Hardly a week, and sometimes hardly a day goes by without a patient telling me she has been diagnosed with stage IV endometriosis. I normally try to cross reference this claim with operative images or video. I am becoming increasingly concerned that many patients are told or led to believe that they have severe and significant stage IV disease when in fact that is not the case. In the last few days I have spoken with a patient who was told she had severe disease and that any surgery would be risky and require a specialist urological surgeon present as both ureters would need to be stented. The operative images (shown below) revealed a moderate area of endometriosis at worst near but definitely not involving the ureters. This represented a simple and fairly straightforward situation where a surgeon with moderate skill should have been able to safely excise these areas with no requirement for ureteric stenting. The patient had been concerned about the advice she had received and sought me for a second opinion and I was easily able to demonstrate that she did not have significant disease by showing her multiple cases of true stage IV disease.
I would like to believe miscategorisation is rare however I am increasingly convinced it is actually quite common. It is well known that the staging system is not particularly useful as a prognostic tool. There are multiple staging systems which illustrates the deficiency inherent in the system. Whilst the American Fertility Society system attempts to objectively rate a stage, there is a degree of subjectivity.
Endometriosis surgery is somewhat unique when compared to many other types of surgery in that there is no definitive endpoint such as successful removal of the appendix. This situation creates significant difficulty in the ongoing management of patients when information about surgery cannot be trusted. Much research in the area is compromised by this issue. Possible reasons for the problem include surgical inexperience and a desire by some patients to overemphasise the state of their endometriosis. In Australia Medicare will fund greater amounts for the removal of the more severe forms of endometriosis. There is therefore a perverse incentive for an unscrupulous surgeon to upstage the endometriosis and receive a greater fee than is actually necessary. In my practice I try and ensure we obtain multiple operative images so that I can precisely explain what in fact has occurred during the surgery. Around the world there are calls for imaging and preferably video footage to overcome this problem.