Should we expand the definition of endometriosis?
The current definition of endometriosis is the presence of endometrial glands and stroma outside the uterus. This limited definition of the disease unfortunately creates unrealistic expectations that simply removing the disease results in a “cure”.
The reality is that we are hopelessly lost in understanding this disease and the underlying pathological process. It is known that individuals who have histologically proven endometriosis will have other abnormalities. These include changes within the normal endometrium such as the presence of nerve fibres, other immunological abnormalities at the endometrial myometrial interface, changes within the immunological profile of the peritoneal fluid and possible changes in the egg quality of patients with endometriosis. Further there appears to be an association with certain cancers, (ovary breast and melanoma) and an association with increased risk of auto-immune diseases, asthma and atopy. Pregnancy complications including miscarriage, ectopic, haemorrhage and prematurity appear increased but interestingly endometriosis might be protective for the development of hypertensive diseases and pre-eclampsia. All of these issues suggest that the disease is more than just some abnormal cells outside the uterus.
Despite the best efforts of your surgeon to remove “all visible disease” sometimes it may not be possible or practical to remove all the disease. Even if you do remove all the disease surgery will not correct all the other associated phenomena currently not well understood. It is well known the staging system as currently exists often conflicts with symptoms and at times is not a useful predictor of fertility prospects or pain. The natural history clearly demonstrates that pregnancy is highly advantageous to symptoms in individuals with endometriosis and it appears clear to me that some form of progestegenic support is almost mandatory in the ongoing management of patients with endometriosis. To put that another way the management should not be surgery alone. In an ideal world multiple pregnancies starting at a young age is probably the answer but many if not most people are unlikely to embrace this option. Management plans really need to be individualized but if surgery is contemplated it should involve attempting to excise “all visible disease” and then ongoing treatment with either pregnancy or some form of “pseudo-pregnancy” state with hormonal manipulation.
I am coming to the realization that our current definition of endometriosis is far too simplistic and creates significant difficulties for both patients and medical practitioners as this simplistic model encourages unrealistic expectation of what is possible with our current therapeutic armamentarium. The current definition implies that simply removing the disease results in a “cure”. It is time to embrace a more encompassing definition extending to include the clinical aspects of endometriosis which are not well understood and are not simply a result of ectopic endometrium.