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32 pages and sections

• Understand endometriosis

  What it is, and which symptoms WHO and NICE name.

• Diagnosis and care

  History, ultrasound, MRI, and why a normal scan does not rule it out. Then the care finder.

• Treatment

  Pain medicines, hormones, surgery, and fertility care, as guidelines describe them.

• Living with endometriosis

  Work, school, fatigue, and where to read further.

• Care in Denmark

  The sourced care path, centres, and medicines for Denmark.

• Research and evidence

  The weekly literature digest, the research explainer, and the knowledge base.

• Data

  Recruiting trials, Denmark trials, and recent papers from the weekly extract.

• Symptoms

  Symptoms vary widely. Some people are very unwell. Some have endometriosis and few symptoms. This page lists what the World Health Organization and NICE actually name — it does not diagnose you.

• What WHO lists as symptoms

  WHO describes endometriosis as a chronic disease. The symptoms it names are severe pain during menstruation, heavy menstrual bleeding, chronic pelvic pain that does not go away when the period ends, infertility, and abdominal bloating and nausea.

• When NICE says to suspect it

  NICE guideline NG73 is written for the NHS in England. It says to suspect endometriosis in women and people, including those aged 17 and under, who have one or more of: chronic pelvic pain; period-related pain that affects daily activities and quality of life; deep pain during or after sex; period-related or cyclical gastrointestinal symptoms, especially painful bowel movements; period-related or cyclical urinary symptoms, especially blood in the urine or pain passing urine; or infertility together with one or more of those.

• When symptoms stop ordinary life

  WHO says some people have pain or other symptoms that stop them going to work or school, with lost income for them and their families. It also says these impacts are made worse by stigma and by the belief that period pain is something to ignore. That is a reason to ask for care.

• It starts with the history

  WHO says a careful menstrual health history — pain, how heavy the bleeding is, and associated symptoms — can help with diagnosis. WHO also says the average time to diagnosis is between 4 and 12 years, and that long delays are common.

• Ultrasound and MRI

  WHO says endometriosis is diagnosed using imaging such as ultrasound, and that a clinical diagnosis may be made from symptoms and imaging tests such as ultrasound or MRI. Surgery is not necessarily required before treatment starts.

• A blood test does not diagnose it

  NICE recommendation 1.5.8 says: do not use serum CA125 to diagnose endometriosis. A raised or normal CA125 does not answer the question.

• Laparoscopy

  WHO says laparoscopic surgery, where tissue can be seen directly or sampled, can be recommended, and that this procedure is inaccessible to many people. It remains a way to confirm disease. It is not a requirement in every case before treatment, which is why the history and imaging matter.

• Newer tests are still emerging

  WHO says new tests aimed at finding endometriosis earlier include symptom checklists, blood tests, and self-tests using saliva or menstrual blood. It lists them as emerging. It does not describe a saliva or blood test as the established way to diagnose the disease. Laparoscopy and clinical assessment remain the methods WHO describes for diagnosis.

• No cure — symptom control

  WHO says there is currently no cure, and no treatment that definitively cures the disease. Treatment aims to control symptoms and limit long-term impacts. The choice depends on severity, individual preferences, side effects, long-term safety, cost, availability, and whether pregnancy is desired.

• Medicines for pain

  WHO says NSAIDs such as ibuprofen and naproxen, and other painkillers, are often used for pain.

• Hormonal treatment

  WHO says hormonal medicines may reduce how severe pain is, or how often it happens, for some people. The methods it names are combined hormonal contraceptives (pill, patch, ring), progestins (hormonal IUD, DMPA), and GnRH analogues. It also mentions aromatase inhibitors as other hormonal modulators. Some of these are not suitable for people who want to become pregnant.

• Surgery, including hysterectomy

  WHO says surgery can remove endometriosis lesions, adhesions, and scar tissue. How much it reduces pain, and how much it changes pregnancy rates, often depends on the extent of disease. Lesions may come back after they have been removed. Pelvic floor muscle problems can also contribute to chronic pelvic pain.

• Fertility care

  WHO says fertility treatments — ovulation induction, intrauterine insemination, or IVF — may be recommended for people who are having difficulty conceiving because of endometriosis. Among people with infertility, WHO says as many as 25–50% have endometriosis. That figure is about people already being seen for infertility. It is not the chance that any one person with endometriosis cannot conceive.

• Physiotherapy, psychology, and support

  WHO says that alongside medical care, local patient groups can help, and that multidisciplinary pain care — including physiotherapy and cognitive behavioural therapy — can reduce endometriosis-associated pain for some people.

• What it can change

  WHO says severe pain, heavy bleeding, fatigue, depression, anxiety, infertility, poor sexual health, and social isolation can sharply reduce quality of life. Heavy bleeding can contribute to iron deficiency and fatigue. Painful sex can lead people to stop or avoid intercourse.

• Pain is still treated as normal

  WHO says that in many countries the public, families, and most health workers do not recognise that this chronic pelvic pain is not normal. Normalising the pain, and the stigma around periods, harms mental health.

• A symptom diary

  NICE says to tell people that keeping a pain and symptom diary can help discussions. Dates, what the pain stopped you doing, bleeding, bowel and bladder symptoms, and what you tried are the useful columns. Bring it to the appointment. It does not replace an examination.

• Where to go next

  Talk to a clinician about your own symptoms. OpenEndo's access finder lists sourced centres, medicines, and patient organisations by country, with the date each record was checked. Patient groups are support. They are not an emergency service and not a specialist clinic.

• How to read this page

  The care steps, centre names, and medicine notes are rendered from docs/data/access.json in the OpenEndo repository. Each record carries its own sources and a verified date. If that file cannot be loaded, this page says so. It does not fall back to an older handwritten list.

• Danish sources to read alongside this

  Lægehåndbogen on sundhed.dk is the Danish clinical overview used by clinicians. Endometriose Fællesskabet is the patient organisation: counselling, community, and help with rights at work and in the system. The two specialised centres named in the access file are Rigshospitalet in the east and Aarhus University Hospital, Skejby, in the west. The live list below is the one to use if those names or roles change.

• Care finder

  Pick your country to see which endometriosis medications are approved and reimbursed, which centres treat severe disease, and which organisations answer the phone.

• Research notes

  An open, plain-language tour of the OpenEndo research programme — drug targets, repurposing candidates, virtual testing, and the honest gaps. Published straight from the repository.

• Knowledge

  Treatments, diagnostics and research concepts — published from the open knowledge base, with sources and confidence.

• How we verify

  What this site will and will not say, and where each kind of statement comes from.