Endometriosis is one of the most common gynaecological diseases needing treatment. It is defined as the growth of endometrial-like tissue (the womb lining) outside the uterus (womb). Endometriosis is mainly a disease of the reproductive years and, although its exact cause is unknown, it is hormone mediated and is associated with menstruation.
Endometriosis is typically associated with symptoms such as pelvic pain, painful periods and subfertility. Endometriosis is also associated with a lower quality of life. Women with endometriosis report pain, which can be frequent, chronic and/or severe, as well as tiredness, more sick days, and a significant physical, sexual, psychological and social impact. Endometriosis is an important cause of subfertility and this can also have a significant effect on quality of life.
Women may also have endometriosis without symptoms, so it is difficult to know how common the disease is in the population. It is also unclear whether endometriosis is always progressive or can remain stable or improve with time.
Delayed diagnosis is a significant problem for women with endometriosis. Patient self-help groups emphasise that healthcare professionals often do not recognise the importance of symptoms or consider endometriosis as a possibility. In addition, women can delay seeking help because of a perception that pelvic pain is normal. Delays of 4 to 10 years can occur between first reporting symptoms and confirming the diagnosis. Many women report that the delay in diagnosis leads to increased personal suffering, prolonged ill health and a disease state that is more difficult to treat.
Diagnosis can only be made definitively by laparoscopic visualisation of the pelvis, but other, less invasive methods may be useful in assisting diagnosis, including ultrasound. Management options for endometriosis include pharmacological, non-pharmacological and surgical treatments. Endometriosis is an oestrogen-dependent condition. Most drug treatments for endometriosis work by suppressing ovarian function, and are contraceptive. Surgical treatment aims to remove or destroy endometriotic lesions. The choice of treatment depends on the woman's preferences and priorities in terms of pain management and/or fertility.
Endometriosis can be a chronic condition affecting women throughout their reproductive lives (and sometimes beyond). Women's priorities and preferences may change over time, and management strategies should change to reflect this.
Women with endometriosis typically present to community services (including GPs, practice nurses, school nurses and sexual health services) with pain, and may then be referred to gynaecology services for diagnosis and management. Some women may present to fertility services. Complex surgical treatment is carried out in specialist endometriosis services (endometriosis centres), which incorporate a multidisciplinary team.
This guideline makes recommendations for the diagnosis and management of endometriosis in community services, gynaecology services and specialist endometriosis services (endometriosis centres).
The guideline also covers the care of women with confirmed or suspected endometriosis, including recurrent endometriosis. It includes women who do not have symptoms but have endometriosis discovered incidentally. Special consideration was given to young women (aged 17 and under). The guideline does not cover the investigation of fertility problems related to endometriosis, care of women with endometriosis occurring outside the pelvis, nor postmenopausal women.
You can also see this guideline in the NICE pathway on endometriosis.