It may take some time to get a diagnosis as the symptoms of endometriosis can be wide-ranging and are very similar to other common conditions.
Please know that being undiagnosed does not make your pain any less valid.
A definitive diagnosis of endometriosis can only be made by laparoscopic visualisation and biopsy of any tissue suspected to be endometriosis. A laparoscopy should be performed by a gynaecologist with surgical skills in excising endometriosis lesions.
If you suspect you have endometriosis keep a symptom diary and discuss your symptoms with a GP or gynaecologist that specialises in endometriosis.
Your GP can refer you for an appointment with a gynaecologist specialising in endometriosis or, in New Zealand, you can refer yourself to a gynaecologist in private practice. If you have medical / health insurance your policy may cover the fees associated with the gynaecologist appointment and treatment options.
A laparoscopy (keyhole surgery) is an operation that is performed under general anaesthetic. It may require an overnight stay in the hospital, some people stay for more than one night depending on the extent of the surgery and their recovery.
During laparoscopic surgery, a laparoscope (thin camera) is inserted into the pelvis via a small cut near the navel. Other instruments may be inserted into the pelvic / abdominal area via small cuts. The laparoscopy is used to see the pelvic organs and to look for any signs of endometriosis deposits and cysts.
During the surgery tissue that is suspected to be endometriosis is excised (removed) and sent to a pathologist for histology (microscopic study). The histology of the tissue removed is needed for an endometriosis diagnosis.
Following histology, the results and diagnosis are sent to your gynaecologist, who will then discuss the results with you and a treatment and management plan following surgery.
A laparoscopy is also a treatment option as during the operation the surgeon can remove patches, cysts and adhesions and also repair any damage caused by endometriosis.
Your GP may suggest you have endometriosis based on your symptoms, medical history and family history.
The doctor may suggest trying medical treatment without a definitive diagnosis (laparoscopic visualisation and biopsy of tissue removed) to reduce your symptoms. Options for medical treatment are analgesics, hormonal contraceptives or progestogens. If these treatments help relieve your symptoms you may decide not to undergo laparoscopy.
Pelvic / Vaginal Examination, Ultrasound, MRI, and CA-125
In our experience, some people may have been 'diagnosed' with endometriosis following a pelvic / vagainal examination, ultrasound, MRI scan or blood test.
Pelvic / Vaginal Examination
Endometriosis nodules can sometimes be felt during a pelvic / vaginal examination or be seen by smear-takers.
A normal pelvic / vaginal examination does not exclude endometriosis.
The Role of Ultrasound
An ultrasound can be used to eliminate other possible causes of symptoms, such as fibroids and polyps.
Ultrasounds can also show:
cysts and there should be further tests to distinguish endometrioma from other types of cysts
adhesions formed from inflammation caused by endometriosis
an enlarged or 'bulky' uterus, indicating adenomyosis
A clear ultrasound does not exclude endometriosis and actually indicates that endometriosis is LIKELY to be the underlying cause of the symptoms because nothing else was found to explain symptoms.
An MRI scan may be used in planning surgery by establishing the extend of endometriosis or to assess an ovarian cyst. It is not common to have an MRI to diagnose endometriosis alone, and usually happens if there is complex surgery anticipated or other symptoms / conditions to diagnose.
A blood test measuring a protein, CA 125, may also assist in diagnosis as the protein can be raised in endometriosis. However, a raised level is not specific to endometriosis but indicates irritation or inflammation inside the body and can also be raised with appendicitis, pelvic infection and ovarian cysts.
Stages and Classifications of Endometriosis
The most used and best-known system for classifying the stages of endometriosis was developed by the American Society for Reproductive Medicine (ASRM) and divides the disease into four stages or grades according to the number of lesions and depth of infiltration. The classification also uses a point system to try to quantify endometriotic lesions.
Using the ASRM classification system endometriosis is classed as mild, moderate or severe. It may also be recorded in medical notes as Stage I, Stage II, Stage III or Stage IV.
The points system has its limitations and doesn't always accurately match the symptoms. The Endometriosis Foundation of America (Endofound.org) has therefore proposed a different classification using more descriptive categories and uses the anatomical location and level of infiltration.
ASRM Classification System
Mild or Stage I
Appears as small patches or surface lesions scattered around the pelvic cavity, with no scarring.
Moderate or Stage II - III
Appears as large patches or patches that are more widely spread. They may be attached to the ovaries, fallopian tubes, uterosacral ligaments and the Pouch of Douglas. Cysts may be present and are often associated with significant scarring.
Severe of Stage IV
At Stage IV endometriosis affects most of the organs in the pelvic cavity, often with severe scarring. The uterus, ovaries, fallopian tubes, bowel, bladder, uterosacral ligaments and the Pouch of Douglas are often held down by adhesions.
Endofound Endometriosis Classification
Category I - Peritoneal Endometriosis
The most minimal form of endometriosis in which the peritoneum, the membrane that lines the abdomen, is infiltrated with endometrisois tissue.
Category II - Ovarian Endometriomas (Chcolate Cysts)
Endometriosis forming a cyst within the ovary can cause many problems with fertility, torsion (twisting), and risks of rapture which can cause severe pain, internal bleeding and spreading endometriosis within the pelvic area.
Category III - Deep Infiltrating Endometriosis I (DIE I)
The first form of deep infiltrating endometriosis involves organs within the pelvic area. This can include the ovaries, rectum, uterus, and can significantly distort the anatomy of the pelvic organs.
Category IV - Deep Infiltrating Endometriosis II (DIE II)
The other more extreme form of DIE involves organs both within and outside the pelvic area. This can include the bowels, appendix, diaphragm, heart, lungs and other organs.