Following an international e-mail debate concerning research funding in endometriosis and lobbying for endometriosis some comments are important.
1. The discussion and comments clearly demonstrated that the professional world of endometriosis remains divided between a few advanced surgeons (dealing with severe and deep endometriosis), infertility specialists dealing predominantly with superficial endometriosis, gynaecologists involved mainly in medical treatment and researchers.
This already was addressed by discussing why “centers of excellence of endometriosis” could do more harm than good and why “centers of excellent surgery with quality control are needed”.
2. The delay in diagnosis remains a major issue and is caused by a series of factors such as lack of awareness, medical treatment given for longer periods without a diagnosis and lack of adequate referral.
The solution of a simple non invasive diagnostic test, as proposed mainly by the non surgeons and the infertility/IVF/minor surgery specialist might however do more harm than good.
A non invasive diagnostic test, unless 100% sensitive and 100% specific could cause problems as we are living today with MRI and ultrasound. Even for cystic ovarian endometriosis and even performed by experts sensitivity and specificity rarely exceeds 85%. If we really trust this diagnostic test this means that 15% of women will have surgery without a reason and that 15% will not have surgery although needed. When performed by non experts and for deep endometriosis it is much worse. A non invasive diagnostic test risks to meet the same problems of inducing unnecessary overtreatment and delaying necessary surgery.
3. As a surgeon, I personally do not need so much a non invasive diagnostic test for a series of reasons
* pain, certainly severe pain is an the indication for laparoscopy during which the diagnosis will be made. Treatment will be done at the same time or the patient can be referred.
* I do not consider it good clinical practice not doing a laparoscopy or refraining from doing a laparoscopy because the pain is slightly better with medical therapy. (as is often done by non surgeons)
* unexplained infertility for more than 2 years or longer needs a laparoscopy.
* if there is no pain or infertility I have no need to know whether somebody has endometriosis since anyway it is doubtful whether it should be treated..
3. Surgery today is the only really effective treatment for cystic and deep endometriosis. Yet for deep endometriosis, the availability and the quality of surgery is limited and bowel resections are performed increasingly more frequent. For bowel resection instead of discoid resection, I have not seen any justification until today. What is obvious however is that the side effects are much more important than generally acknowledged and that many bowel resections at least are not necessary ( eg when after bowel resection endometriosis was not confirmed by pathology, or when endometriosis was outside the bowel muscle). As unspoken underlying reasons I only can consider the fact that it is faster and easier (all bowel surgeons can do a bowel resection) or resistance to referral of the patient. In addition the fact that in many countries the reimbursement of a bowel resection is 5 times higher than of a discoid resection also might influence policy making. For this discrepancy to be corrected a quality control of surgery through mandatory videoregistration is necessary in order to remain within a reasonable health care budget.
P.R. Koninckx and A. Ussia