You can be in agonising pain and still look completely fine. That is one of the hardest parts of living with endometriosis or adenomyosis: the gap between how much pain someone is carrying and how little of it shows on the outside.

This September, as part of our chronic pain awareness content, we want to talk honestly about what it is really like to live with a condition that fluctuates, that other people cannot see, and that has too often been dismissed as “just a bad period.”

Endometriosis and adenomyosis do not behave the same way every day. Someone might manage a full day at work on Monday and be unable to get out of bed by Wednesday. This unpredictability is confusing for the people living with it and for those around them, and it is one reason invisible illnesses are so easily misunderstood. Nothing about someone’s appearance tells you whether that day is a good one or a very bad one.

This inconsistency is not a sign that symptoms are exaggerated or “all in someone’s head.” Chronic pelvic pain conditions are increasingly understood to involve real, measurable changes in how the nervous system processes pain signals, on top of the underlying tissue changes these conditions cause ^[1]. The fluctuation is part of the condition, not a contradiction of it.

For too long, period pain severe enough to disrupt daily life has been treated as ordinary. Endometriosis UK’s most recent diagnosis report found that the average time from first symptoms to diagnosis in the UK is now 8 years and 10 months, up from 8 years in 2020 ^[2]. Within that report, 78 percent of people said they had experienced their symptoms dismissed by a healthcare professional, and 47 percent had visited their GP more than ten times before getting a diagnosis ^[2].

This kind of normalisation delays diagnosis and treatment, and it teaches people to distrust their own experience of pain. Pain that stops you going to work, school or social events, that does not ease with over-the-counter painkillers, or that comes with heavy bleeding, pain during sex, or bowel or bladder symptoms is not something to simply push through. It is a reason to see a GP and ask directly whether endometriosis or adenomyosis could be the cause. NICE guidance recommends that healthcare professionals consider referral to a gynaecology service if initial management is not effective, if symptoms persist, or if there are signs that need further investigation, rather than waiting years for symptoms to be taken seriously ^[3].

Chronic pain does not stay contained to the body. A 2023 systematic review found that people with endometriosis face a significantly higher risk of clinically recognised depression (48 percent higher risk) and anxiety (38 percent higher risk) compared with people without the condition, alongside consistently lower quality of life scores across every measure used in the studies reviewed ^[1]. This is not a personal failing. It reflects what sustained, poorly managed pain does to a person’s daily life, sleep, relationships and sense of control.

• Keep a symptom diary. Recording pain levels, timing, and any triggers gives you and your doctor something concrete to work from, and can help build a case for referral if you are not being heard.
• Ask about the full range of management options, not just painkillers. NICE guidance highlights hormonal treatments, pain management support and, where appropriate, surgery as part of the treatment picture, alongside pelvic health physiotherapy ^[3].
• Look into workplace adjustments. Depending on how significantly symptoms affect daily life, endometriosis and adenomyosis may meet the definition of a disability under the Equality Act 2010, which can entitle you to reasonable adjustments at work ^[4]. Endometriosis UK has guidance on how to start that conversation with an employer.
• Build a support network that understands fluctuation. That might mean connecting with others who live with chronic illness, whether through a local support group, an online community, or organisations like ours.
• Look after your mental health alongside your physical health. Given how closely linked chronic pain and mental health are, asking your GP about psychological support is a reasonable and evidence-based part of managing these conditions, not a separate issue.

If you take one thing from this piece, let it be this: persistent pain is never something you should have to simply accept. Whether you are newly noticing symptoms or have spent years being told your pain is normal, you deserve to be believed, investigated properly, and supported in finding what helps.

1. Frontiers in Public Health (2023). The impact of endometriosis on depressive and anxiety symptoms and quality of life: a systematic review. frontiersin.org
2. Endometriosis UK (2024). Years of being “dismissed, ignored and belittled”: Endometriosis UK urges improvement to deteriorating diagnosis times. endometriosis-uk.org/diagnosis-report
3. National Institute for Health and Care Excellence. Endometriosis: diagnosis and management (NG73), updated 2024. nice.org.uk/guidance/ng73
4. Endometriosis UK. Is endometriosis a disability? endometriosis-uk.org/endometriosis-it-disability

This article is for general information and does not replace individual medical advice. If you are concerned about your symptoms, please speak with your GP.