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What is endometriosis?

Endometrial tissue can form lesions, nodules, and cysts, which are mostly found in the pelvis, the Pouch of Douglas, ovaries, bowel, ligaments, and bladder. Adhesions (fibrous scar tissue which causes internal organs or tissue to stick together) can also form. Cysts on ovaries (endometriomas) may develop in more advanced stages of the disease.   The severity of symptoms experienced is not generally related to the extent of the disease, eg: a person with mild endometriosis can suffer severe symptoms, and vice versa. Not every person born female, with endometriosis will have regular monthly symptoms.  In Aotearoa, it is estimated that this condition affects 120,000 born female. (No one born male has been found with endo here in Aotearoa)

Common symptoms

The most common symptoms of Mate kirikōpū/Endometriosis include but are not limited to:

  • Pelvic pain – usually, but not always, associated with menstrual periods. Pain can be severe and debilitating

  • Bowel-related symptoms such as bloating, painful bowel movements and fluctuating bowel habits, similar to irritable bowel syndrome (IBS)

  • Pain during or after sexual intercourse

  • Abnormal menstrual bleeding (heavy periods or bleeding between periods)

  • Pain with ovulation

  • Sub-fertility or infertility.

  • Premenstrual spotting

  • Cyclical boated abdomen, constipation, or diarrhoea

  • Immune system issues

  • Lower back pain

  • Constant tiredness/fatigue

  • Premenstrual syndrome (PMS)

Impact

Endometriosis may exert a profound negative influence on the lives of individuals with the disorder, adversely affecting the quality of life, participation in daily and social activities, physical and sexual functioning, relationships, educational and work productivity, mental health, and well-being.

What can symptoms be similar to?

  • Irritable Bowel Syndrome

  • Pelvic Inflammatory Disease

  • Polycystic Ovary Syndrome

  • Coeliac Disease

  • Fibromyalgia

  • Ovarian Cancer

Stages
the stage and type of your condition won’t affect your symptoms. For example, a person with stage 1 endometriosis may have worse pain than someone with stage 4.

1

Minimal or stage I endometriosis: typically, small patches, surface lesions or inflammation on or around organs in the pelvis.

2

Mild or stage II endometriosis: more extensive than stage I but limited infiltration of pelvic organs. Limited scarring or adhesions.

3

Moderate or stage III endometriosis: sometimes more widespread and starting to infiltrate pelvic organs, pelvic side walls or other structures. There may also be scarring and adhesions.

4

Severe or stage IV endometriosis: infiltrative disease affecting the pelvic organs and ovaries, often with distortion of the anatomy and extensive adhesions.

Diagnosis: International studies indicate there's often a long delay in getting a diagnosis. On average it takes 8 years from the first doctor's visit with symptoms to diagnosis. For this reason, it is important to play an active role in seeking help as well as accessing treatment. Start this by talking to a doctor about all of your symptoms.  To gain a diagnosis, a doctor will take a detailed medical history, assess signs and symptoms, and a pelvic examination may be carried out. Other tests may be carried out, such as an ultrasound, which is performed to assess the pelvis. While this is a useful tool and can identify cysts associated with endometriosis (endometriomas), it is not a diagnostic tool for Mate kirikōpū /Endometriosis

Mate kirikōpū /Endometriosis can only be definitively diagnosed by laparoscopy. This is a surgical procedure performed under a general anaesthetic by a specialist gynaecologist.

The gynaecologist inserts a laparoscope (a long thin tube with a tiny camera at its tip) through small incisions in the abdomen to examine the abdominal cavity and pelvis on a television monitor, to look for endometriosis, scarring, adhesions and other abnormalities.

Medical treatment focuses on relief of symptoms through the use of pain-relieving medications and hormone treatment.

 

For mild cases of Mate kirikōpū/Endometriosis, pain medications eg: non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, may be sufficient to adequately relieve symptoms, often stronger medication may be required, your doctor should put together a pain management plan for you.

 

There are a number of different types of hormone treatments which can be used. The contraceptive pill can help to balance and regulate periods, 'The pill' often eases distressing symptoms. If you choose to go on 'the pill', it is important to be prescribed one that is best suited to your condition. The effectiveness of hormone treatment varies and may work best in cases of mild endometriosis.

Surgical treatment

Laparoscopic surgery aims to remove endometriosis lesions and adhesions if found and restore normal anatomy. Whenever possible, laparoscopy will be undertaken in preference to laparotomy (open surgical procedure). Medical literature indicates surgical removal (excision) of endometriosis is the gold standard treatment. Therefore it is important that the gynaecologist has the appropriate surgical expertise to fully remove the endometriosis.

Hysterectomy

A hysterectomy is sometimes recommended where symptoms have significantly affected the quality of life and where future fertility has been ruled out. The ovaries may also be removed (oophorectomy). In these cases, it may be necessary to commence menopausal hormone therapy (formerly known as hormone replacement therapy or HRT) after surgery. Hysterectomy is not a cure for endometriosis but many find relief particularly if endometrial tissue was found in the muscles of the uterus (adenomyosis). It is vital that all areas of Mate kirikōpū /Endometriosis are excised at the same time.

For more information on Endometriosis, please see our factsheets or to book Endo in workplace workshop click here

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