Endometriosis truly is a problematic disease for the patients since it is such a frequent cause of infertility and pain. Endometriosis also is a mysterious and enigmatic disease, since poorly understood because of the absence of an animal model.
Endometriosis is a key business for physisians, since it has such a central role in gynaecology as a cause of infertility and of pain and thus of IVF, surgery and hysterectomy.
Endometriosis is a billion dollar disease considering the cost of medical treatment, surgery, of decrease in work efficiency because of suffering.
Treatment of endometriosis today is limited to complete surgical excision whereas medical treatment is only palleative, since it only inactivates the disease. Yet reality is overuse of medical treatment, a lack of well trained surgeons, and very frequently inadequate or incomplete surgery.
This constitutes a serious problem in infertility treatment as I explained at ASRM in Philadelphia a few years ago. During the 80’s fertility surgery was centralised since microsurgery was considered important. During the 90’s the results of IVF improved, the overall quality of fertility surgery went down, since performed by laparoscopy and thus by ‘all’ gynaecologists. Moreover the infertility specialist became both a party and a judge, and a mentality developed that any failure of surgery could be solved by IVF. This is highlighted by the fact that -if judged by publications- those who are excellent in surgery and in IVF have become rare birds. I concluded, that for this reason -if I would be minister of health-
I would organise IVF as a service (similar to radiology) needing referral by another specialist and that I would organise a quality control in fertility surgery by making video registration mandatory. This way I would improve quality of surgery, increase pregnancy rates while decreasing the overall cost. Indeed the cost of an IVF baby is estimated around 20.000$ whereas the cost of a surgery baby is at least 5 times less.
Also support groups and industry are becoming increasingly misoriented. This is not surprising since -considering the relative role of surgical and medical treatment- it is surprising to see that surgeons are so poorly represented in advisory boards, and endometriosis special interest groups, whereas those performing research are over-represented.
In conclusion, it seems important that at least some evaluation of the quality of surgery becomes organized and that minimal standards are introduced. Secondly we should be aware of the risks when guidelines and political lobbying is performed predominantly by those not performing surgery. Without questioning the importance of research, I do question whether there is a specific lack of funding in endometriosis research.
Multiple examples for these statements exist ranging from the lack of emphasis on surgery in ‘endometriosi a malattia sociale’ and in the lobbying at the level of the EU parliament.