Not Just a Bad Period: Signs It Could Be Endometriosis

TL;DR: Period pain that keeps you home, deep pain during or after sex, painful bowel movements or passing urine around your period, and trouble getting pregnant can all be signs of endometriosis. In the UK, diagnosis takes an average of 8 years and 10 months. Keep a pain and symptom diary, describe the impact on your daily life in plain numbers, and know that NICE guidance says a normal scan does not rule it out.

Maybe you have spent years being told it is "just a bad period". Your mother had painful periods, your aunties did too, and somebody at church or school told you it would ease once you had a baby. So you take your painkillers, curl up with a hot water bottle, miss a day of lectures or work, and carry on. But there is a point where pain stops being ordinary, and many women cross that point without anyone telling them. This post is about spotting that point, and about getting a clinician to take it seriously.

If you want the full picture of what endometriosis is, how it is staged and treated, start with endometriosis explained. If you are unsure whether your symptoms fit endometriosis or PCOS, read endometriosis vs PCOS. Here we focus on one thing: recognising the signs in your own life and turning them into a conversation that moves you forward.

Why does endometriosis take so long to diagnose?

Mostly because period pain is normalised, by families, by society, and sometimes by health workers. The World Health Organization notes that many health workers are unaware that the chronic pelvic pain of endometriosis is not normal, and puts the average time to diagnosis at between 4 and 12 years. In the UK, a 2023 survey of 4,371 diagnosed people by Endometriosis UK found the average had risen to 8 years and 10 months. Almost half had seen their GP 10 or more times before getting a diagnosis.

That delay is not a sign that your pain is small. It is a sign of how easily it gets waved away.

The signs NICE says should raise suspicion

The UK's National Institute for Health and Care Excellence (NICE) guideline on endometriosis, NG73, tells clinicians to suspect endometriosis when someone has one or more of these:

• Chronic pelvic pain, meaning pain in the lower tummy or pelvis that lasts or keeps coming back, sometimes outside your period too.
• Period pain that affects daily activities and quality of life. Not a twinge, but pain that keeps you from school, work, the market stall, or your children.
• Deep pain during or after sex. Pain felt deep inside rather than at the entrance.
• Bowel symptoms linked to your period, especially painful bowel movements.
• Urinary symptoms linked to your period, especially pain passing urine or blood in your urine.
• Infertility alongside one or more of the above.

The guideline applies to young women aged 17 and under too, so a teenager missing school every month deserves the same attention. NICE also asks clinicians to check whether a mother or sister has endometriosis, because it makes the condition more likely.

The WHO adds heavy bleeding, bloating, nausea, and effects on mental health, including depression and anxiety, to the picture. Not everyone gets every symptom, and the amount of pain does not always match how much endometriosis is there.

Pain that stops daily life is the key clue

The phrase that matters most in that list is "affecting daily activities". Plenty of people get some cramping. Endometriosis pain tends to cost you things. Ask yourself:

• Do you regularly miss work, school, or church because of your period?
• Have you fainted, vomited, or gone to A&E or a clinic with period pain?
• Do ordinary painkillers like paracetamol or ibuprofen barely touch it?
• Has the pain started earlier in your cycle, or lasted longer, over the years?
• Do you plan your life around your period, avoiding travel, exams, or events?

If several of these sound like you, that is worth raising, whatever anyone has told you before. Our guide to pelvic pain causes covers other conditions that can cause similar pain, and when pain is an emergency.

The symptoms people do not mention

Some of the most telling signs are the ones women feel too shy to say out loud, especially in a short appointment with a doctor you have just met.

Painful sex is one. It can strain relationships and many women assume it is a personal problem rather than a medical one. Bowel symptoms are another: diarrhoea, constipation, or sharp pain opening your bowels that flares around your period is sometimes labelled irritable bowel syndrome without anyone asking about your cycle. Bladder pain or blood in the urine around your period can be treated as repeated infections when the tests keep coming back clear.

