Sexual health is not a topic many of us are taught to talk about openly, and for people living with endometriosis or adenomyosis, that silence can be even harder to break. Pain, fatigue, bloating and unpredictable symptoms can all affect intimacy, and yet conversations about sex and chronic illness are still rare in doctor’s appointments, in friendship groups and even at home.

This year’s World Sexual Health Day, on 4 September, carries the theme “Every Body.” The World Association for Sexual Health describes it as a declaration that sexual health, rights, justice and pleasure belong to every person, in every body, without exception [1]. For our community, that message matters. Living with a chronic gynaecological condition should never mean being left out of conversations about intimacy, pleasure or wellbeing.

Endometriosis affects around 1 in 10 women and people assigned female at birth in the UK, roughly 1.5 million people, making it as common as diabetes [2]. Adenomyosis, where tissue similar to the womb lining grows into the muscular wall of the uterus, affects a further 10 percent and frequently occurs alongside endometriosis [3]. Both conditions are hormone-responsive and can cause chronic pelvic pain, heavy bleeding and, for many, pain during or after sex, known clinically as dyspareunia.

Research consistently shows this pain is not simply a physical symptom. A 2025 study in the Journal of Sexual Medicine found that the severity of pain during sex was directly linked to sexual distress, and that this connection was partly explained by how people felt about their bodies’ capabilities, not just their appearance [4]. In other words, chronic pain can quietly erode confidence in what your body can do, and that in turn affects how safe and present you feel during intimacy.

Pain does not only affect the person living with it. It reshapes how couples navigate closeness, spontaneity and communication, often leaving both partners unsure how to talk about what is happening.

Two misconceptions tend to show up again and again in our community. The first is that painful sex is just something you have to accept if you have endometriosis or adenomyosis. It is not. Pain during sex is a symptom worth raising with a GP or gynaecologist, not a fixed part of life with these conditions. The second is that struggling with intimacy means something is wrong with you or your relationship. It does not. It means you are managing a chronic illness that happens to intersect with a part of life that is rarely discussed with the openness it deserves.

A few starting points that others in our community have found helpful, alongside professional support:

• Talk before you’re in the moment. Conversations about pain, energy levels and what feels good are easier outside the bedroom, when there is no pressure attached.
• Track your cycle and symptoms. Pain often fluctuates, and knowing your own patterns can help you and a partner plan around lower-pain windows.
• Ask your GP about a referral to a pelvic health physiotherapist. Pelvic floor tension is common with these conditions and can contribute to pain during sex; physiotherapy is a recognised part of NICE guidance on endometriosis management [6].
• Consider psychosexual support. Services like Relate and NHS psychosexual therapy clinics work specifically with pain, anxiety and relationship strain connected to chronic illness [7].
• Give yourselves permission to redefine intimacy. Closeness does not have to mean any one specific act. Many couples find that broadening what intimacy looks like reduces pressure and reopens connection.

If you’d like to take this conversation further in person, Endometriosis South Coast is hosting a free endometriosis support morning with Let’s Talk Hants, focused on psychosexual therapy. Come along for peer conversation, refreshments, a short presentation and a Q&A session.

If sex has become something you dread, avoid or push through, that is worth raising with a healthcare professional, not something to carry alone. Every Body, this year’s World Sexual Health Day theme, is a reminder that sexual health and pleasure are not a luxury reserved for people without chronic illness. They belong to all of us.

If this piece has raised anything for you, our team is here, and so are the services listed below.

1. World Association for Sexual Health. Every Body: The Theme for World Sexual Health Day 2026. worldsexualhealth.net
2. Endometriosis UK. Endometriosis: Facts and Figures. endometriosis-uk.org/endometriosis-facts-and-figures
3. Endometriosis UK. Adenomyosis. endometriosis-uk.org/adenomyosis
4. Journal of Sexual Medicine (2025). Investigating the link between severity of dyspareunia and female sexual distress among a group of women with endometriosis: the mediating role of body functionality appreciation. academic.oup.com/jsm
5. Psychology & Sexuality (2024). ‘You feel like you’re drifting apart’: a qualitative study of impacts of endometriosis on sex and intimacy amongst heterosexual couples. DOI: 10.1080/14681994.2024.2306316
6. National Institute for Health and Care Excellence. Endometriosis: diagnosis and management (NG73), updated 2024. nice.org.uk/guidance/ng73
7. Relate. Relate and the NHS. relate.org.uk/relate-nhs

This article is for general information and does not replace individual medical advice. If you are experiencing pain during sex or changes to your sexual wellbeing, please speak with your GP or gynaecologist.