Endometriosis: diagnosis and management—information for the public

  • The following information is taken from the Information for the public section of NICE Guideline 73 Endometriosis: diagnosis and management and is intended to be used in consultation with patients. The information can also be printed out for patients to take away and refer to

Endometriosis

  • About 1 in 10 women have endometriosis, which is when tissue usually only found inside the womb starts to grow in other parts of the body. This can cause severe symptoms, including painful periods and pelvic pain, and could mean that women have difficulties getting pregnant. Endometriosis can have a huge impact on women’s quality of life, work and relationships. NICE aims for this guideline to make a difference to women with endometriosis by:
    • helping your doctor spot when it might be endometriosis so that you are treated and diagnosed sooner
    • making sure you see healthcare professionals who have specialist knowledge of endometriosis
    • making sure you get information about all your treatment options, and support to decide what treatment would suit you best.

Helping you decide about treatment

  • Most women with endometriosis are asked to think about hormonal contraceptives as the first kind of hormone treatment to try. These control the menstrual cycle so, although they are commonly used for contraception, they are also used to treat endometriosis. NICE has produced this patient decision aid to help women decide if they want that kind of treatment for endometriosis, and which treatment to choose

Making decisions together

  • Decisions about treatment and care are best when they are made together. Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns.
  • To help you make decisions, think about:
    • what is most important to you at this stage in your life—is it more important to reduce your symptoms or to be able to get pregnant?
    • whether you want treatment, and what may happen if you choose not to have it
    • how the treatment, including any side effects, may affect your day‑to‑day life
  • If you can’t understand the information you are given, tell your healthcare professional
  • You can read more about making decisions about your care on the NICE website

Where can I find out more?

NHS Choices has more information about endometriosis

The organisations below can give you more advice and support:

You can also go to NHS Choices or the Human Fertilisation and Embryology Authority (HFEA) for more information about fertility problems. You can connect with others who have similar problems on the Endometriosis UK Health unlocked forum

© NICE 2018. Endometriosis: diagnosis and management—information for the public. Available from: www.nice.org.uk/guidance/NG73/IFP. All rights reserved. Subject to Notice of rights.

NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.

First included: May 2018.