Syptoms and Diagnosis of endometriosis
|Symptoms of endometriosis||Clinical exam-ultrasound||Other exams||Laparoscopy||Delay of diagnosis||Common mistakes|
To understand symptoms and diagnosis it is important to know the 4 types of endometriosis
|Types of endometriosis
||Subtle Endometriosis||in 80% of women
|Typical Endometriosis||in 30-50% of women||pain + in 50%||infertility++|
|Endometriosis of the ovary||Cystic Endometriosis||in 15-20% of women||pain ++ in 70%||infertility +++|
|Solid tumors||Deep Endometriosis||in less than 5%||pain +++ in 95%||infertility ++|
Superfical endometriosis with little complaints is very frequent and is dealt with by many gynaecologists Pain is less severe and occurs in only half of the women with superficial endometriosis The relationship with infertility is not that clear. Surgrey is not difficult and requires basic training only
Deep endometriosis is a rare pathology with severe pain and is very difficult surgery. Thus only a few (pelvic) surgeons have the expertise . Cystic ovarian endometriosis is surgically medium level with severe pain and a clear cause of infertility.
A lot of simple pathology and many gynecologists versus a rare and severe pathology and a few surgeons
Obviously the ‘opinion-voice’ of many is more heard than the voice of a few.
If referral is not done adequately this results in prolonged medical therapy without surgery or in incomplete surgery, or in avoidable bowel resections.
Als men zegt dat Endo as a cause if infertility : yes for cystic avarian endometriosis; unclear for Typical and deep endometriosis
In women with pain, endometriosis does not always explain the pain
In women with infertility : endometriosis does not always explain the infertility.
Symptoms of the 4 types of endometriosis
Subtle endometriosis clearly does not cause infertility.
Typical endometriosis is associated with infertility but it still remains debated whether typical lesions cause infertility.
Cystic ovarian endometriosis is a clear cause of infertility because of the associated adhesions
The relationship between deep endometriosis and infertility is unclear
Pain symptoms of endometriosis
Localisation of pain> pain generally radiating to the back ; radiation in the anterior part of the upper leg suggests cystic ovarian endoemtriosis ; perineal radiation is pathognomonic for deep endometriosis as is dyschesia, ie bowel cramps and pain during mensturation, and as is menstrual blood loss on the stools. Also cyclic diarrhea and/or constipation can be suggestive.
Important to know is that pain is variable and not all lesions of endometriosis are painful. Even in deep endometriosis some 5% of the lesions are not painful.
Urinary symptoms. Frequency, urgency, bladder pain, and occasionally bloody urine may occur when endometriosis has involved the bladder. Endometriosis invading the ureter (tube between the kidney and the bladder) may cause obstruction of the ureter, and damage the kidney.
The degree of pain is not related to the size of the endometriosis : large areas can cause little pain whereas small ares can cause a lot of pain.
Symptoms of the different types
Subtle Endometriosis does not cause pain nor infertility. The laparoscopic finding should be considered ‘accidental’ without clinical significance. In dedicated hands, subtle endometriosis is found in almost all women and the major problem is that too often this is considered a pathology.
Typical Endometriosis can occasionally be suspected by clinical exam. Only laparoscopy can make the diagnosis. Imaging as ultrasound, CAT scan or MRI are useless for the diagnosis
Cystic ovarian Endometriosis Larger cysts can be felt by clinical exam. The diagnosis is made by ultrasound. Sometimes the differential diagnosis with a cystic corpus luteum can be difficult. It is unclear if other techniques as blood flow analysis, CAT scan or MRI are really helpful.It is important that the diagnosis is made before laparoscopy, in order to know whether these cyst should be orerated or not : an endometrioma should be operated, a cystic corpus luteum should not be operated, since it disappears spontaneously, and since surgery can cause postoperative adhesions.
Deep Endometriosis Clinical exam can detects the very large lesions. The smaller lesions generally remain undetected. The most powerful diagnostic method is the clinical exam during menstruation. Imaging as ultrasound, CAT scan or MRI can help in the diagnosis but the added value is low. It is important that the diagnosis is made before laparoscopy in order to plan surgery. Surgery of deep endometriosis indeed can be very difficult, is potentially dangerous and should never be performed unless the bowel has been fully prepared, permitting bowel surgery. Also, if a menstrual clinical exam reveals deep endometriosis the surgeon preferentially should be able to perform the surgery which is anticipated.
Symptoms that are often quoted on web-sites and lay press but -to the best of my knowledge- without proven evidendence Abnormal Uterine Bleeding. A women with endometriosis may have some vaginal spotting a few days before and/or after her period, or she may have abnormally heavy and long periods.Gastrointestinal symptoms as abdominal bloating or nausea .
