Understand endometriosis.

Chapter 1

What is endometriosis?

Endometriosis is a condition where cells similar to those in the lining of the womb (uterus) grow in other parts of the body. The World Health Organization describes it as a chronic disease that can cause inflammation and scar tissue.

It is most often found around the womb: on the ovaries, the fallopian tubes and the lining of the pelvis. Sometimes it affects the bladder or bowel, and occasionally places outside the pelvis, such as the chest.

It can affect anyone who has, or has had, a womb, from their first period through to menopause. The WHO notes that this includes transgender men and non-binary people who menstruate. Around 1 in 10 women and girls of reproductive age worldwide have endometriosis.

The cause is not known, and there is currently no cure. Treatments can help manage symptoms, and NICE recognises that endometriosis can be a long-term condition with physical, sexual, psychological and social impact.

Chapter 2

Recognising possible symptoms

Symptoms vary from person to person. The NHS describes these symptoms during periods or at any time, and adds that some people also have difficulty getting pregnant, or low mood or anxiety:

• Severe period pain that stops you doing your normal activities
• Heavy periods, such as needing to change pads or tampons every 1 to 2 hours, or bleeding through to your clothes
• Pain in your lower tummy (pelvic pain) or back, at any time
• Pain when pooing or peeing
• Pain during or after sex
• Extreme tiredness (fatigue)
• Difficulty getting pregnant, and low mood or anxiety

Symptoms are not limited to periods. Pelvic pain can happen at any time of the month, and the WHO describes chronic pelvic pain that continues after a period has ended.

What prompts clinicians to consider it

NICE guidance asks healthcare professionals to suspect endometriosis, including in young people aged 17 and under, when someone has one or more of: chronic pelvic pain; period pain that affects daily activities and quality of life; deep pain during or after sex; period-related or cyclical bowel symptoms, especially painful bowel movements; period-related or cyclical urinary symptoms, especially blood in the urine or pain passing urine; or difficulty getting pregnant alongside any of these.

Chapter 3

Why experiences differ

Two people with endometriosis can have very different experiences. The WHO notes that symptoms vary widely and that some people have no symptoms at all.

Pain is personal. NICE asks healthcare professionals to recognise that everyone’s experience of pain is unique and may be expressed in different ways, verbally and non-verbally, and that this can vary with cultural background, socioeconomic status and neurodivergence.

NICE also recommends that treatment is offered according to a person’s symptoms, preferences and priorities rather than the “stage” of endometriosis.

Other conditions can cause similar symptoms. The NHS names adenomyosis, fibroids, pelvic inflammatory disease and irritable bowel syndrome. This is one reason an assessment by a healthcare professional matters.

Chapter 4

Understanding medical assessment

Diagnosing endometriosis can take a long time and may need several tests. The WHO reports an average of 4 to 12 years from first symptoms to diagnosis worldwide.

At the GP

According to the NHS, a GP may ask about your symptoms and whether close relatives have had endometriosis, offer a physical examination (which can include an internal vaginal examination, if you agree) and arrange blood tests. They may offer medicines and may refer you to a gynaecologist.

Tests that may be offered

• Ultrasound scan — on the tummy or inside the vagina. NICE recommends offering a transvaginal ultrasound to people with suspected endometriosis, even if an examination is normal.
• MRI scan — used in some cases, for example to look for deep endometriosis.
• Laparoscopy — a small camera passed through a cut in the tummy. It can confirm endometriosis, and affected areas may be treated during the same procedure.

NICE advises that a normal examination and ultrasound do not rule endometriosis out, and that a referral may still be needed. It also advises against using the CA125 blood test to diagnose endometriosis.

Chapter 5

Preparing for a healthcare conversation

NICE advises that keeping a pain and symptom diary can aid discussions, and the NHS encourages giving your GP as much information about your symptoms as you can.

Things you might note down

• When symptoms happen, how long they last and how strong they feel
• How they relate to your periods, if you have them
• How they affect daily life, work, study, sleep and relationships
• Medicines or other things you have tried, and whether they helped
• Whether close relatives have had endometriosis
• The questions you want to ask

Phrases some people find helpful

• “These symptoms are affecting my work and daily life.”
• “I’ve been keeping a record. Can I show you what I’ve noticed?”
• “What are the options for investigating this further?”
• “Would a referral to a gynaecology service be appropriate?”

NICE describes referring people to gynaecology services when, for example, initial treatment isn’t effective or tolerated, symptoms have a detrimental impact on daily living, or symptoms persist or recur.

Chapter 6

How EndoAI helps organise information

EndoAI can help you keep your observations together for your next healthcare conversation.

• Daily check-in and body map — record symptoms, pain and where you feel it, as it happens.
• Insights — review recorded trends and descriptive patterns across your own records.
• Doctor Prep — organise recent records into a concise summary with questions to bring.
• Medical Vault — keep letters and reports you choose to upload in one place.

Bring your story with you.

EndoAI does not diagnose or replace your healthcare professional. It helps you describe your experience clearly.

Try the sample app journey first →

Next: explore pelvic anatomy →See every source →