Endometriosis: getting diagnosed and choosing treatment

You can be offered treatment for suspected endometriosis while tests are still under way. A scan that does not show it is not the end of the assessment: some patches are difficult to see. The next step depends on your symptoms, what tests show and what you want from treatment.

Getting a clear next step

Delays in getting a diagnosis are well recognised. Symptoms overlap with other conditions, and relying on surgery before offering care has contributed to waits. Advice has changed recently: ACOG’s updated guidance supports a clinical assessment and treatment while imaging investigations continue.

At an appointment, the clinician will ask about your symptoms and family history. They may also discuss an abdominal or internal vaginal examination. NICE advises an abdominal examination if an internal examination is declined or unsuitable. Bring a short note of how symptoms interrupt your day and what treatment you have already tried.

What scans and laparoscopy can do

In the UK, NICE recommends a vaginal ultrasound for suspected endometriosis, with an ultrasound over the abdomen considered when a vaginal scan is unsuitable or declined. A specialist ultrasound or MRI may help assess deep endometriosis. Investigations, referral and initial medicine treatment can happen alongside one another.

Laparoscopy is keyhole surgery that lets a surgeon look inside the pelvis; tissue samples may also be taken. It can help confirm the diagnosis, including when scans have not shown endometriosis. Treatment may be possible during the same operation, but the surgeon needs to discuss that with you beforehand.

Ask what an operation would add to the information already available. You could ask whether the aim is to confirm a diagnosis, treat areas of endometriosis, or both. Ask what happens if symptoms continue afterwards, too. ACOG advises discussing medicine and surgery so you can decide together.

Choosing treatment around your priorities

Pain relief can include anti-inflammatory medicines. Hormonal options include combined hormonal contraception and progestogen treatments; specialists may discuss medicines that suppress ovarian hormone activity. These approaches can help with pain, but they do not cure endometriosis. Your pharmacist, GP or doctor can advise on suitability and side effects; follow the leaflet and your prescription.

Surgery can remove patches of endometriosis and scar tissue. Symptoms can return, and removal of the womb is not a guaranteed cure. Before deciding, ask about the likely benefit for the problem that matters most to you, the risks and the plan if symptoms return.

When pregnancy matters to the plan

Tell the clinician if you are trying to get pregnant. Hormonal treatment used to manage endometriosis is not offered while trying to become pregnant. Surgery may be considered when fertility is affected, and referral to a fertility specialist can be part of care. That specialist may discuss fertility treatment, including IVF.

Getting care and support while you wait

Call 999 now (UK) or 911 (US), or your local emergency number, if pelvic pain is severe or getting worse, or comes with faintness, breathing difficulty or heavy vaginal bleeding. These symptoms need emergency assessment even while you are waiting for tests or already receiving treatment.

Get help today from NHS 111 or an urgent GP service (UK), or your doctor or urgent care service (US or elsewhere), for pelvic pain if you are pregnant or could be pregnant, or if pelvic pain comes with a very high temperature or feeling hot, cold or shivery. Use the emergency route above for severe symptoms.

Book a GP appointment (UK), or see your doctor (US or elsewhere), if symptoms affect daily life or treatment has not helped. NICE recommends referral when the first treatment does not help or symptoms continue. Suspected deep endometriosis or an endometriosis-related ovarian cyst may need a specialist endometriosis service.

Ask about support for pain and emotional wellbeing as well as the next test. The NHS signposts Endometriosis UK and its support groups. WHO also describes physiotherapy, psychological support and local patient groups as possible parts of care.

Before leaving an appointment, ask who will explain the results, what the next step will be if the scan does not find a cause, and who to contact if treatment is not helping. Write down the agreed plan in words you would use yourself.