Endometriosis: symptoms, the wait for diagnosis and what helps

SASian Anderson, Writer and editor, MyGLP. Sources checked 5 November 2026.

What endometriosis is

Endometriosis is a long-term condition where cells similar to the lining of the womb grow in other parts of the body. The NHS endometriosis page names the ovaries, the fallopian tubes and the lining of the pelvis as the usual sites. Symptoms often follow your cycle. There is no known cure, but treatment can control pain and protect fertility.

Endometriosis UK puts the number at 1 in 10 women and people assigned female at birth of reproductive age, or about 1.5 million people in the UK. The charity estimates the cost to the UK economy at £8.2bn a year in treatment, lost work and healthcare.

The symptoms NICE says should raise suspicion

The NICE guideline on endometriosis, NG73, tells clinicians to suspect endometriosis in women and girls, including those aged 17 and under, with one or more of these:

• Chronic pelvic pain.
• Period pain that affects daily activities and quality of life.
• Deep pain during or after sex.
• Bowel symptoms tied to your period, in particular painful bowel movements.
• Urinary symptoms tied to your period, in particular blood in the urine or pain passing urine.
• Difficulty getting pregnant alongside any of the above.

The NHS adds extreme tiredness, heavy periods, low mood and anxiety, and, more rarely, pain or bleeding in other places such as the chest. The NHS names irritable bowel syndrome among the conditions with overlapping symptoms, so we have a separate page on endometriosis or IBS.

Why diagnosis takes almost nine years

In March 2024, Endometriosis UK published a survey of 4,371 people with a diagnosis. The average time from first symptoms to diagnosis was 8 years and 10 months, up 10 months since 2020. In the same survey, 78% said a doctor had told them they were making a fuss about nothing, or something like it.

The government heard the same thing. In the call for evidence behind the Women's Health Strategy for England (2022), 84% of respondents said a health professional had not listened to them at some point, and many said they waited years for an endometriosis diagnosis. Women reported being told heavy, painful periods were normal or that they would grow out of them.

In December 2024 the cross-party Women and Equalities Committee of MPs reported on menstrual health. Endometriosis UK summarises its calls: diagnosis in under two years by August 2029, training for primary care staff to take symptoms seriously and challenge racial bias, and an end to calling conditions like endometriosis "benign". The committee said menstrual symptoms "must never be normalised or dismissed". This is about evidence and systems catching up, and many GPs want the same changes.

What your GP should do

NG73 sets out the first steps. Knowing them helps you ask for the right thing.

1. Ask about your symptoms and examine your tummy and, with your consent, your pelvis.
2. Offer a transvaginal ultrasound scan to anyone with suspected endometriosis. A scan on the tummy is the option if you decline or the internal scan is not suitable.
3. Consider a trial of about 3 months of paracetamol or an anti-inflammatory such as ibuprofen, alone or together.
4. Offer hormonal treatment, such as the combined pill or a progestogen.
5. Refer you to gynaecology if treatment does not work, you cannot tolerate it, symptoms keep coming back or affect daily life, or the examination finds something.

Two points in NG73 matter most when you feel brushed off. First, a normal examination and a normal scan do not exclude endometriosis, and you may still need a referral. Second, NICE says a symptom diary can aid the conversation. Note pain scores, where the pain is, the day of your cycle, bowel and bladder symptoms, and days missed from work or study. Under 18s should be referred to a paediatric and adolescent gynaecology or specialist endometriosis service.

Laparoscopy and other tests

NICE says the ultrasound helps find endometriomas (cysts on the ovary) and deep endometriosis. A clear scan is not the end of the matter. NICE says to consider laparoscopy, keyhole surgery with a camera passed through a small cut in the tummy, even when imaging was normal. The NHS notes the surgeon can remove areas of endometriosis during the same operation.

Treatment

The NHS also lists support for living with long-term pain and fatigue, and mental health support for low mood or anxiety. Ask for both. They are part of treatment.

Endometriosis and fertility

Endometriosis UK says endometriosis is found in up to 30 to 50% of women with infertility. NG73 is clear on two points. For endometriosis outside the bowel, bladder and ureter, surgery to remove it improves the chance of a natural pregnancy. Hormonal treatment, alone or with surgery, does not improve natural pregnancy rates, so it is not offered to women who are trying to conceive. The NHS lists referral to a fertility specialist as part of support, so ask about it if pregnancy is a goal.

Weight loss medicines and endometriosis

Mounjaro and Wegovy are not treatments for endometriosis. The NHS tirzepatide page lists type 2 diabetes and obesity as what it is for. If you have endometriosis and take one, three points apply.

• The pill is a common endometriosis treatment. The MHRA warned in June 2025 that Mounjaro may reduce how well oral contraceptives work in people who are overweight, and advised a non-oral method as well. The NHS advises a barrier method for 4 weeks after starting Mounjaro and 4 weeks after each dose rise. If the pill is your endometriosis treatment, ask your GP whether a coil, implant or injection suits you better.
• Pain from endometriosis can be confused with the stomach pain, constipation and diarrhoea the medicines cause. A diary helps tell them apart.
• If you plan a pregnancy, the NHS says stop Mounjaro at least 4 weeks before trying, and the MHRA says some medicines need stopping at least 2 months before. Our fertility guide covers the detail.

Getting your symptoms taken seriously

Bring your diary. Say the words "I would like to be assessed for endometriosis under NICE NG73". Ask for the ultrasound, and ask what happens next if the scan is normal. If pain continues after 3 months of treatment, ask for referral. You can see a different GP at the same practice, and our guide to getting heard at the GP sets out your rights. Endometriosis UK runs a helpline on 0808 808 2227.

Sources

1. Endometriosis (NHS)
2. Endometriosis: diagnosis and management (NG73), recommendations (NICE)
3. Endometriosis facts and figures (Endometriosis UK)
4. Dismissed, ignored and belittled: diagnosis survey, March 2024 (Endometriosis UK)
5. Women and Equalities Committee report on menstrual health, December 2024 (Endometriosis UK)
6. Women's Health Strategy for England (2022) (Department of Health and Social Care)
7. Tirzepatide (NHS)
8. Period pain (NHS)
9. Weight loss injections: contraception warning for women, June 2025 (MHRA, via the Department of Health Northern Ireland)