Endometriosis: getting diagnosed and choosing treatment

If endometriosis is suspected, you can be offered treatment while tests are still going on. A scan that doesn’t show it isn’t the end of the process. Some patches of endometriosis are hard to see. What happens next depends on your symptoms, what tests show and what you want from treatment.

Getting a clear next step

It’s well known that diagnosis is often delayed. Symptoms overlap with other conditions, and waiting for surgery before offering care has added to the delays. This advice changed recently. ACOG’s updated guidance supports diagnosing from symptoms and examination, and starting treatment while scans are still going on.

At an appointment, the clinician will ask about your symptoms and family history. They may also talk to you about examining your tummy or doing an internal examination of the vagina. NICE advises examining the tummy if you don’t want an internal examination or it isn’t suitable. Bring a short note of how symptoms get in the way of your day and what treatments you’ve already tried.

What scans and laparoscopy can do

In the UK, NICE recommends an ultrasound scan through the vagina if endometriosis is suspected. If that isn’t suitable or you don’t want it, a scan over the tummy can be considered. A specialist ultrasound or an MRI scan may help check for deep endometriosis. Tests, referral and the first medicine treatment can all happen at the same time.

Laparoscopy is keyhole surgery that lets a surgeon look inside the pelvis. They may also take small samples of tissue. It can help confirm the diagnosis, including when scans haven’t shown endometriosis. It may be possible to treat it during the same operation, but the surgeon needs to talk this through with you first.

Ask what an operation would tell you that you don’t already know. You could ask whether the aim is to confirm the diagnosis, to treat areas of endometriosis, or both. Ask too what happens if symptoms carry on afterwards. ACOG advises talking through medicines and surgery so you can decide together.

Choosing treatment around your priorities

Pain relief can include anti-inflammatory medicines. Hormone options include combined hormonal contraception and progestogen treatments. Specialists may also talk about medicines that turn down the hormones made by the ovaries. These can help with pain, but they don’t cure endometriosis. Your pharmacist, GP or doctor can tell you whether they suit you and about side effects. Follow the leaflet and your prescription.

Surgery can remove patches of endometriosis and scar tissue. Symptoms can come back, and removing the womb isn’t a guaranteed cure. Before you decide, ask how likely surgery is to help with the problem that matters most to you. Ask about the risks too, and the plan if symptoms come back.

When pregnancy matters to the plan

Tell the clinician if you’re trying to get pregnant. Hormone treatment for endometriosis isn’t offered while you’re trying for a baby. Surgery may be considered if your fertility is affected, and you may be referred to a fertility specialist. That specialist may talk about fertility treatment, including IVF.

Getting care and support while you wait

Call 999 now (UK) or 911 (US), or your local emergency number, if pain in your pelvis is severe or getting worse, or comes with feeling faint, difficulty breathing or heavy vaginal bleeding. These symptoms need emergency care, even if you’re waiting for tests or already having treatment.

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

Book a GP appointment (UK), or see your doctor (US or elsewhere), if symptoms affect daily life or treatment hasn’t helped. NICE recommends a referral if the first treatment doesn’t help or symptoms carry on. If deep endometriosis or an ovarian cyst caused by endometriosis is suspected, you may need a specialist endometriosis service.

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

Before you leave an appointment, ask who will explain the results and what happens next if the scan doesn’t find a cause. Ask who to contact if treatment isn’t helping. Write down the plan in your own words.