Recommendations for research

The guideline committee has made the following recommendations for research.

1 Pain management programmes

Are pain management programmes a clinically and cost-effective intervention for women with endometriosis?

Why this is important

Pain is one of the most debilitating symptoms of endometriosis. Endometriosis-related pain can be acute or chronic, and can adversely affect the woman's quality of life, ability to work, and can affect partners and their families.

Pain management programmes have been found to be effective in managing chronic pelvic pain, and can improve quality of life. However, it is unclear how much of this small evidence base can be generalised to women with endometriosis for which evidence is lacking. Furthermore, pain management programmes have not been compared with other treatments available for endometriosis. Pain management programmes promote self-management and are often provided in the community.

If found to be effective for endometriosis, pain management programmes would provide an additional or alternative treatment option for women experiencing endometriosis-related pain. Groups of particular interest are women for whom hormonal and surgical options have been exhausted, women who would prefer an alternative to a pharmacological or surgical approach, and women who may be prioritising trying to conceive.

2 Laparoscopic treatment of peritoneal endometriosis (excision or ablation)

Is laparoscopic treatment (excision or ablation) of peritoneal disease in isolation effective for managing endometriosis-related pain?

Why this is important

Isolated peritoneal endometriosis can be an incidental finding in women who may or may not experience pain or other symptoms.

Research is needed to determine whether laparoscopic treatment of isolated peritoneal endometriosis in women with endometriosis-related pain results in a clinical and cost-effective improvement in symptoms.

The current literature does not provide a clear answer because the stage of endometriosis is often not sufficiently clearly defined in research studies, and the treatment modalities used are multiple and varied. The resultant amalgamation of various stages of endometriosis and variable treatment modalities leads to loss of certainty of outcome in this specific group of women.

Establishing whether treating isolated peritoneal endometriosis is cost effective is important, because this forms a large part of the workload in general gynaecology, and uses considerable resources.

3 Lifestyle interventions (diet and exercise)

Are specialist lifestyle interventions (diet and exercise) effective, compared with no specialist lifestyle interventions, for women with endometriosis?

Why this is important

Endometriosis is a long-term condition that can cause acute and chronic pain, and fatigue. It has a significant and sometimes severe impact on the woman's quality of life and activities of daily living, including relationships and sexuality, ability to work, fertility, fitness and mental health.

Supporting self-management is critical to improving quality of life for women living with endometriosis. In order to successfully self-manage the condition, women need evidence-based, easily accessible information about the condition and ways of managing it that support surgical and medical treatment. However, no high-quality research was identified on the effectiveness of lifestyle interventions such as diet or exercise and other non-medical treatments in reducing pain, fatigue and other symptoms.

Studies should aim to provide evidence-based options to support self-management of endometriosis. This would improve the quality of life of women with endometriosis, enabling them to manage pain and fatigue, and reducing the negative impact on their career, relationships, sex lives, fertility, and physical and emotional wellbeing.

4 Information and support

What information and support interventions are effective to help women with endometriosis deal with their symptoms and improve their quality of lives?

Why this is important

This guideline has identified that women with endometriosis and their partners feel that information and support is not always provided in the way that best meet their needs. However, the direct effectiveness of different types or formats of information and support interventions on measurable outcomes such as health-related quality of life and level of function (for example, activities of daily living) have not been tested. Good practice in this area in non-specialist and specialist settings can improve satisfaction with the care provided. It may also improve quality of life and positively affect relationships between healthcare professionals and the woman with endometriosis, as well as the woman's personal family relationships.

ISBN: 978-1-4731-2661-9

  • National Institute for Health and Care Excellence (NICE)