What is 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 . Adenomyose is endometrial stroma and glands in the myometrium of the uterus
Endometriosis is not 1 disease
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Lesions are very variable : see images. According to the Endometriotic disease theory type of lesion depends on the cell mutation (similar to all benign tumours)
- adenomyosis, peritoneal pockets, müllerianosis
- ovarian remnant
Endometriosis is not a progressive disease
- Subtle endometriosis is not a disease, but a normal condition occurring intermittently in all women.
- At the moment of diagnosis most endometriosis lesions are no longer progressive.
- Some deep endometriosis can be very active and rapidly progressive.
- There is no evidence that minor lesions develop into severe lesions
Not a recurrent disease : after complete excision recurrence rates are
- 1% for deep endometriosis
- 5% for cystic endometriosis
- 20 % for typical endometriosis
Diagnosis : clinically suspected but a laparoscopy is needed
1. Symptoms, clinical exam and ultrasound = suspicion
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 is limited
- cystic endometriosis : if larger than 4 cm
- deep endometriosis : only if low and big
- cannot exclude endometriosis
- is the method of choice for cystic ovarian endometriosis
- can diagnose deep endometriosis but with a 10% mistake , both false positives and false negatives
- can diagnose adenomyosis
- cannot exclude endometriosis
Only a Laparoscopy can make the diagnosis
2 : The decision to perform a laparoscopy
- The decision is taken based upon symptoms and clinical exam
- aided by Ultrasound or MRI
- followed by additional exams and preparation for surgery,
- informed consent .
Treatment during diagnostic laparoscopy
3 : Diagnostic Laparoscopy and surgery
- surgery can be performed immediately If the gynecologist has the skills
- if not, only a diagnostic laparoscopy and referral. 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
- no medical treatment without a diagnosis .
Surgical treatment of endometriosis
- provided all endometriosis is recognised and removed
- which requires a gynecologist with the expertise and the 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
Video-registration permits to judge quality of surgery
But no surgery is better than bad surgery :the first surgery should be the last
Medical treatment of endometriosis
- Medical treatment never cures endometriosis
- It can decrease activity similar to a menopause by lack of estrogens or decidualisation
- It generally decreases pain, at least temporarily
Risks 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
- progression of (some) endometriosis lesions)during medical therapy
- Hysterectomy and ovariectomy without removal of the endometriosis ; with in addition no subsequent hormone replacement
Pathophysiology of endometriosis
This explains the wide range in incidences of endometriosis in women with pain or infertility
Wrong information on endometriosis
- Endometriosis is erroneously considered progressive and recurrent
- Medical treatment is often given without a diagnosis
- Surgery is avoided
- Surgery in less skilled hands, has a high complication rate and Incomplete surgery has a high recurrence rate
- Endometriosis is a ‘billion dollar business’ . It is a frequent pathology, with many stakeholders as patients, gynaecologists, the pharmaceutical industry, the insurances, and others.
- Infertility surgery used to be microsurgery in specialised centres. Today laparoscopic fertility surgery is minimal and infertility centres became IVF centres.
- Quality control of surgery by video-registration meets strong opposition .
- The low reimbursement of endometriosis surgery. Deep endometriosis surgery in Belgium is reimbursed a few hundred Euro in contrast with the 1000 Euro of a bowel resection. The psychological bias is that “more expensive is better”.
- Subtle endometriosis. If subtle is not a pathology medical treatment is not important to prevent progression.
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 in endometriosis, not centres of excellence in endometriosis. The large majority is opposed to this concept albeit for various reasons.
- The bodies involved in education and accreditation The concept of pelvic surgeon does not fit with the sub-specialities in gynaecology.
- Inadequate referral of deep endometriosis. since 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.
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.
The diagnosis of deep endometriosis is easily missed
Without a laparoscopy diagnosis of deep endometriosis will not be made in over 80% of women. Since the number of pelvic surgeons is small, most women with deep endometriosis will be seen first by other specialists. If deep endometriosis is not clinically suspected and a laparoscopy is not performed
- IVF will be performed with a nodule in the recto-vaginal septum,
- or medical therapy is given for long periods without a diagnosis
If a laparoscopy is performed by a non-surgeon
- deep endometriosis risks not to be recognized
- surgery risks to be incomplete with afterwards medical therapy. In addition subsequent surgery will be more difficult.
- a large number of avoidable bowel resection are performed.
What is needed
- Adequate referral.
- Centres of excellent surgery. Centres of excellence without excellent surgery risk to do more harm than good.
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 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 inadequate surgery.
Surgery is the only effective therapy today and thus the method 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.