Nancy Petersen, RN: While I do not have command of the full literature on pain and its complex underlying issues, I want to address endometriosis generated pain. We often see women in our large Facebook groups resigned to a life of chronic severe pain.
These groups of women number in the 10’s of thousands on the various boards I monitor and counsel. The common denominator is most still have active, inadequately treated endometriosis after experiencing all most all gynecology has to offer. Something is definitely amiss. When a 100,000 patients a week or so are asking for help, for relief, for understanding we have to ask are we really doing enough to relieve pelvic pain?
I think in the presence of endometriosis, given my 30 years of watching the field and advocating/educating women with endometriosis, we should start with the basics. Without a doubt, many of the patients I have seen since the mid 1980’s have had dramatic relief of their endometriosis associated pain, relief which persists today as I still hear from many from time to time. The key seems to be meticulous removal of disease. Key factors seem to be the surgeons understanding of what endo looks like through all of its evolution in color appearance and the statistical distribution of disease and how that correlates with symptoms. Since endo is a multi-factoral disease, some times multiple specialties are required to adequately address that.
We see some centers utilizing teams of surgeons to see this group of patients, so the individual surgeons become highly skilled through constant exposure to complex cases. For instance a colo-rectal surgeon with repeated exposure to endometriosis of the intestinal tract will learn very quickly that colostomies and ileostomies are largely, (almost always ) unnecessary. Yet if a patient is exposed to a colorectal surgeon with out that team experience, often they are told they will need such an intervention. In any event, lesions on or near the bowel need to be addressed surgically if pain relief is one of the goals as medication does not “clean endo up.” Often patients have been told substantial disease was left on the bowel because it was inoperable. In most cases this would not fit with the experience of those who see this disease every day.