How to get an endometriosis diagnosis in the UK

If you've been told your pain is "just periods", that it's normal, or that you're making a fuss about nothing, you are not alone, and you are not imagining it.

Endometriosis UK's latest report, published in March 2026, found that the average wait for a diagnosis has gone up again.

Long waits are not usually because the symptoms weren't there. Often it's because nobody could see the whole picture. Each appointment starts from scratch, with a different doctor, ten minutes, and whatever you can remember on the day.

What the guidance says

The NICE guideline on endometriosis (NG73), used in England and Wales, says doctors should suspect endometriosis if you have one or more of these:

• chronic pelvic pain
• period pain that affects your daily life
• deep pain during or after sex
• bowel symptoms linked to your cycle, especially painful bowel movements
• urinary symptoms linked to your cycle, especially blood in your urine or pain passing urine
• difficulty getting pregnant alongside any of the above

It also says:

• keeping a pain and symptom diary can help your conversations with your doctor
• a normal examination, ultrasound or MRI does not rule endometriosis out
• you can be referred to gynaecology if your symptoms are severe, persistent or keep coming back, or if treatment isn't working
• laparoscopy (keyhole surgery) can be used to diagnose it, even if a scan was normal

In Scotland and Northern Ireland, ask your GP what the local referral pathway is.

What to track before your appointment

A record over time is far more powerful than a memory on the day. Try to keep track of:

• Pain: where it is, how bad (0–10), how long it lasts, and where you are in your cycle
• Impact: days off work or school, plans cancelled, sleep lost
• Bowel and bladder: anything that changes with your cycle
• Bleeding: how heavy, how long, and any bleeding between periods or after sex
• What you've tried: painkillers, contraception, other treatments, and whether they helped
• Appointments: who you saw, what was said, and what was supposed to happen next
• Family history: whether your mum, sisters or aunts have had endometriosis or similar symptoms

How to walk in prepared

1. Write down the one thing you most need them to know, and say it first.
2. Bring your record. Months of patterns are harder to dismiss than "it's been bad lately".
3. Say the words: "Could this be endometriosis?" and ask what would rule it in or out.
4. If a scan was normal, remember the guidance says that doesn't rule it out, and ask what happens next.
5. Ask for a referral to gynaecology if your symptoms are severe, persistent or keep coming back.
6. Before you leave, check what's been agreed and when you'll hear back. Write it down.

Where SIS comes in

SIS is a free, private app that keeps your whole story in one place: symptoms, appointments, medications, procedures and family history, on one timeline. It shows the patterns over months and years and builds a Doctor Summary you can take with you.

So when you walk in, the story walks in with you.

SIS was built by a founder who spent seven years not being heard. Read her story.

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Important: this page is information, not medical advice. If you have sudden severe pain, very heavy bleeding, fainting, or you feel very unwell, seek urgent medical help (NHS 111, or 999 in an emergency).

Sources:
Endometriosis UK, The State of Endometriosis Care in the UK (March 2026; survey of 3,075 people, Sept–Oct 2025).
NICE, Endometriosis: diagnosis and management (NG73).
Last reviewed: October 2026.