Clinical exam and Ultrasound Examination
Superficial endometriosis, ie subtle and typical endometriosis, cannot be detected by clinical exam nor by ultrasound. Occasionally some suggestive indurations in the uterosacrals can be felt.
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 daignosis is fase positive) is also very high . Clinically only cysts of more thatn 2-3 cm can be felt.
Deep endometriosis . Clinically only the lower situated and larger deep endometriosis will be felt. We demonstrated that of the larger only 50% and of the smaller only 20% are felt during clinical exam. Important is that at clinical exam during menstruation much more nodules are found, an exam that should be done routiunely in women with severe pain. 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 a detailed discussion on the diagnostic accuracy of ultrasound and of MRI please read the articles or the experts Prof D. Timmerman of Leuven, Dr C. Exacoustos of Rome, and Dr Bazot of Paris.When reading these articles you will find that it rather difficult for the non expert to interpret.
The ultrasound diagnosis of cystic ovarian endometriosis could be summarised as follows : To 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
The expertise of the ultasonographer is very important , as demonstrated repetitively.
Ultrasound imaging has to be interpreted in the clinical context.These data are based upon analysis of ultrasound imaging. In reality these data are interpreted in the clinical context ie together with the clinical symptoms and the age of the patient. In addition during laparoscopy, the visual aspect of the ovarian cyst is taken into account . Therefore, the reliability of ultrasound used in a global clinical context is much higher than the raw data would suggest .
Malignancy ? The raw data describing ultrasound diagnosis of cystic ovarian endometiosis ultrasound demonstrate that some 3% of the endometrioma’s turned out to be malignant, something that could be interpreted as a real problem. Clinically however, 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 inexistent. Therefore cystectomy of an a cystic ovarian endometriosis does not carry a real risk of malignancy, whereas after the age of 45 and certainly after menopause anyway an adnexectomie is performed instead of a cystectomy?
Other exams as Cat-scan, Colonoscopy and MRI
Cat-scan and colonoscopy can detect large nodules of deep endometriosis when occluding the bowel as shown on the right. This however are rare findings without any additional value when a contrast enema was done.
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 obstruction. Some authors use intra-luminal MRI to judge the infiltration of a deep endometriosis in the bowel wall. This however will not change the clinical decision when the surgeon has the expertise to do a discoid excision. It however, 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 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 suggested at ultrasound.
The decision is clinical in all other women with pain and/or infertility. Knowing that symptoms are variable and that clinical and ultrasound diagnosis may be erroneously wrong, the decision is clinical and difficult. It is based in addition to the symptoms, the clinical exam and the ultrasound, upon the duration of infertility and/or the severity and radiation of the pain. Important elements are
Perineal radiation is almost pathognomonic for deep endometriosis
Radiation to the anterior part of the upper leg suggests ovarian pathology.
In deep endometriosis the clinical exam is negative in 50% to 80%. A menstrual clinical exam is useful.
Ultrasound is perfect for the diagnosis of cystic ovarian endometriosis.
Once a laparoscopy is planned, the second decision is what additional exams should be done and how surgery should be planned
If deep endometriosis is not suspected a bowel prepartion 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 predit the difficulty of surgery, the duration of hospitalisation and thus for the informed consent.
For deep endometriosis involving the rectum, sigmoid or the ureter the surgical team should have the expertise to do the surgery and the follow-up.
For deep endometriosis of the rectum smaller lesions the risk of a muscularis lesion is some 20%, the risk to open the bowel less than 5% . For larger lesions the risk of a muscularis lesion becomes 70% witha risk to open the bowel of 50%. A bowel resection is needed in less than 1%.
For deep endometriosis of the sigmoid even small lesions carry a high risk of muscularis lesion and or bowel perforation. Overall some 10% of bowel resections are necessary.
If there is a nodule of the rectum AND of the sigmoid, surgery in 2 stages should be considered.
In case of hydronefrosis, endometriosis has to be resected completely and a stent should be left for 6 weeks
Deep endometriosis of the bladder is not a major problem since the badder heals well. A catheter should however be left for at least 7 days.
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. The same holds true for the ultrasonografist, who should not miss an endometrioma
Second, Conservatism of the non-surgeons who emphasise too much the importance of medical treatment, is a major problem. This results in
Too long medical therapy without a diagnosis, which we consider as something to be avoided.
De lobbying of the industry helps in this
The third problem is that endometriosis surgery can be really difficult . (level 3). Therefore less experienced surgeons suspecting severe Endometriosis often prefer to give medical therapy before referring the patient.
