Pain persisting after complete excision surgery: Persistent endometriosis or something else?

Most, but not all, pelvic pain in women is due to endometriosis. Even if endometriosis is found in the pelvis, however, this does not always mean that it is the cause of a patient's pain. For this reason, there is no way to guarantee pain relief after endometriosis surgery, even if all of the disease is removed. Happily, though, most patients report significant improvement or total relief of their pain after such surgery. If the pain is due to endometriosis, and if the disease is identified and removed completely, the pain will be gone. The only uncertainty is whether the endometriosis was the cause of the pain in the first place.

...if the pain is due to endometriosis, and if the disease is identified and removed completely, the pain will be gone. The only uncertainty is whether the endometriosis was the cause of the pain in the first place...

Other less common causes of pelvic pain include fibroid tumors of the uterus, adenomyosis of the uterus, scar tissue, ovarian cysts, musculo-skeletal problems and unknown factors affecting the uterus or ovaries.

Fibroid tumors can be removed if large enough to be seen, and this can frequently be done through the laparoscope, although smaller tumors can't be seen to be removed and may continue to grow and cause pain. Scar tissue can be dealt with through the laparoscope, as can ovarian cysts. However, scar tissue can reform, and so can ovarian cysts. Adenomyosis can usually be diagnosed and treated only by doing a hysterectomy. Some patients with pelvic pain may have adopted a change in posture to help deal with their pain, and this may result in muscle spasm and pain.

If the endometriosis patient has one of these other conditions, and if the other condition isn't dealt with at surgery, then a possible cause of future pain exists. Then, even if all of a patient's endometriosis is removed, endometriosis will still be blamed as the cause of any future pain. An actual case history will demonstrate this phenomenon:

LS, a 35-year-old white female with several children, had pelvic pain and underwent laparoscopy. Although endometriosis was found in the pelvis, it was not in the proper area to explain her pain. Additionally, there was not much disease. I excised all disease through the laparoscope. The patient continued to hurt. She eventually underwent hysterectomy by her referring surgeon, and at the time of this surgery, the surgeon and assistant surgeon were in agreement that no endometriosis was present. I was there at the operating table, too, this time as an observer. Although I didn't see any obvious endometriosis, I saw some very subtle changes which I pointed out and which were removed. The biopsies came back negative for endometriosis. The uterus was normal microscopically as well. Although no obvious pathology had been found, the patient was relieved of her pain. Although all surgeons and the pathologist were in agreement that the patient did not have endometriosis, the discharge diagnosis was officially listed as "Endometriosis", again proving that it is impossible to get rid of the disease once you have it.

The body heals after surgery by forming scar tissue. As surgeons, we depend on this and expect it. In pelvic surgery, post-operative scar tissue can cause pain, although not as commonly as one might expect. If the ovaries are operated upon or around, then scar tissue involving them is more likely to form. Excising endometriosis from the bladder, uterosacral ligaments, or floor of the pelvis will rarely result in significant scar tissue formation. Nothing has been found that will reliably prevent scar tissue formation, and it seems related more to the patient's healing process and the location of surgery. If scar tissue occurs and is painful, then it becomes a surgical problem again, since no medicine makes scar tissue go away. The unknown threat of post-op scar tissue formation, however, is not sufficient reason to avoid surgery for endometriosis, since such avoidance would be accepting an unknown fear and ignoring a real and present problem.

When a female is born, each ovary has thousands of eggs, and each egg is surrounded by a small follicle, which is actually a small cyst. Therefore, each ovary has the potential of forming many cysts throughout life. In fact, small cysts normally form before and after ovulation each month, and these normal cysts can sometimes hurt. Even large cysts can sometimes go away without treatment, however. There is no evidence to suggest that undergoing pelvic surgery for endometriosis makes it more likely for a patient to form painful cysts.

Adenomyosis is a structural change within the muscular wall of the uterus. The uterus can look and feel normal, yet still have adenomyosis. Neither laparoscopy nor hysteroscopy can diagnose adenomyosis, and there is no medical treatment known to eradicate it.

...persistent or recurrent pain after complete excision of endometriosis is usually not due to the disease. Focusing exclusively on endometriosis may not provide the correct answer to the patient with pain after surgical excision...

Most reports in the medical literature concerning persistent disease after excision of endometriosis reveal rates below 30%, and my own experience has been very similar. Therefore, persistent or recurrent pain after complete excision of endometriosis is usually not due to the disease. Focusing exclusively on endometriosis may not provide the correct answer to the patient with pain after surgical excision.