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Endometriosis is apparently a hot topic with many scientifical controversies. In addition to the numerous and well organised patient organisations, political action and lobbying has become more prominent over the last years. As a consequence of this Endometriosis has been recognised as a social disease in Italy, while also in the EU endometriosis has been put on the political agenda. Recently the monthly newsletter of the WES had an editoreal criticising amonst other things, quality control in surgery. I quote ” You may have noticed a vicious war is raging. Between surgeons. About excellence………………………. It has even been suggested that there should be a camera in every OR and mandatory video registration to prevent abuse and permit quality control………………”.

To understand this comment insight in the medical politics of endometriosis is necessary.

First endometriosis is a misnomer and not always a disease.. Endometriosis was defined 100 years ago as endometrial cells outside the uterus. which is a microscopical description The real questions remains whether this is a disease, something abnormal. Although this sounds like a scientific discussion concerning pathophysiology, the medico polical background is important to understand .

If typical cystic and deep endometriotic lesions are considered 3 different pathologies and 3 endpoints of a disease, without progress from one to the other the specific symptoms of each entity are straightforward. Endometriosis hence becomes a not recurrent disease, as other benign tumors as myoma’s, if surgery was complete. As for most benign tumors, a medical cure is not very realistic. The technical difficulty of complete laparoscopic excision of deep endometriosis has generated the concepts of the Pelvic Surgeon and of quality control in surgery eg through videorecording.
Considering endometriosis as one disease is based upon the hypothesis of Sampson with important consequences. First subtle lesions are considered (erroneously) a pathology and endometriosis becomes a progressive and recurrent disease. Yet the impression exists that the large majority of gynaecologists supports this concept. Besides the fact that this is the traditional vision since 100 years, we should be aware of the a background of medical politics.

The background of the medical politics of endometriosis

Endometriosis is a ‘billion dollar business’ . It is a frequent pathology, with a central role in gynaecology since it is a frequent cause of pain and infertility. Besides the obvious stakeholders as patients, gynaecologists, the farmaceutical industry and the insurances other less well known stakeholders play a role, such as surgery for endometriosis. The development of endoscopic surgery, and the recognition of the technical difficulty of laparoscopic deep endometriosis surgery is changing the organisation of surgery : whereas endometriosis surgery by laparotomy used to be performed by all gynaecologists, deep endometriosis surgery was recognised as level III -the most demanding- surgery in gynaecology. Simultaneously the emphasis of infertility centers has changed away from microsurgery toward IVF.
IVF centers also emphasising excellent surgery have become rare and gynaecologists who are authorities in both surgery and IVF have become almost inxistent. Therefore referrals became moere important. In the absence of this, IVF with a deep nodule in the rectovaginal septum, or incomplete surgery, or liberal use bowel resections might occur.
Quality control of surgery through (mandatory) videoregistration meets strong opposition for several reasons. Besides Medico-legale concerns many are opposed to big brother scenarios. In addition everybody realises that auditing surgery might be used for many other aspects, one of them being that not all specialist should be allowed to perform any kind of surgery.
The DRG, the cost of a surgical intervention, is less publicly known and few realise the direct relationship with quality control. All endometriosis surgery in eg Belgium, also the resection of a deep nodule, is reimbursed a few hundred euro. If however a bowel resection is performed the cost is some 1000 euro, and this nothwithstanding the fact that a nodular resection is more difficult and takes longer. The WES editoreal raised the problem writing “Some of them seem to fear that if bowel resection is paid better than a selective resection of lesions, while being faster and easier, their fellow surgeons would go for an unnecessary bowel resection rather than take the trouble of removing just the invasive process.” Reality is that this important price difference induces a psychological bias, since we all often have the impression that “more expensive must be better”, and that whenever the options are not that clear, bowel resections are favorised, especially when discoid resections mean a referral often to another hospital. More important is that it is impossible the increase the reimbursement of all endometriosis surgery, while the selective increase of the reimbursement of severe endometriosis surgery requires some relationship between cost and severity, something that is difficult without some control of the intervention. In Italy and in the UK discussions are being held to align the reimbursement of severe deep endometriosis nodules (infiltrating the muscle of the bowel) whether performed by bowel resection or nudule excision. This obviously requires videoregistration in order to prevent that a too liberal use of this DRG . Registration would moreover also be important to judge the error in judgment when after a bowel resection, endometriosis is not confirmed by pathology.
Research in endometriosis obviously is important. But research implies grants and money. Again the concept whether endometriosis is a benign tumor (with subtle probably occurring intermittently in all women) or whether implantation is the key initiating factor remains important. Indeed this concepts make research in implantation irrelevant or very important. The same holds true for prevention of implantation to prevent endometriosis. Thus funding risks to shift from implantation to benign tumors. And who decides : the majority .

