Information for the public

About 1 in 10 women have endometriosis, which is when tissue similar to that 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. We want 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. We’ve 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.

Read more about making decisions about your care.

In the news

Read NICE news about how this guideline will help.

Suspect endometriosis in women with chronic pelvic pain, says NICE

Raising awareness of endometriosis – Rachel Brown tells us how the new NICE guideline should lead to a better quality of life for women who suffer with endometriosis

Where can I find out more?

The NHS website has more information about endometriosis.

The organisations below can give you more advice and support.

You can also go to the NHS website 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 is not responsible for the content of these websites.

We wrote this guideline with people who have been affected by endometriosis and staff who treat and support them. All the decisions are based on the best research available.

ISBN: 978-1-4731-2662-6

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