Symptoms and Diagnosis of endometriosis


Symptoms and surgery vary with the type of endometriosis

Endometriosis and pain

If pain

  • 50% of women have typical and or subtle lesions
  • if very severe pain: more cystic and deep endometriosis


Endo and Infertility

  • +++ for cystic ovarian endometriosis
  • + for typical and deep endometriosis
  • no effect (?) of subtle or microscopical endometriosis
  • other forms
    • adenomyosis - pockets : decreases fertility variably

If infertility

  • 50% probability of typical lesions
  • all other causes remain possible

Conclusion 1

  • when pain or infertility : 50% of women have endometriosis
    • Important is Localization and radiation that suggest cystic ovarian and deep endometriosis
    • thus all women with pain or in fertility are suspected to have endometriosis
  • Other symptoms, often quoted on web-sites and lay press, have little proven evidence.  eg abnormal or heavy Uterine Bleeding. Gastrointestinal symptoms as abdominal bloating or nausea.


Type of pain

  • Generally dysmenorrhea
  • sometimes chronic pain
  • deep dyspareunea if a low deep endometriosis or a low situated cystic ovarian endometriosis is present.

Localization of pain :

  • hypogastric pain generally radiating to the back ;
  • radiation in the anterior part of the upper leg suggests cystic ovarian endometriosis
  • perineal pain is pathognomonic for deep endometriosis
  • dyschesia, i.e. bowel cramps and pain during menstruation, or menstrual blood loss on the stools. Also cyclic diarrhoea and/or constipation can be suggestive.
  • Urinary symptoms. Frequency, urgency, bladder pain, and occasionally bloody urine may occur when endometriosis has involved the bladder.
  • Endometriosis invading the ureter causing obstruction can cause ureter pain.

Step 2 : Clinical exam - ultrasound-  other investigations

Clinical exam : diagnosis of endo in less than 50%clinical diagnosis of deep endometriosis

  • Subtle Endometriosis is not felt.
  • Typical Endometriosis can occasionally be felt as shots
  • Cystic ovarian Endometriosis.  Only larger cysts can be felt by clinical exam.
  • Deep Endometriosis. Clinical exam detects only the very large  and low lesions. Important is the importance of a clinical exam during menstruation

A negative clinical exam cannot exclude endometriosis


Conclusion 2

  • If you have an endometrioma, this will be diagnosed by US in more than  90%. 
  • A cystic corpus luteum gives a false positive diagnosis.
  • Cancer cannot be excluded. However the risks is very small in women younger than45 years
  • Conclusions : Ultrasound imaging has to be interpreted in the clinical context.Therefore ultrasound should be performed by or  in close collaboration with the surgeon.
  • Malignancy ? The data demonstrate that some 3% of the endometrioma’s are malignant in women after menopause,

Other exams as Cat-scan, Colonoscopy and MRI

These exams are only useful as a preparation for surgery, but limited for diagnosis.

adenomyosis of the junctional zone

  • Cat-scan and colonoscopy can detect very large nodules of deep endometriosis when occluding the bowel. This however is extremely rare.
  • MRI is overused  for endometriosis and for pain in general.
    • For superficial endometriosis MRI is not useful.
    • For cystic ovarian endometriosis these exams are not superior to ultrasound.
    • For deep endometriosis the larger nodules will be detected, depending on the expertise of the radiologist. MRI however rarely gives information on bowel invasion. Intra-luminal MRI to judge the infiltration of a deep endometriosis in the bowel wall is often used as an alibi to do a bowel resection.
    • MRI is useful for diagnosing adenomyosis, as a thickened junctional zone, or as a focal adenomyosis

Decision tree for Diagnosis

  • The first decision, is whether a laparoscopy should be planned
    • This decision is clear when a deep nodule has been felt, when a cystic ovarian endometriosis was diagnosed at ultrasound, or when a deep nodule was clinically suspected because of severe pain
    • The decision is clinical in all other women with pain and/or infertility. Important elements are perineal radiation is almost pathognomonic for deep endometriosis. Radiation to the anterior part of the upper leg suggests ovarian pathology.
  • The second decision, after a laparoscopy is planned, is which additional exams should be done and how surgery should be planned
    • If deep endometriosis is not suspected a bowel preparation is not necessary and surgery can be done as day care.
    • If deep endometriosis is suspected, additional exams as contrast enema and IVP, and a bowel preparation before surgery are mandatory. IVP diagnoses hydronefrosis i.e. whether ureter stents are necessary. A contrast enema diagnoses bowel occlusion. The degree and length of occlusion predict the difficulty of surgery, and thus for the informed consent.
  • Laparoscopy is the gold standard for diagnosis.
    • The usefulness of magnetic resonance to predict surgical difficulty is limited.
    • Too often it is used as a alibi to do (unnecessary) bowel resections

Why is the delay in diagnosis long.?

  • the gynecologist needs experience to suspect Endometriosis : we only recognize what we know.
  • the non-surgeons exaggerate medical treatment to avoid surgery, 
  • endometriosis surgery is difficult and pelvic surgeons are rare. Less experienced surgeons  often prefer to give medical therapy before referring the patient.
  • The belief that all endometriosis can be diagnosed by anything else than by a laparoscopy
  • The biggest problem is that the difficulty of surgery is difficult to predict. Therefore I introduced Oxford that the ex-fellows could perform a diagnostic laparoscopy and judge if they could do the surgery;  if not, they refer.

Mistakes and half treatments

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  • Medical treatment for long periods of time without a diagnosis in women with pain.
  • Gynecologist who believe that  subtle lesions cause pain or infertility 
  • Superficial coagulation of typical lesions  since often incomplete .
  • Drainage of cystic ovarian endometriosis 
  • Miss-diagnosis of a cystic corpus luteum 
  • Destruction of the ovary,  by lack of experience.
  • Missing Deep endometriosis.
  • Incomplete excision of deep endometriosis by lack of experience and by fear of complications. This results in a second surgery, which moreover is much more difficult.
  • Unnecessary rectum resection for recto-vaginal endometriosis
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