The pelvic Surgeons are a very small minority in the large group of endometriosis specialists. Also the discussion that we need centers of excellent surgery, not centers of excellence in endometriosis, which risk to do more harm than good, reflects this concept.

Those who promote the pelvic surgeon concept and who try to avoid bowel resections are a small group. Indeed since deep endometriosis is a relative rare disease not that many surgeons are necessary to deal with the pathology, while not that many can have a large eperience.
The large majority is opposed to this concept albeit for various reasons.

The bodies involved in education and accreditation The concept of pelvic surgeon indeed does not fit with the actual subspecialties in gynaecology.
Referrals of deep endometriosis. If bowel resections are the recommended treatment, this type of surgery can be done in every hospital since all surgeons are able to do bowel resections. Although it is unclear what role the high reimbursement of bowel resections play, the local relationship between the gynaecologist and the surgeon are influenced by the alternative of referring patient to another hospital instead of doing together a bowel resection.
Most gynaecologists are opposed to a quality control in surgery
The Infertility lobby. Good surgery indeed is a prevention of IVF . An IVF baby is more expensive than a surgery baby. Mundially we are witnessing a shift away from surgery towards IVF that some call a medico industrial complex.
Oncologist are opposed to the concept where oncology would be less a subspeciality including surgery.
Many scientist do not like the concept that subtle endometriosis and implantation are less important, albeit because of their background.

Prof P. R. Koninckx and Drssa Anastasia Ussia

Habiamo avuto una discussione e-mail internazionale sulle problemi del diagnosi dell’endometriosi (in completo click qui)

Following an international e-mail debate concerning research in endometriosis and political 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.

Philippe Koninckx and Anastasia Ussia
Gruppo Italo Belga.

Demanda
Invio questa e-mail  in quanto mi è stata diagnosticata una adenomiosi e vorrrei un parere a riguardo.Nell’aprile 2009 durante una Laparotomia mi è stato riscontrato un adenomioma di 9 cm nel miometrio. Tutti  i ginecologi consultati mi hanno detto che è impossibile rimuoverlo chirurgicamente.Così ho fatto una terapia con Enantone 3,75 per 6 mesi.ma l’adenomioma non si è ridotto, è rimasto completamente invariato. Sto cercando una gravidanza, mi  sottoporranno a  Isteroscopia  poco prima della fine della terapia con enantone, il prossimo 6 novembre,  e se la situazione dell’utero non è troppo drammatica tenteranno un ciclo di FIVET.
se all”Isteroscopia  risultasse una compromissione della cavità uterina, ad esempio una massa occupante o deformante la cavità che  rende imopossibile la gravidanza, pensate che è possibile effettuatre una chirurgia e rimuovere l’adenomioma? avete avuto casi simili trattati con successo?Grazie attendo  speranzosa una risposta.

