biopsy also may show fibrous scar without endometriosis glands. Most published papers in medical literature advocating visual documentation of endometriosis are worthless.
Diagnosis of endometriosis should require a positive biopsy documenting endometriosis glands surrounded by connective tissue and fibromuscular tissue. The fibromuscular tissue is similar to what forms when you cut your finger, another inflammatory response. Laparoscopy is the easiest way to obtain the biopsy unless the lesion is visible in the vagina.
Visualization of the fibrosis surrounding endometriosis helps the surgeon to identify the endometriosis. (I doubt that endometriosis cells or glands without fibrosis cause pain.) The fibrosis proves valuable during excision surgery as the surgeon can feel the junction between the fibrosis and normal tissue. (The scissors actually click as it crunches at this junction!) The feeling of this tissue is the major advantage obtained for laparoscopic surgery instead of robotic surgery. (Robotic surgeons cannot feel this.) But, more on that later.
In closing, please don’t say that you have endometriosis if your doctor has never given you proof.
@itstarot asks: The endo burning sensation that I usually feel is now being felt in the spine. Wondering if it's related to my endo and what's the best way to have it tested?
Do you have endometriosis? And do you have a pathology report documenting it? A burning sensation in the spine can be secondary to endometriosis of the uterosacral ligaments. During a laparoscopy, these can be visualized, and the endometriosis involvement is usually excised. Expertise is needed as the uterosacral ligaments are very close to the ureters and the rectum. A rectovaginal examination often can make this diagnosis.
@wendhigalephoto asks: What path does a person take to learn whether or not they have thoracic endometriosis?
Editor’s note: The opinions, beliefs, and viewpoints expressed by Dr. Harry Reich in this column are solely his own and based on his experience.