How is endometriosis diagnosed?

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

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

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

Some or all of the visible tissue is removed so it can be examined under a microscope to confirm a diagnosis of endometriosis.

Stages or grades of endometriosis

The American Fertility Society 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 seen during surgery. Endometriosis may be classified as mild or minimal, moderate or severe and can also be listed as a grade or stage I through to IV.

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.

Stages of endometriosis	What this means
Stage I – mild or minimal	There are small endometrial patches/plaques, inflammation and mild adhesions
Stage II – mild	As above but also there are: many endometrial patches and there may be scarring adhesions between the uterus and the rectum (called the Pouch of Douglas – see diagram below)
Stage III – moderate	As above, but also with adhesions involving the ovaries
Stage IV– severe	As above, but also there are: 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 of the information ready will help.

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?

Can endometriosis affect the bowel?

Endometriosis may spread to the outside/inside of the bowel causing pain and bleeding when you have sex or open your bowels.

Can endometriosis lead to cancer?

Very rarely, cancer has been diagnosed in endometriosis tissue; it mostly occurs in the ovary and a small number of other organs.

Long-term health issues

A recent study suggested that women who suffer from endometriosis have a higher long-term risk of heart disease. This may be due to hysterectomy and removal of the ovary for chronic pain and endometriosis recurrence. It is important to have regular health checks with your GP.

What happens at menopause if you have endometriosis?

Menopause is the same as for women who do not have endometriosis. However, the menopause experience is individual and ranges from no symptoms to severe symptoms.

If you had a surgical menopause – your ovaries have been removed with or without your uterus – then menopause symptoms will be experienced unless you start hormone replacement therapy (HRT) soon after the surgery.

Usually, endometriosis does go away after menopause. However, it may come back when you are on HRT, but this is rare. Even more rarely, it can return spontaneously.

What to do if you are concerned

If you are worried about any aspect of endometriosis or are worried that endometriosis may affect a part of your body or your future health, talk to your doctor.

References

Mu F, Rich-Edwards J et al. Endometriosis and Risk of Coronary Heart Disease. Circ Cardiovascular Qual Outcome. 2016; 9(3):257-64
Revised American Society of Reproductive Medicine Classification of endometriosis: 1996 Fertil Steril. 1997;67: 817-21

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