Risposta

Riguardo la sua adenomiosi consideri quanto segue:
1. é difficile fare una  diagnosi differenziale  certa tra un  nodulo di adenomioma e un classico fibromioma sia con l’ecografia che con la RMN. A  volte è anche difficile fare la diagnosi durante la laparotomia.  Ciò vuol dire che la diagnosi potrebbe anche essere errata. Sono molto simili con la differenza che un fibromioma ha sempre una capsula che lo separa dal resto e quindi un chiaro piano di clivaggio per cui si può rimuovere facilmente e senza danneggiare i tessuti sanni, l’adenomioma è sprovvisto di capsula, si infiltra nei tessuti sani senza un chiaro piano di clivaggio e l’asporatzione completa è difficilissima, il più delle volte impossibile  e anche può causare molta perdita di sangue.
2.  Sia per l’adenomioma che per il fibromioma il trattamento con Enantone è una perdita di tempo : La terapia non cura  mai  completamente queste patologie, determina solo una riduzione del volume fino al 30% e subito dopo la terapia  spesso tutto ritorna come prima. La terapia è solo una preparazione alla chirurgia, in quanto riduce la perdita di sangue durante l’intervento, ma d’altra parte la  chirurgia può diventare più difficile perchè il piano di clivaggio è meno individuabile per una maggiore fibrosi  ;
3. Un Adenomioma è sempre intramurale, cioè nella parete muscolare dell’utero (miometrio) : ma chiaramente sia l’adenomioma che il fibromioma di 9 cm possono distorcere e ridurre la cavità uterina per compressione estrinseca.L’isteroscopia non aggiunge niente alla diagnosi. In ogni caso una isteroscopia operativa non è fattibile per un mioma di 9 cm!
4. Ciò significa che l’unica opzione che lei ha è una Laparoscopia:
-  Primo Si fa una diagnosi certa e se si tratta di un semplice fibroma di  9 cm  può essere rimosso completamente  e si ha dopo un utero pressochè normale e di conseguenza si ha una normale fertilità ed un normale tasso di  gravidanza spontanea.
- Se si conferma un adenomioma, certo sarà difficile rimuoverlo completamente per la mancanza del piano di clivaggio. Ma si può fare una asportazione anche parziale (Debulking) che riduce la massa e quindi la compressione sulla cavità uterina. fino ad avere una cavità quasi normale.i risultati sulla fertilità non sono chiarissimi : ho revisionato la letteratura un paio di anni fa  e cercato delle pubblicazioni  ed ho trovato  riportati 4 casi  trattati con  debulking  e 3 hanno avuto una gravidanza . io personalmente ho trattato 3 casi con debulking  per via laparoscopica con l’utilizzo del laser CO2 che consente di essere più veloci e ridurre la perdita di sangue e due hanno avuto una gravidanza spontanea.

In conclusione,  per un nodulo grande di adenomioma di  9 cm un  debulking  laparoscopico è l’unica opzione al momento attuale. se non vi sono associati altri fattori che possono ridurre la fertilità la possibilità di gravidanza spontanea aumenta nei primi 6 mesi e se dopo 6 mesi non si ha una gravidanza spontanea si può prendere in considerazione la FIVET.

Prof  P.R. Koninckx and Drssa A. Ussia

Una paziente ha inviato una email ‘ Qual’è l’utilità del cortisone nella terapia dell’endometriosi ?.‘

Risposta

Personalmente non ho mai capito perché il cortisone sarebbe utile per  l’endometriosi. Inoltre nè nei congressi, nè nella letteratura  sono mai emersi dati che  giustificano la terapia con il cortisone per l’endometriosi.  Anche la terapia con antibiotici è inefficace.

Se la terapia con antibiotici è solamente inefficace, la terapia con cortisone puo anche essere dannosa sopratutto se somministrata  prima di un intervento chirurgico per il rischio più alto di infezione e di problemi intestinali in caso di endometriosi profonda. La terapia con cortisone, con i dati di oggi,  non puo essere considerata  sperimentale , ma  un uso inadeguato et potentialmente dannoso.

Prof P. Koninckx       Drssa A. Ussia

Sintesi Italiano : è un errore considerare l’endometriosi come una malattia progressiva e recurrente.

Blog in inglese :

Sintesi : è chiaro che l’endometriosi è una malattia chirurgica ma chi sono tanti problemi per non farlo. Chi sono tanti conflitti di interessi. Habiamo bisogno di “centra di chirurgia exelleti per l’endometriosi’ inviece di “centri di eccellenza” (generalmente organisati da non chirurgi)

blog in fiammingo”