Also the scientific literature is a cause of confusion for the general gynedologist and for the patient. The literature describes specifically the diagnostic accuracy of MRI, rectal MRI, CAT scan : it is difficult for the non-specialist to put this is perspective. It indeed is difficult to find an article who describes the ‘added value of a technique.
This results in promotion of techniques with insufficently proven clinical usefulness.
A widespread mistake is the belief that endometriosis can be diagnosed by anything else than by a laparoscopy
For cystic ovarian endometriosis this is true. Over 95% will be diagnosed by ultrasound
Subtle and typical : can only be diagnosed by laparoscopy
Deep endometriosis : cannot be diagnosed in over 50% without a laparoscopy.
Why is endometriosis so hyped with so much support groups ?
Diagnosis and treatment remain problematic
The biggest problem arises from not taking into account the prevalence and the severity of pain symptoms (zie above) Especially, subtle endometriosis and also typical endometriosis are very frequent lesions which occur in over 80% of women with pain and infertility. Not taking into account the severity and localization of symptoms and not knowing that in over half of them the pain and infertility is not caused by the endometriosis results in unnecessarily long medical treatment. If then finally a laparoscopy is performed, this will be done by a gynaecologist with only a basic surgical experience, generally without a laser, and often over-aggressive surgery will be performed with the risk of massive adhesions leaving only IVF as an alternative for fertility treatment.
Also the diagnosis of deep endometriosis is often missed since deep endometriosis is generally not detected at clinical exam nor at ultrasound. To emphasise that this is relly difficult this personal story. I was the first to describe deep endometriosis in 1990 (thus I missed myself for many years before that) and only after 1993 we realised that this was more frequent than anitcipated. After this , this international group developed the surgery for deep endometriosis . It therefore is not surprising that many gynaecologists do not have the training to treat this pathology, with thus incomplete or overaggressive surgery, eg a bowel resection.
De Infertility specialist overall does not have the skills for advanced surgery.
The infertility specialists generally deals predominantly if not only with subtle and typical endometriosis. The infertility specialists has evolved during the nineties from a microsurgeon to an IVF specialist. Since subtle and Typische endometriosis are so frequent, this is what he mostly if not exclusively sees, with as consequence often overaggressive surgical therapy.
Few have the skills of treating deep endometriosis, even few have the skills to treat cystic ovarian endometriosis without damaging the ovary.
IVF is generally used too liberally and themost frequent mistake is to do IVF with a deep nodule in the rectovaginal septum.
IVF met een diepe nodulus is zelfs een fout.
De pain specialist
The non- surgeons tend to give medical treatment for too long before doing a laparoscopy or referring the patient
The prevalences of endometriosis are reflected in the gynaecologists : most are trained to treat superficial lesions. Many think to be able to treat cystic ovarian endometriosis although this is rather difficult surgery. Deep endometriosis is a relatively rare disease and those who with experience, ie thos who have trated more than 100 women with bigger deep nodules , is a small group of some 25 world wide. This combination of a rare disease and very difficult sugery is a real problem since not so many have the skills. This has created recently another problem : less experienced gynaecologists make a team with surgeons with as a consequence rather systematic bowel resections
The biggest problem is that the difficulty of surgery is difficult to predict . The best model I know is the model we adopted in Oxford : the ex-fellows perfrom 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. We do see a lot of women who have been treated for more than 5 years by medical therapy. Some of them moreover had 3-4 (incomplete interventions) . Some of them even turn out not to have endometriosisn
Gynaecologist who put too much emphasis on subtle lesions (and on the implantation theory) can be problematic, either by overaggressive therapy of this non-patholgy, or by giving years of medical therapy. (with weight gain etc).
Superficial coagulation of typical lesions is nott recommended since the depth of the lesion cannot be judged. Therefore deep lesions-unless excised- will go undiagnosed iand untreated . Best is laser excisio or vaporisation .
Drainage and superficial coagulation of cystic ovarina endometriosis Drainage alone is a waist of time. Superficial coagulation has been fashion, base upon theories of pathophysiology. Today it is well establishedthat recurrence rate is much higher after coagulation (23%) dan after stripping/excision (5%). Therefore I stopped to do coagulations in 1995.
Not recognising a cystic corpus luteum and treat this as endometriosisOnly very experienced echografist will be able to make the difference before surgery ; only experienced surgeons will make the difference during surgery.
Destruction of the ovary. This occurs much too often by lack of experience.
Deep endometriosis is often missed. A menstrual clinical exam is essential. Also during surgery smaller rectovaqginal nodules and cerainly sigmoid nodules are often missed if not very experienced.
Incompletre 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.
A rectum resection for rectovaginal endometriosis. Although understandable for the very large nodules and less experienced surgeon, this is a pity for the smaller ones