Endometriosis Overview and Problems

With Adhesions

Typical endometriosis

Subtle endometriosis

deep endometriosis

cystic ovarian endometriosis

Definitions
Endometrium is the tissue lining the inside of the uterus. The endometrium is shedded every month, ir the menstrual bleeding .
Endometriosis is by definition endometrial stroma and glands outside the uterus .
Adenomyose is endometrial stroma and glands in the myometrium of the uterus
Summary : as shown in the pictures , endometriosis varies from small and superficial implants tot to cystic ovarian endometriosis and deep endometriosis .
Small end superficial endometriosis is very frequent and is considered general gynaecology. Surgery requires basic training only but nevertheless medical therapy is given first by non surgeons.
Severe deep endometriosis is relatively rare and is difficult level III surgery, performed by the small group of pelvic surgeons. If the referral for advanced surgery is not done adequately a series of problems occur. The diagnosis is made after a delay of several years, , and surgery is done without a CO2 laser , and incomplete with tissue damage. This results in recurrences, often treated with medical therapy, massive adhesions iatrogenic infertility and preventable IVF treatments. . A similar risk exists for cystic ovarian endometriosis with often severe ovarian damage as a consequence of inadequte surgery.
Surgery is the only effective therapy today and thus the methos of choice . Surgery however can have a dubious reputation. Indeed bowel resections are performed too frequently and too liberally, while inexperience can result in a stoma.
Endometriosis is not a cancer and the increased association between endometriosis and cancer is erroneous.

Why is the information on endometriosis often so contradictory ?

First some insight in the backgrounds of medical politics in endometriosis is important.for more info

First is is important whether endometriosis, defined by pathology as endometrial cells outside the uterus, is always a disease. as discussed in detail below.

Either typical cystic and deep endometriotic lesions are considered 3 different pathologies and 3 endpoints of a disease, without progress from one to the other, Endometriosis becomes a not recurrent disease, if surgery was complete. In addition the technical difficulty of laparoscopic excision of deep endometriosis has generated the concepts of the Pelvic Surgeon,
Considering all lesions as endometriosis has important consequences. First subtle lesions are considered (erroneously) a pathology and endometriosis becomes a progressive and recurrent pathology.

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 and many stakeholders as patients, gynaecologists, the farmaceutical industry, the insurances, and other less visible stakeholders. First surgery for endometriosis. With the development of endoscopic surgery, and the recognision of deep endometriosis as an entity, the perception of surgery has changed : whereas endometriosis surgery (laparotomy) used to be performed by all, deep endometriosis surgery has become level III -the most demanding- surgery in gynaecology. Simultaneously the emphasis of infertility centers has changed away from microsurgery toward IVF.
IVF centers began to downplay the role of surgery. . In the absence of adequate referrals, 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 Besides Medico-legal and big brother concerns, many realise the potential impact of auditing surgery.
The cost of a surgical intervention. Endometriosis surgery in Belgium, also the resection of a deep nodule, is reimbursed a few hundred euro in contrast with the 1000 euro of a bowel resection performed the cost is some 1000 euro. This might create some bias. Moreover psychologically the impression prevails that “more expensive must be better”. The selective increase of the reimbursement of severe endometriosis surgery requires some control to demonstrate severity.
Research in endometriosis obviously is important. But research requires money. Endometriosis considered a benign tumor (with subtle probably occurring intermittently in all women)would make research in implantation irrelevant. 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 the same concepts.

Those who promote the pelvic surgeon and who try to avoid bowel resections are a small group. Since deep endometriosis is a rare disease not that many surgeons are necessary to deal with the pathology.
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.
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.

Endometriosis consist of 3 diseases (with 3 types of lesions) – too often it remains considered 1 pathology.

Scientifically the pathophysiology still is debated and unknown. Clinically, as we wrote before , endometriosis should be considered as 3 different pathologies.

Pathophysiology

(for a more detailed discussion :download “epidemiology of endometriosis”)

This explains the wide range in incidences of endometriosis in women with pain or infertility

That 3 different gynaecologists deal with endometriosis results in a VARIABLE approach to diagnosis and treatment

Deep endometriosis is rare and
the group of pelvic surgeons is small

To see which specialist do what

The image to the right demosntrates that deep endometriosis is a rare condition,( and technically demanding) which only equires a few “pelvic surgeons” to deal with this. Superficial endometriosis is a frequent condition that only requires basic surgical skills : thus many gynaecologist will be involved in superficial endometriosis either with (simple) surgery, medical therapy or IVF.
Many basic surgeons and a few pelvic surgeons requires an adequate referral since most patients with deep endompetriosis will be seen first by the former. If referral is inadequate, deep endometriosis will be treated incompletely with medical therapy afterwards. If the disease is not recognised, IVF will be performed with a nodule in the rectovaginal septum, or medical therapy is given for long periods without a diagnosis.
Deep endometriosis thus has 3 problems : . If the gynaecologist does not have the required surgical skills, a bowel resection -often not necessary- . When deep endometriosis is not recognised and referred, surgey will be incomplete which makes subsequent surgery more difficult. In addition medical therapy oftenis given in order to avoid surgery, whereas incomplete surgery often is hidden by medical therapy after surgey.
We therefore need centers of excellent surgery. Centers of excellence as promoted by non surgeons risks to do more harm than good.

