http://www.scmc.org/endo/html/reprint7.html
Doctor to patient: "So. You have endometriosis. Well, let's remove your uterus, tubes and ovaries. This is the only known cure for the disease. You see, it works this way: the endometriosis comes from refluxed menstrual blood flowing out of the ends of the fallopian tubes into your abdominal cavity, carrying with it living cells from the lining of the uterus. These refluxed endometrial cells attach to various pelvic, intestinal or abdominal surfaces and begin to grow. Removing your uterus will stop the reflux problem, and removal of the ovaries will cause the endometriosis which remains behind to go away forever."
Why would you treat a disease surgically by leaving the disease in place and removing something else?
Patient: "I don't quite understand. Why would you treat a disease surgically by leaving the disease in place and removing something else? Could we just try to remove the disease first and see what happens?"
Doctor to patient: "That's not the conventional approach to this disease. In fact, I think it's entirely inappropriate. What I have outlined is the accepted, definitive therapy for the disease. If you're going to question my recommendations, perhaps you would be more comfortable finding another physician."
Patient: "Well, I guess you're the doctor. I haven't had any children yet, but my pain is so bad it looks like I have no alternatives. If you say so, I guess it's okay."
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Most gynecologists are taught that the definitive or permanent treatment of endometriosis is to remove the uterus, tubes and ovaries, but not the endometriosis.
How many women have heard this or some variation? What scientific evidence supports this dialogue? How effective is castration for relief of pain related to endometriosis? What happens to patients with continuing pain after castration, the "definitive cure" for endometriosis? These are important questions.
The notion that castration physically destroys endometriosis stems directly from the observations by Sampson in the 1920's that endometriosis was rarely seen after the menopause. From that observation 70 years ago, Sampson, and other physicians, jumped to the conclusion that menopause therefore must destroy the disease.
In explaining this leap of faith, Sampson extolled the supposed virtues of menopause and castration: "I hope and expect that the cessation of ovarian function will cause any (endometriosis) tissue which was left in the pelvis to atrophy"1 and that ". . the implantations will usually, possibly always, atrophy after all ovarian tissue is remove...All of them probably cease to grow and actually atrophy after the menopause."2
The notion that menopause physically eradicates or cures endometriosis is so powerful that no one has thought it important enough to go to the trouble to prove this point, and not one scientific study to date has proven that the menopause eradicates endometriosis. This is particularly significant since modern pseudomenopausal medical therapy is based on the presumption that endometriosis is physically destroyed and eradicated (not just suppressed) by some as-yet-undescribed magical effect of low estrogen levels which duplicate the curative effects of menopause.
Most gynecologists are taught that the definitive or permanent treatment of endometriosis is to remove the uterus, tubes and ovaries, but not the endometriosis. It is not commonly taught that the endometriosis should be removed instead of or in addition to this primary procedure.
A review of the literature of treatment of endometriosis-associated pain did find that the more pelvic structures/organs that were removed surgically, the more likely pain relief was to occur. 3 While this seems to validate the functional utility of removal of the pelvic organs with retention of endometriosis, there is no question that endometriosis can remain symptomatic after the menopause, even without estrogen therapy. 4 How, then, can a physician know at the time of removal of the pelvic organs whether the endometriosis left behind will be symptomatic? The answer is: he or she can't with absolute certainty. However, there are some clues that might help predict the possibility of continuing symptoms after such "definitive" surgery.
...removal of the pelvic organs will remove all endometriosis in only about 4% of patients.
It has been shown that patients with invasive disease of the pelvic floor, including obliteration of the cul de sac, were over-represented in a group of patients with pain and endometriosis persisting after castration.5 Obliteration of the cul de sac means that the rectum has become adherent by scar tissue to the back of the cervix. This implies the possible presence of invasive endometriosis of the rear of the cervix, both uterosacral ligaments, the cul de sac, and the front wall of the rectum. Complete surgical treatment must take all of this into account.
Ninety-six percent of patients with endometriosis have disease in areas that would not be removed by removal of the pelvic organs alone. 5 In other words, removal of the pelvic organs will remove all endometriosis in only about 4% of patients. If the retained disease is superficial, this may cause no problem. If the disease is invasive, it may be more likely to remain symptomatic after removal of the pelvic organs.
