Pain Associated with Minimal Endometriosis

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“Minimal” endometriosis does not mean minimal pain. In fact, the opposite may be true- “minimal”, smaller lesions can produce a large number of prostaglandins that can lead to major pain. While this is an older study and “microscopic” endometriosis is debated, it is an interesting study demonstrating the appearance of lesions and the related pain felt. The research was done using laparoscopy under IV conscious sedation. Researchers identified that more pain was felt by the patient for some colors of lesions versus other colors. They also discovered that palpation of the endometriosis lesions produced the pain of cramps, not the uterus. Location of the endometriosis lesions in certain areas reproduced pain in other areas of the body, such as lesions on the utero-sacral ligaments lead to cramps in the back or those on the side wall of the pelvis led to pain radiating down the leg.

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Study:

“A simple analogy that is often used to explain endometriosis to the patient is the example of the eyelash and the eye. The eyelash is a “normal” part of the eye and quite separate from the eyeball. Should a “normal eyelash” be placed on a “normal” eyeball, the eye becomes red with dilated corkscrew vessels. The eye becomes painful but continues to function, though not optimally. The eyeball returns to its normal state once the eyelash is removed. The body reacts in a similar manner when the “normal peritoneum” is exposed to the “normal endometrial tissue.” The peritoneal lining develops red lesions with dilated corkscrew vessels and becomes painful. The pelvic organs continue to function but not optimally, which can lead to infertility. The way to cure the problem is to find and remove the “normal endometrial tissue.” Although this analogy is not perfect, the patients seem to grasp the concept, since they have all experienced an eyelash in the eye scenario….

“Initial work on mapping of pain associated with the endometriosis lesions resulted in some thought-provoking findings. The classic black lesions were found to be painful in only 11% of patients when the lesion was touched. Similarly, white lesions were painful in 20% of patients with red lesions at 37%, and clear lesions at 32% were the most painful (Table 1). These results added further reason as to why initial therapy had such poor results. Surgeons would only “see” the black lesions and removed them, but these were the least painful lesions. The most painful clear lesions were not “seen” at laparotomy and therefore remained, as did the pain. What became apparent next, while mapping the patient, was the fact that the pain extended 28 mm beyond the visible border of the lesion onto what looked like “normal” peritoneum… 

“…Palpation of the lesions of endometriosis produced the cramps, not the uterus. Patients, postoperatively, reported that once they identified the cramps of endometriosis, they noticed that they were different than menstrual cramps. Furthermore, palpation of the endometriosis lesions on patients without a uterus and both ovaries removed reproduced the cramps of endometriosis. This confirmed the findings of other researchers who have concluded that a hysterectomy often does not change the course of the pain of endometriosis since it is the lesions, not the uterus, which are responsible for the cramp-like pain. The location of the lesion in relationship to the pelvis can, in most instances, reproduce the symptoms the patient experiences. Lesions on the utero-sacral ligament, when palpated, cause pain or cramps in the back. Palpation of lesions on the side wall of the pelvis result in pain or cramps radiating down the leg.

“What is most interesting is that right-left orientation of the pelvis does not exist in some patients.12 That is to say, palpation of a lesion of endometriosis on the left side of the pelvis may produce pain that the patient perceives as being on the right side of the abdomen, and the opposite is also true. How many times has a laparoscopy under general anesthesia been done on a patient complaining of right-sided pain where the surgeon saw a normal looking pelvis on the right—only to wake up the patient and tell her, “I saw nothing on the right side of your pelvis that would cause your pain.”

“The data revealing the failure of the approach of “treat and see,” based on what the surgeon observed at laparoscopy under general anesthetic, is strong and reveals that a new approach is needed. An approach based on patient confirmed diagnosis and patient-based analysis of the results of therapy needs to be looked at in greater detail. The only person who knows where the pain starts and ends is the patient herself. She is also the only one who can confirm when the pain is no longer present.”