Diagnosing endometriosis
The only definitive way to diagnose endometriosis is through laparoscopic (key-hole) surgery, where endometriosis can be seen and excised (removed) for a biopsy.
GP's may be able to offer a clinical (tentative) diagnosis based on symptoms.
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.
It's important to know that with endometriosis the amount of pain does not match the extent of endometriosis.
The pathway to diagnosis
On average it takes 8.7 years for endometriosis to be diagnosed in Aotearoa, New Zealand and this can be due to uncertainty of the pathway to diagnosis.
Identify and track your symptoms
Book an appointment with your GP, to talk about the symptoms you have identified, and to get a referral to a gynaecologist that specialises in endometriosis.
Get a referral from your GP to see a gynaecologist that specialises in endometriosis. You can also self-refer to a gynaecologist in private practice (health insurance may cover the cost of this appointment, or you can pay yourself).
Your GP and/or gynaecologist may request a range of tests and imaging to support their diagnosis of endometriosis, or other conditions that may be causing your symptoms
If you want a definitive diagnosis of endometriosis, you can talk with your gynaecologist about having a laparoscopy for diagnosis and excision (removal) if any endometriosis is found.
1. Identify and track your symptoms
Symptoms of endometriosis are wide-ranging and may be similar to several other conditions and endometriosis has been likened to a ‘jigsaw’ of symptoms. To help you identify your symptoms, download and complete our symptoms checklist and jigsaw of symptoms.
It can be a good idea to track your symptoms for 2-3 months, this will help talk to a medical professional about what you have been experiencing. A symptom diary can be useful to track pain, and other symptoms, their severity, and the effect on your life - as well as medicines you are taking, any lifestyle changes you have made (such as nutrition, exercise, pain/stress management) and complementary therapies you have tried.
A symptom diary can reveal trends and the effectiveness of different strategies which will give you and your health professionals valuable information in reaching a diagnosis. It will also add to your feeling of control and your overall sense of well-being.
You can use an app, make notes on your phone, or track things on paper.
3. Appointment with a gynaecologist
Going to see a gynaecologist can feel overwhelming, so being well-prepared and having a support person with you can help relieve the pressure and reduce any feelings of anxiety.
A gynaecologist will take a full history of your symptoms and the impacts these are having on your life, as well as a family history to help determine a long-term treatment and management plan. Their recommendations will depend on a range of factors, including:
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age
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symptoms
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clinical history
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the extent of the disease
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co-morbidities (other co-existing conditions)
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cultural considerations
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individual preference and priorities which may include pain/symptom management and/or fertility, this may change over the lifetime experience of endometriosis.
Your treatment and management plan may include pain relief medication, hormonal treatment and/or laparoscopic surgery to definitively diagnose endometriosis and remove any endometriosis they find during surgery.
Similar to going to see your GP, write down all of your symptoms, impacts and questions, as well as the medications and supplements you are currently taking. Just like at your GP appointment don’t minimise your symptoms or how they impact your life; use straightforward language and provide specific descriptions.
4. The role of tests and imaging
There are tests your GP or gynaecologist can order to help with their diagnosis. Most tests will not definitively rule in or rule out endometriosis but can find other causes of symptoms. If, after tests, no other explanation is found, endometriosis is left as the most probable cause.
Pelvic/Abdominal Exam
Endometriosis nodules can sometimes be felt during a pelvic/vaginal examination or may even be seen by smear-takers.
During a pelvic/abdominal exam, a health professional may also be able to feel an 'adnexal mass' which may indicate a cyst or the presence of adhesions as organs do not move as
they should.
Ultrasound
An ultrasound can be used to eliminate other possible causes of symptoms, such as fibroids and polyps. In skilled hands with modern ultrasound equipment, Deeply Infiltrating Endometriosis might be detected.
Ultrasounds can also show:
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cysts - there should be further tests to distinguish endometrioma from other types of cysts
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adhesions - formed from inflammation caused by endometriosis or infection
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an enlarged or 'bulky' uterus, indicating adenomyosis
MRI Scan
An MRI scan may be used in planning surgery by establishing the extent of endometriosis or to assess an ovarian cyst. Generally, complex surgery will be anticipated, or symptoms which may suggest other conditions which warrant an MRI.
CA-125 Blood Test
This is a blood test typically used to detect ovarian cancer but can be elevated in a variety of gynaecological conditions including benign ovarian cysts and endometriosis.
5. Laparoscopic surgery for diagnosis
The gold standard for diagnosing endometriosis is a surgical procedure called a laparoscopy that is performed by a gynaecologist surgeon that specialises in endometriosis. This is a highly complex surgery, needing a high level of expertise because surgeons' skill-set will be different and our questions for surgeons, and answers to expect may help you to make an informed decision.
As well as a definitive diagnosis, a laparoscopy also provides an opportunity to treat in the same procedure; the surgeon can remove endometriosis, divide adhesions, check the patency of the fallopian tubes, and may be able to repair damage caused by endometriosis.
During surgery, tissue suspected to be endometriosis is removed (excised) and sent to a pathologist for study under a microscope (histology) for a definitive endometriosis diagnosis.
Sometime after the surgery, the pathology results are sent to your gynaecologist, and from this they will determine the stage/grade or category of endometriosis to discuss with you along with an ongoing treatment and management plan.
The commonly used American Society for Reproductive Medicine (ASRM) Staging System divides endometriosis into four 'stages' or 'grades' according to the number of lesions, depth of infiltration, presence of ovarian cysts, and extent of adhesions. The stages can be useful to determine the complexity of the surgery, with stages III and IV requiring highly-skilled surgeons.
Discover the ASRM stages/grades +
The ASRM system scores often do not match the level of pain a person can be in and the Endometriosis Foundation of America proposes a different classification based on the type of endometriosis.
Find out more about the Endometriosis Foundation of America categories +
Clinical (presumptive) diagnosis
A clinical (presumptive) diagnosis is made by your GP based on your symptoms, medical history, and family history.
This diagnosis is presumptive because endometriosis can only be definitively diagnosed by it being removed (excised) and studied under a microscope. It is your choice whether to have surgery or not.
Your GP should provide you with a pain management plan and/or hormonal treatment that may help with symptom management and this may be helpful whilst waiting for surgery.
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