Invasive endometriosis of the pelvic floor and front wall of the bowel represents a treatment problem for many gynecologists, however. Not all surgeons are experienced in the identification of severe endometriosis or the efficient en bloc resection technique. 6
Not all patients are bowel prepped at the time of their hysterectomy, so even if the severity of bowel involvement is apparent, it may be unsafe to treat it surgically. A general surgeon called into the operating room may decline to operate on such a patient since they may not have met the patient, or because of lack of a bowel prep, or because they consider removal of the pelvic organs to be adequate treatment.
While removal of the pelvic organs and retention of endometriosis may frequently relieve pain, why does it work? We still don't know why endometriosis causes pain. Since many lesions are not associated with adjacent hemorrhage, however, it is clear that pain is not due to bleeding adjacent to endometriosis. Being a glandular structure, presumably endometriosis secretes something which irritates the surrounding tissue, promotes local fibrosis, and occasionally destabilizes nearby capillaries resulting in bleeding adjacent to the endometriotic lesions.
Although lack of estrogen has never been shown to eradicate endometriosis, there is no question that endometriosis can be responsive to estrogen, although the response of individual lesions frequently differs. The degree of response of endometriosis probably depends on the level and activity of estrogen receptors in the lesions. This could explain why endometriosis can look and behave differently even in the same pelvis, with some lesions remaining superficial, while others become invasive and surrounded by fibrosis or hemorrhage.
The ovaries produce estrogen which directly bathes adjacent endometriosis with high levels of this hormone. When the ovaries are removed, this direct bathing ceases, so the lesions decrease in activity. Even if estrogen is given by pills, patches, or shots, the blood level reaching the endometriotic lesions is lower, so they aren't stimulated as much. The end result is less pain for many women undergoing hysterectomy and castration, even if the endometriosis is left in place.
It is important to keep in mind, though, that not all pelvic pain is necessarily due to endometriosis. Some of the pain which may be relieved by hysterectomy/castration might have been due to problems with the uterus or ovaries, not due to endometriosis. Therefore, hysterectomy/castration for "endometriosis pain" seems better than it really is. This helps to artificially magnify the apparent benefit of this procedure in the eyes of busy surgeons, who view it as a very effective and helpful procedure. However, this may be viewing the response of symptoms rather than the response of the disease.
How often does hysterectomy/castration for endometriosis work? Experience and some preliminary study indicate that this approach actually usually works, although perhaps not well enough. It has been found in a follow up study 7 that 7% of women undergoing hysterectomy/castration for endometriosis had recurrent symptoms and 1.7% required reoperation.
...around 9,000 women annually may be left symptomatic after hysterectomy and castration for endometriosis
Between 1982 and 1984, approximately 130,000 hysterectomies were done annually for endometriosis. 8 This means that around 9,000 women annually may be left symptomatic after hysterectomy and castration for endometriosis, and over 2,000 annually may be at risk for reoperation. If, every year, several thousand elderly patients or men were not being helped by a surgical procedure, there would be a tremendous political fallout, even if the majority were being helped. Since women in pain due to endometriosis are not valued as highly by society as are the elderly or males, things just keep trudging along.
What happens to a patient with continuing pain after removal of the pelvic organs and retention of her endometriosis? Many try to live through it, some are placed on drugs to suppress ovarian function (even though they have no ovaries), others are referred to pain clinics or psychiatrists because they are told "it's impossible to have endometriosis after this type of surgery." These patients usually had been through multiple medical or surgical attempts to treat their disease before removal of the pelvic organs, so these women have literally had everything done to them and to their disease except one thing: the disease has not been removed from their body. When this is finally done, most women will achieve significant pain relief. 5
Am I against hysterectomy or surgeons performing them? Of course not. It is a very useful procedure for uterine problems which do not respond to conservative treatments. The Maine study on hysterectomy found a very high rate of success and patient satisfaction following the procedure for whatever reason it was performed.9 I perform my share on patients with or without endometriosis. However, I try to reserve hysterectomy for patients with symptoms suggesting that the uterus is a problem, such as adenomyosis. Although it may be successful in relieving symptoms, performing a hysterectomy with the idea of curing endometriosis is not scientifically sound, particularly if no attempt has been made to remove the endometriosis completely.