The link is timing. If these symptoms get worse in the days before or during your period, say so. That pattern is the detail that points a clinician towards endometriosis.

Is endometriosis linked to infertility?

Yes, it can be. The WHO notes that among women with infertility, as many as 25 to 50 percent have endometriosis. Many people with endometriosis do get pregnant, some naturally and some with treatment, so it is not a sentence. But if you have been trying for a while and also have painful periods or any of the signs above, mention both together. NICE lists infertility as a sign when it comes alongside other symptoms. We cover the broader picture in fertility tips for getting pregnant.

How to describe your symptoms so they land

Doctors work fast, and vague descriptions get vague responses. NICE advises that keeping a pain and symptom diary can help these conversations. Turn your experience into specifics:

• Rate the pain from 0 to 10, on your worst day and on a typical period day.
• Count the cost: "I missed four days of work in the last three months", or "I have been to the clinic twice this year with period pain."
• Name the timing: when in your cycle the pain starts and stops, and whether it happens between periods.
• List the hidden symptoms: pain during sex, painful bowel movements, pain passing urine, all linked to your cycle.
• Say what you have tried: which painkillers, at what dose, for how long, and whether they helped.
• Mention family history: if your mother or sister has endometriosis.

"My periods are painful" can be brushed aside. "For the last six months my pain has been 8 out of 10 on the first two days, I have missed work every month, and I get sharp pain opening my bowels during my period" is much harder to ignore. For more on preparing, see how to talk to your gynaecologist.

What NICE says should happen next

Knowing the guideline helps you ask for the right thing, particularly in the UK, though the principles are useful wherever you are, from Lagos to Nairobi to Accra.

According to NICE NG73, a doctor may offer a short trial of painkillers, for example three months, and hormonal treatment such as the combined pill or a progestogen. Investigations and referral should happen alongside treatment, not only after it fails. NICE recommends offering a transvaginal ultrasound to everyone with suspected endometriosis, even if an examination is normal.

Importantly, NICE says endometriosis should not be ruled out because an examination and scan are normal, and that referral may still be needed. In other words, not all endometriosis shows up on a scan.

NICE says to refer to a gynaecology service if initial treatment does not work, is not tolerated, or is not suitable, if symptoms are harming your daily life, or if symptoms are persistent or keep returning. Suspected deep endometriosis, involving the bowel, bladder, or ureter, or an endometrioma (an ovarian cyst caused by endometriosis), should go to a specialist endometriosis centre. The guideline also says not to use the CA125 blood test to diagnose it.

If you have been on the same treatment for months with no relief, it is reasonable to ask, "Could this be endometriosis, and can I be referred to gynaecology?"

When to get help urgently

Seek urgent care for sudden severe pelvic or abdominal pain, pain with fever, fainting, very heavy bleeding with dizziness, or pain with a positive pregnancy test, which can signal an ectopic pregnancy. These need same-day attention, whatever the cause.

Keeping the record that gets you heard

The hardest part of being taken seriously is remembering details across months. This is where Asele can help. You can log your cycle and symptoms, including pain levels and the bowel, bladder, and sex-related symptoms that matter here, so the pattern builds over time. Before an appointment, the Asele Health Brief turns that history into a summary you can take to your doctor. And if you want to talk through what you are noticing, Amara, the in-app assistant, can chat with you in Yoruba, Hausa, Igbo, Swahili, French, or English. You can find us at Asele.

Only a clinician can diagnose endometriosis. This post is education, not medical advice. But you are allowed to say "this is not normal for me" and keep saying it until someone listens.

References

1. National Institute for Health and Care Excellence. Endometriosis: diagnosis and management (NG73), Recommendations. nice.org.uk
2. World Health Organization. Endometriosis fact sheet. who.int
3. Endometriosis UK. Years of being "dismissed, ignored and belittled": diagnosis report, 2024. endometriosis-uk.org