ENDOMETRIOSIS BASICS, everybody should know

The etiology is unknown : there is no such disease as “endometriosis” but instead according to the endometriotic disease theory Koninckx (1999) : following chomosomal damage endometrial cells will develop into typical, cystic or deep lesions, which all are end stages.This is an important discussion since subtle lesions can be considered a physiologic condition occurring intermittently in all women.
As explained abovce, endometriosis thus is not a progressive and recurrent disease.There are no data showing progression from 1 type to another ; Recurrence -of severe lesions- reflects inadequate surgery.
A cause of pain ? subtle no; typical: mild pain in 50% ;cystic ovarian : severe pain;deep : very severe pain in 95%
A cause of infertility ? subtle no, typical : ? , cystic yes , deep : ??
The absence of an animal model also the baboon is a hyped explains our lack of knowledge.
Hormone responsive tissue although slight differences with endometrium might exist

Why is the delay in diagnosis so long with so many mistakes ?? ??

Diagnosis should be made clinically based upon symptoms and Clinical Exam, on which in addition the decision to do a laparoscopy should be based. : Endometriosis should always be suspected when pain or infertility. Perineal pain is (almost) pathognomonic for deep endometriosis. Only large and low deep endo, or larger cysts can be felt by (menstrual) vaginal exam .

Things go wrong when decisions are based upon imaging as ultrasound and/or MRI
Ultrasound Extremely performant for cystic ovarian endo but with at least 15% mistakes of not diagnosing existing cysts and 15% of erroneously diagnosed cysts. Unclear value for deep endometriosis. Useless for typical endometriosis.

MRI and CAT scan : A research tool with limited clinical use to orient surgery
Markers Besides CA125, with sensitivity and specificity around 90% for cystic ovarian and deep endometriosis, there is only speculation. If misused they are potentially harmful.

Laparoscopy is the only adequate way of making a diagnosis and remains the gold standard
is the only way to diagnose typical endometriosis
is the final diagnosis of cystic ovarian endometriosissince ultrasound only can give a strong suspicion with 15% or more mistakes.
is required whenever deep endometriosis is suspected.

Surgery is the treatment of choice if the diagnosis is correct and the surgeon has experience.

When to do a laparosopy ? The decision is based upon symptoms of pain and or infertility and not on imaging techniques.
* if no pain and no infertility, the occasional finding of a cystic or deep endometriosis should at least be suspected to be an artefact. If confirmed by an expert, and persitent, a clinical decision should be taken.
* If infertility is the only symptom, we know that in 70% of women subtle and 50% typical endometriosis will be found. Whether this justifies a systematic diagnostic laparoscopy is still debated.
When laparoscopy has been decided : what are the minimal requirements If deep endo or severe adhesions are suspected, a bowel preparation is mandatory. If an hydronefrosis a ureter stent will be necessary. If more than 50% occlusion over more than 2-3cm of the sigmoid a segmental bowel resection should be planned(Only a contrast enema can give me reliably this information ), ie 0.5% of the rectovaginal/rectosigmoid deep endometriosis and in 10-15% of sigmoid endometriosis I operated.
How will surgery be done and what can you expect.For superficial endometriosis surgery should be vaporisation or excision kept minimal. When endometriosis surgery is unexpectedly difficult, being complication prone, either no surgery is performed and the patient is referred or surgery is performed provided the surgeon has the experience and a good team for assistance and follow up.
The major problems are too much bowel resections,( for me more than 1% low rectum resections and more than 20% sigmoid resections) and an incomplete surgery.The first surgery should be the last : therefore if the surgeon is unable to be complete it is preferable he does nothing. A CO2 laser is a definite advantage.
Recurrence rates are 25 % for typical, 5% for cystic and 1% for deep endo. A decreased ovarian function after surgery is almost always the consequence of inadequate surgery We consider that full videoregistration to document surgery and as a quality control should be mandatory for reimbursement.

Medical Therapy

Oral contraception is probably as good as any other therapy. GNRH and add back therapy can give pain relief but cannot be used over longer periods and thus are no real substitute for adequate surgery. Since it is unclear what should be done if after surgery pain persists documenting complete surgery by videoregistration is important. Aromatase inhibitors are an experimental drugs for endometriosis.
Medical treatment for longer periods without a diagnosis is a mistake.

Common mistakes

Those who do not operate, risk to downplay the role of surgery . First we do not like what we do not know, whereas most gynaecologists have difficulty to say ‘This I do not know ‘ or ‘This I cannot do’. This may result in delayed referral while the risk of giving medical treatment for unnecessarily long periods increases.
Worse is the shift of attention away from surgery. Surgeons overall are poorly represented in organizations and boards (for reasons of time. Overall they do less basic research and tey obviously are poorly supported by the pharmaceutical companies. This results in too much attention for research and medical therapy, which detracts attention away form surgery. This for the patients may do more harm than good .
Missed diagnosis either clinically or during surgery This depends on experience and is another argument for videoregistration
Incomplete surgery The most difficult interventions are those after an incomplete previous intervention.
Non necessary segmental bowel resections Low rectum resections are almost never necessary and are associated with a high complication rate (30% bowel problems ;30% bladder problems; up to 40% sexual problems and all this life long
IVF with a deep rectovaginal nodule.This is the second group of extremely difficult surgery, ( as a consequence of endometriosis activation ?)
The worst mistake is to remove the uterus and the ovaries leaving the endometriosis behind as still is performed too often