Endometriosis Overview

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 glandsin the myometrium of the uterus

Endometriosis causes confusion and information seems contradictory : 4 lesions, 2 symptoms, 3 medical docters.

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

Fundamental is that there is no such thing as endometriosis : there are 4 lesions ranging from minimal to very severy with a prevalence from 80% to 1%

The clinical apperarance varies from superficial endometriosis (subtle endomeriosis, typical endometriosis) to chocolate cysts in the ovary tot deep endometriosis

Prevalence varies from 80% for subtle , 40% for typical, 15% for cystic and 1% for deep.

Causes pain and infertility : two mainstream gynaecological complaints

But symptoms vary with the type of endometriosis : subtle endometriosis has no symptoms , typical some infertility and some pain in half of the women only, cystic ovarian endometriosis de kystische endometriose causes severe pain and infertility, but not in all women, while deep endometriosis causes very severe pain (but not in 5%) and possibly infertility.

Endometriosis is treated by 3 specialists, some with infertility (and less surgery), the surgeons and those dealing with medical therapy

To see which specialist do what

Superificial endometriosis is easy surgery and can be done with a basic training in endoscopic surgery. When fertility spoecialists talk about endometriosis they generally refer to superficial endometriosis, which is rather common.

Deep endometriosis is rare is technically the most demanding surgery and requires the highest surgical level because of the involvement of bowel and ureters. Since rare and very difficult the gynaecologists having experience in deep endometriosis without doing excessive bowel resections, are a small group, today called ‘pelvic surgeons’ .

This has for the patient 2 consequences : variable therapy and delayed diagnosis

With several negative consequences : Minimale endometriosis is often overtreated by too aggressive surgety, too long unnecessary medical therapy and too much IVF
Deep endometriosis surgery is often incomplete, making subsequent surgery more difficult, or is too frequently treated by bowel resections. Often medical therapy is given erroneously to to avoid surgery or after surgery was done incompletely. .

BASICS, everybody should know

The etiology is unknown : eihter 1 disease according to the implantation-metaplasia theory Sampson theory (1921) or several diseases according to the endometriotic disease theory Koninckx (1999) : Endometrial cells with chomosomal damage will develop into typical, cystic or deep lesions.This is an important discussion since subtle lesions can be considered a physiologic condition occurring intermittently in all women.
Endometriosis 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 sis made clinically based upon symptoms and Clinical Exam : Endometriosis should always be suspected when pain or infertility. Perineal pain is (almost) pathognomonic for deep endo. Only large and low deep endo, or larger cysts can be felt by (menstrual) vaginal exam .

Ultrasound Extemely performant for cystic ovarian endo. Unclear value for deep endometriosis. Useless for typical endometriosis.
Contrast enema and IVP to diagnose hydronefrosis and to decide when an elective segmental sigmoid resection will be necessary.

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 Remains the gold standard
subtle endometriosis :Is not a disease – no data for pain or infertility.
typical endometriosis: A laparoscopic diagnosis. Can occasionally be suspected clinically
cystic ovarian endometriosis: Ultrasound is sufficient.
deep endometriosis. Is either diagnosed or suspected clinically.

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

When to do a laparosopy ? The indications are pain or a cystic ovarian endometriosis diagnosed by ultrasound. 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