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The gold standard for diagnosing endometriosis is by having a laparoscopy (keyhole surgery). Endometriosis is usually classified in stages from minimal to severe, and your doctor is also likely to ask you questions about your periods, pain and other symptoms.

It is not OK or normal to have severe period pain. Also, if the pain is so severe that you are missing school, work and other activities, seek help.

If you think you have endometriosis, see your health care practitioner who can refer you to a specialist gynaecologist. It is important not to delay seeing your doctor, as early diagnosis and treatment can reduce the severity of the disease.

It is also important to know that many women do not get a correct diagnosis for seven to 10 years because the symptoms can vary between women and can change over time. Diagnosis can also be delayed by period pain often being considered as normal by both the community and health professionals.

Topics on this page

How is endometriosis diagnosed?

At present, laparoscopy is the only way to diagnose endometriosis correctly. Laparoscopy is an operation, performed under a general anaesthetic, in which a thin telescopic tube with a light (a laparoscope) is inserted into the abdomen through a cut in the belly button. It allows the gynaecologist to see if there is any endometrial tissue within the pelvis.

There is a move towards more diagnoses being made without surgery, and treatment does not have to depend on surgery to proceed.

There is also increasing research that ultrasound can help make a reliable diagnosis in many, but not all, cases. However, there is a high amount of skill involved in this type of ultrasound, so it is not available everywhere.

Micaela thought painful sex was just part of life as a woman, but an attentive doctor knew there was more to it. She talks about her journey of getting diagnosed and treated for endometriosis.

Stages or grades of endometriosis

The American Society for Reproductive Medicine has created a staging (or grading) system for endometriosis. This system allows surgeons to record the location, extent and depth of endometriosis implants, the severity and presence of adhesions, and also ovarian endometriomas (cysts) seen during surgery.

Endometriosis may be classified as minimal, mild, moderate or severe and also can be classified as a grade or stage, from I to IV.

2019 jh endometriosis uterus diagram

The staging system is useful but has its limitations as the level of endometriosis present does not correlate to the severity of symptoms a woman may experience. A woman with stage I endometriosis could be in just as much pain, or more, as a woman with stage IV endometriosis.

If fertility problems are present, this system is not good at predicting the chance of pregnancy after surgery. There is a different system called the Endometriosis Fertility Index that does better at predicting pregnancy outcomes following surgery. If you are wanting a pregnancy, you can ask your surgeon more about this.

Stages of endometriosis, and what this means:

Stage I – minimal There are small endometrial patches/plaques, inflammation and mild adhesions
Stage II – mild As above, but there are also:

- many endometrial patches and there may be scarring
- adhesions between the uterus and the rectum (called the Pouch of Douglas – see diagram)
Stage III – moderate As above, but also with adhesions involving the ovaries
Stage IV– severe As above, but there are also:

- a large number of implanted endometrial patches
- patches that may form scarred nodules
- adhesions to other organs such as the bladder and bowel
- changes to the shape of pelvic organs

Information your doctor will need

If you think you have endometriosis, keeping a diary of your symptoms is a good way to help your doctor or gynaecologist find out what is wrong. Your doctor may ask questions as part of the diagnosis, so having all the information ready will help. The types of questions you might need to answer are listed below.

Periods How old were you when you had your first period?

Are your periods regular?

How long do your periods last?

How heavy are your periods?
- how many times do you change your tampon/pads?
- what type of tampon or pads do you use: regular, super, night-time, maternity?

Do you pass clots or have a lot of bleeding during your periods?

Do you have a brown discharge before your period starts?

Do you have bleeding or spotting between your periods?

When did your last period start?
Period pain Do you have pain with your periods?

When does the pain start?

For how many hours or days does the pain last?

Where does it hurt?

Is the pain getting worse?

Does the pain stop you doing any of your normal activities?

What helps to reduce your period pain?

When you are in pain, do you also have any sweating, nausea, vomiting, constipation or diarrhoea?

What medications do you take to relieve the pain?
Other pain Do you have pain during or after sex?

Do you have pain when going to the toilet, while either passing urine or opening bowels?

Do you have pain at ovulation (around the middle of your cycle)?

Does the pain stop you doing any of your normal activities?

What makes your pain better or worse?

Do you use pain medication?
- what do you take?
- how well does it work?
Other symptoms Do you have constipation and/or diarrhoea and/or bloating?

Do you have lower back pain or leg pain?

Do you suffer from tiredness, fatigue or migraines?

When do you have the above symptoms?

Have you ever tried to get pregnant? If yes, for how long?

Has your mother, sister or another family member had endometriosis?
Notepad coffee

This web page is designed to be informative and educational. It is not intended to provide specific medical advice or replace advice from your health practitioner. The information above is based on current medical knowledge, evidence and practice as at May 2019.

References

  • 1
    Revised American Society of Reproductive Medicine Classification of endometriosis: 1996. Fertil Steril. 1997 May;67(5): 817–21.
  • 2
    Healey M, Cheng C, Kaur H. To excise or ablate endometriosis? A prospective randomized double-blinded trial after 5-year follow-up. J Minim Invasive Gynecol. 2014 Nov–Dec;21(6):999–1004.
Last updated: 29 November 2019 | Last reviewed: 15 May 2019

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