Definition of endometriosis ?
Endometrium is the tissue lining the inside of the uterus. The endometrium grows and is shedded every month during menstruation. Endometriosis is defined as endometrial stroma and glands outside the uterus . This definition needs to be revised since subtle endometriosis is not pathology
Adenomyose is endometrial stroma and glands in the myometrium of the uterus
Summary of the pathophysiology of endometriosis
Growth of endometriosis lesions
After a cumulative number of genetic/epigenetic incidents the endometriosis lesions start to grow. Development varies with the underlying genetic-epigenetic mutations. Growth varies in addition with the genetic:epigenetic incidents transmitted at birth such as immunologic defects and with the monthly oxidative stress of bleeding in the lesions.
Consequences of the genetic-epigenetic theory
- We understand the problems during pregnancy
- Endometriosis lesions are clonal and thus small benign tumors
- The different types of lesions have a different set of genetic/epigenetic incidents.
- Similar looking lesions can have different genetic/epigenetic incidents such as progesterone resistance. They thus can react very differently to hormonal treatment
- at the moment of diagnosis most lesions are no longer progressive
- no recurrences after complete excision
The mistakes of the past the Sampson theory
The diagnosis in 4 steps
1. Suspicion based on symptoms, clinical exam and ultrasound
Endometriosis should be suspected in all women with pain or infertility. Symptoms and localisation of pain can be suggestive but cannot make the diagnosis !!
Clinical exam can detect
- cystic endometriosis if larger than 4 cm
- deep endometriosis if low and big
- cannot detect superficial exclude endometriosis
- is the method of choice to diagnose cystic ovarian endometriosis
- can diagnose larger deep endometriosis lesions but false positives and false negatives require clinical intepretation
- can diagnose adenomyosis
- cannot exclude endometriosis
2 : The decision to perform a laparoscopy
- The decision is based on the suspicion aided by Ultrasound or MRI
- followed by additional exams and preparation for surgery,
- informed consent .
3 : Diagnostic Laparoscopy and surgery
- If is an advantage that the gynecologist has the skills to do surgery if necessary
- if not the patient should be referred. Better no surgery than incomplete surgery.
- The gynecologist needs the expertise to recognise all forms of endometriosis
4 : Medical treatment
- eventually following a laparoscopy and surgery
- medical treatment without a diagnosis for a long time is wrong.
3 Different Specialists for endometriosis
The Fertility Specialist
Fertility specialists are generally IVF specialists with only a basic surgical training, sufficient for superficial endometriosis, ie for the most frequent pathology. Cystic ovarian endometriosis is erroneously considered easy surgery. Reality however is that insufficient experience often results in ovarian damage and loss of oocyte reserve. For deep endometriosis they generally perform bowel resections together with the surgeons.
The medical therapy specialist
Many gynaecologists are mainly involved in medical therapy. They try to avoid surgery and/or only perform only basic surgery, ie without bowel and ureter involvement. Deep endometriosis is a rare condition. 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.
The pelvic surgeon.
They do advanced laparoscopic surgery for deep endometriosis involving the bowel and the ureters. This is obviously a small group, since deep endometriosis is not that frequent and since only a small group can have sufficient experience.
What we need is
- Adequate referral.
- Centres of excellent surgery. Centres of excellence without excellent surgery often to do more harm than good.
Surgical treatment of endometriosis
- provided all endometriosis is recognised and removed
- which requires a gynecologist with expertise and surgical skills
- better no surgery than incomplete surgery. If the gynecologist has not the necessary skills the patient should be referred to a pelvic surgeon
- But no surgery is better than bad surgery :the first surgery should be the last
Video-registration is the only way to judge quality of surgery
Medical treatment of endometriosis
- Medical treatment will never cure endometriosis
- It can decrease activity but not in all lesions
- It therefore can decreases pain but not in all and only temporarily
Complications of medical treatment of endometriosis
- weight gain by progestagens or osteoporosis secondary to GNRH
- bowel occlusion or bowel or bladder perforation by a deep endometriosis during pregnancy
- continued progression of (some) endometriosis lesions) during medical therapy
- Hysterectomy and ovariectomy without complete removal of the endometriosis
Wrong information on endometriosis
- Endometriosis should not be considered progressive and recurrent
- Medical treatment should not be given without a diagnosis
- Surgery is avoided by those without the skills
- Surgery in less skilled hands, has a high complication rate and Incomplete surgery has a high recurrence rate
- Medical therapy of endometriosis is a ‘billion dollar business’ .
- Infertility surgery used to be microsurgery in specialised centres. Today laparoscopic fertility surgery is minimal and infertility centres became IVF centres.
- Less skilled surgeon fear the quality control by video-registration .
- The low reimbursement of endometriosis surgery favors bowel resections. Deep endometriosis surgery in Belgium is reimbursed a few hundred Euro in contrast with the 1000 Euro of a bowel resection.
- Medical treatment is often given to erroneously prevent progression of subtle endometriosis
A delay in diagnosis of endometriosis
The mean delay in diagnosis is 7 years since
- a laparoscopy is avoided if the gynecologist does not have the skills to do surgery
- medical treatment is given for many years without a diagnosis
The gynecologists-Pelvic Surgeons, are a small group. We need of centres of excellent surgery of endometriosis,
Centres of excellence in endometriosis unfortunately are supported fro the wrong reasons.
- The concept of pelvic surgeon does not fit with the sub-specialities in gynaecology.
- Inadequate referral of deep endometriosis, since avoidable bowel resections can be done in every hospital by the bowel surgeon
- The Infertility lobby. Good surgery is a prevention of IVF and an IVF baby is more expensive than a surgery baby.
- Oncologist are opposed to the concept of the pelvic surgeon since this would comprise oncologic surgery.
Surgery can be difficult and requires extensive training. Therefore medical therapy is given by non surgeons.
If a diagnostic laparoscopy or 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 incompletely with ovarian damage and adhesions.
- This results in recurrences, often treated with medical therapy, iatrogenic infertility and preventable IVF treatments.
- Endometriosis is not a cancer and the increased association between endometriosis and cancer is clinically irrelevant.