Endometriosis occurs when cells similar to those that line the uterus are found in other parts of the body, commonly a woman's pelvic and reproductive organs.[1] What happens when you have endometriosis, and its causes and symptoms, are discussed.
What is endometriosis?
What causes endometriosis?
Can I prevent endometriosis?
Related resources
There may be different forms of endometriosis
How do you know if you have endometriosis?
Symptoms you may experience
Symptoms during menopause
When to get help
Endometriosis, pronounced end-o-me-tree-oh-sis (or just endo), is a progressive, chronic condition where cells similar to those that line the uterus (the endometrium) are found in other parts of the body. It most commonly occurs in the pelvis and can affect a woman's reproductive organs.
Studies suggest that endometriosis affects 1 in 10 women of reproductive age, with an estimated 176 million women worldwide having the condition.
The endometrial cells:
Endometrial cells found outside the uterus grow to form lesions or patches that bleed and leak fluid in response to your hormones at the time of the period. This leads to inflammation and scarring. These patches found outside the uterus cannot pass out of your body and remain in your pelvic cavity, on organs and other surfaces. On your ovaries, cysts called endometriomas can develop over time. These are sometimes called 'chocolate cysts' because of the darkish material they contain. On other surfaces the patches can form nodules.
We don't really know what causes endometriosis, and possible associations or factors can be different from woman to woman. Factors that have a role in causing endometriosis include:
Other possible factors that may have a role in causing endometriosis are:
In this video, Jean Hailes gynaecologist Dr Elizabeth Farrell gives a brief overview of the symptoms, management and treatment options for endometriosis.
Endometriosis can't be prevented but is less likely to develop or progress if a woman reduces the number of menstrual cycles she experiences during her reproductive years. Factors that contribute to fewer menstrual cycles include:
The symptoms of endometriosis vary from woman to woman. Some women have many symptoms and severe pain, whereas others have no symptoms. The severity of the symptoms may not reflect the severity of the condition. The types of symptoms and their severity are likely to be related to the location of the endometrial tissue rather than the amount of endometrial cells growing.
Due to the varied symptoms, endometriosis can take a long time to diagnose (the average time to diagnosis is seven years). About a third of women with endometriosis discover they have it because they have not been able to become pregnant, or because endometriosis is found during an operation for another reason.
About three out of four women with endometriosis have pelvic pain and/or painful periods.
Symptoms can be extremely variable and may present with mild pain with periods or may be severe right from the outset of menstruation (menarche). For some women, there can be a slow and steady progression of symptoms (common); for others, symptoms may progress rapidly and affect multiple areas of the body and include non-gynaecological symptoms (less common).
Hithaishi had to convince doctors she wasn't drug seeking or had psychological issues before being diagnosed with endo. Watch the video and find out how she did it.
Pain is a key symptom of this condition. The pain is not related to how severe the disease is, but rather to the location of endometrial tissue.
The table below outlines the symptoms you might experience with endometriosis. Each woman with endometriosis will experience a different range of symptoms.
| Pain | Pain immediately before and during a period (also called dysmenorrhoea). Pain during or after sex (also called dyspareunia). Abdominal, lower back and/or pelvic pain. Pain on going to the toilet, passing urine, opening bowels. Ovulation pain, including pain in the thigh or leg (this can also happen in women without endometriosis). Pain that gets worse over time. Severe pain that means you can't participate in work, school or sporting activities. |
| Bleeding | Heavy menstrual bleeding, with or without clots. Irregular menstrual bleeding, with or without a regular cycle. Bleeding longer than normal. Bleeding before a period is due. |
| Bladder and bowel problems | Bleeding from the bladder or bowel. Change in pattern of bowel habit, such as constipation, diarrhoea. The need to urinate more frequently, or some other change from the normal habit. |
| Bloating | Increased abdominal bloating, with or without pain at the time of the period. |
| Tiredness | Tiredness or lack of energy, especially around the time of the period. |
| Mood changes | Anxiety and depression due to ongoing pain. |
| Reduced quality of life | Taking days off work, study or school because of an inability to function normally. |
| Vaginal discomfort | Pelvic floor muscle spasm or tightening occuring because of fear of pain previously experienced with intercourse or tampon use. |
Usually, endometriosis does go away after menopause. Uncommonly, it can return with the use of menopausal hormone therapy, or MHT (formerly called hormone replacement therapy, or HRT), especially if there is no progestogen component. Even more rarely, it can return for no reason without any hormonal treatment.
Get help when period pain is stopping normal daily activities. For example when:
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.