Symptoms and Diagnosis of endometriosis
Prevalence of endometriosis varies with the type of endometriosis
Endometriosis symptoms vary with the type of the endometriosis
- very very severe for deep endometriosis in 95%
- very severe for cyctic ovarian endometriosis in 80%
- variable for typical endometriosis
- no pain for subtle endometriosis
Infertility and endometriosis
- +++ for cystic ovarian endometriosis
- + for typical and deep endometriosis
- no effect of subtle or microscopical endometriosis
- Superficial endometriosis with little complaints is very frequent and is treated by many gynaecologists, especially fertility specialists. Surgery is not difficult and requires basic training only
- Deep endometriosis is rare and surgery is very difficult. Only a few (pelvic) surgeons have the expertise .
- The surgical risk of cystic ovarian endometriosis is ovarian damage and adhesion formation and subsequent infertility.
- If referral is not done medical therapy without diagnosis and without surgery is given or incomplete surgery with avoidable bowel resections are done.
Pain symptoms of endometriosis
Type of pain for details see first visit
Generally dysmenorrhea ;
sometimes chronic pain ;
deep dyspareunea if a low deep endometriosis or a low situated cystic ovarian endometriosis is present.
Localization of endometriosis pain :
- hypogastric pain generally radiating to the back ;
- pain radiation in the anterior part of the upper leg suggests cystic ovarian endometriosis
- perineal pain radiation 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.
Diagnosis of endometriosis : step 1 suspicion of endometriosis
Symptoms of the patient : a suspicion of endometriosis
- All women with pelvic pain are suspected to have endometriosis
- Localisation and radiation of pain can suggest cystic ovarian and deep endometriosis
Other symptoms are often quoted on web-sites and lay press but without proven evidence. Abnormal or heavy Uterine Bleeding. Gastrointestinal symptoms as abdominal bloating or nausea.
Clinical exam : diagnosis of less than half of endometriosis
- Subtle Endometriosis can never been 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 can detect only the very large low lesions. Important is that at clinical exam during menstruation much more nodules are found, an exam that should be done routinely in women with severe pain
- Cystic ovarian endometriosis . Ultrasound is the perfect exam for cystic ovarian endometriosis. Specificity of the exam (the risk that a cystic ovarian endometriosis is missed) is nearly 100%, and the specificity (the risk that the diagnosis is false positive) is also very high .
- Deep endometriosis . The value of ultrasound it is less clear . Ultrasound will detect the larger and lower situated deep endometriosis, but has difficulty with higher lesions, with smaller lesions and after previous surgery. Data suggest that specificity and specificity are between 80% and 90%. This practically means that ultrasound can suggest endometriosis (especially when the ultrasonographer is experienced) but that the exam should be interpreted carefully.
For cystic ovarian endometriosis read the original review article by Van Holsbeke et al
- If you have an endometrioma, this will be diagnosed by US in 80% ie some 20% are missed.
if you do not have an endometrioma , the risk of a false positive diagnosis will be some 3%
if on ultrasound an endometrioma is found you have 90% to have an endometrioma, and 10% to have something else
- Conclusions : Ultrasound imaging has to be interpreted in the clinical context.Therefore it becomes important that the ultrasound is performed by the surgeon or in close collaboration with the surgeon. Malignancy ? The raw data of cystic ovarian endometriosis ultrasound demonstrate that some 3% of the endometrioma’s turned out to be malignant, This is not a real problem since in women before menopause the risk of malignancy is less than 0.5%, and in women less than 40-45 years almost in-existent.
Other exams as Cat-scan, Colonoscopy and MRI
Other exams are useful as preparation for surgery, not for diagnosis.
- Cat-scan and colonoscopy can detect large nodules of deep endometriosis when occluding the bowel. This however are extremely rare findings.
MRI is widely used -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 to detect adenomyosis either as a thickened junctional zone, or as a focal adenomyosis
Decision tree for Diagnosis of endometriosis
- The first clinical decision, is whether a laparoscopy should be planned
- The decision to perform a laparoscopy 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. .
- 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 what 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 is necessary to diagnose hydronefrosis something which will decide whether ureter stents are necessary at the beginning of surgery. A contrast enema is necessary to diagnose an eventual bowel occlusion and sigmoid involvement. The degree of occlusion, and the length of invasion are important to predict the difficulty of surgery, the duration of hospitalisation and thus for the informed consent.
- Today the laparoscopy remains the gold standard.
- 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 often so long.?
- First the gynecologist needs experience to suspect Endometriosis : we only recognise what we know.
- Second, the non-surgeons emphasise the importance of medical treatment to avoid surgery, Thus in over 90% without a diagnosis,
- Third, endometriosis surgery is difficult with few pelvic surgeons . Less experienced surgeons often prefer to give medical therapy before referring the patient.
- A widespread mistake is the belief that endometriosis can be diagnosed by anything else than by a laparoscopy
- The biggest problem is that the difficulty of surgery is difficult to predict . The best model s the model we adopted in Oxford : the ex-fellows perform a diagnostic laparoscopy : if they can do, they do ; if not, they refer.
Mistakes and half treatments
- Medical treatment for long periods of time without a diagnosis in women with pain.
- Gynaecologist who believe that subtle lesions cause pain or infertility
- Superficial coagulation of typical lesions since often incomplete .
- Drainage and superficial coagulation of cystic ovarian endometriosis
- Not recognising a cystic corpus luteum and treat this as endometriosis
- Destruction of the ovary. This occurs much too often by lack of experience.
- Deep endometriosis is often missed.
- 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.
- An avoidable rectum resection for recto-vaginal endometriosis