Intimacy & Chronic Pelvic Pain

When Endometriosis Touches Intimacy: Care That Begins in Community

Pain rarely stays in the body. For many people living with endometriosis, it also reaches into desire, closeness, and the way they see themselves. Here's what compassionate, whole-person support can look like — and why none of us should be doing this work alone.

By Corenia Murphy, LMHC-CST · AASECT-Certified Sex Therapist

If you live with endometriosis, you already know it's far more than "bad periods." It's a systemic, inflammatory condition that has been found on the bowel, bladder, diaphragm, and beyond — and its effects don't stop at the pelvis. They ripple into energy, mood, relationships, and intimacy. And yet the average person still waits 7–10 years for a diagnosis, often after being told the pain was normal, exaggerated, or something they should be able to push through.

This past June, I had the privilege of presenting at the National AASECT Conference on Navigating Pelvic Pain and Intimacy — Supporting Clients with Endometriosis and Chronic Pelvic Pain. The room was full, the conversation was generous, and one thing came through again and again: clinicians want to do better for this community, and they're hungry for tools that treat the whole person. I'm grateful to the Center for Endometriosis Care for the chance to bring some of that conversation to you here.

I want to start where I always start, with my clients and in my writing: you are not broken. You are navigating an impossible situation with remarkable resilience. That stance isn't a platitude — it shapes every part of how good care gets built.

Why intimacy is so often the part no one talks about

Painful sex — dyspareunia — is one of the most common and least-discussed experiences in endometriosis. It can show up as deep pain during or after intercourse, sometimes lasting for hours or days. Over time, the body learns to brace. Anticipating pain quiets desire and tightens the pelvic floor, which can make the next experience hurt more. It's a loop, and it is not a personal failing. It's a predictable, human response to living with pain.

Alongside the physical piece, there's often grief: for a body that feels different than it used to, for a sexual self that feels out of reach, for the ease that intimacy once had. Partners can feel helpless or shut out. Many couples quietly stop talking about sex altogether, and avoidance and resentment fill the silence. Naming all of this — gently, without shame — is usually the first real relief.

Pleasure is not the absence of pain. It is the presence of possibility, agency, and self-compassion.

Clearing away the myths first

Before we can talk about intimacy, we often have to clear away the misinformation that clients (and sometimes their providers) have absorbed for years. A few of the ones I hear most:

Undoing these narratives matters because they change what people believe they deserve. When someone has been told for years that their pain is normal or self-inflicted, they stop asking for help — and the shame compounds.

A whole-person lens: biological, psychological, social

The care that helps most looks at all the layers at once. On the biological side, that means honoring tissue damage, inflammation, nerve sensitization, hormonal shifts, and central pain amplification as real, physical drivers. On the psychological side, we tend to medical trauma, anxiety, depression, grief, and the fear-avoidance that pain understandably creates. And on the social side, we hold everything around the person: partner dynamics, family and cultural beliefs about pain and sexuality, healthcare access, and the very real losses — of career, of plans, of a hoped-for path to parenthood — that can accompany this disease.

This is also where equity has to enter the conversation honestly. Pain is minimized more often, and for longer, for people already facing bias. Research shows Black patients wait longer for diagnosis and receive less adequate pain management. LGBTQIA+ patients — including the trans and nonbinary people who live with endometriosis and are too often erased from the conversation — frequently encounter provider bias and a lack of affirming care. Economic barriers limit access to specialists, pelvic-floor physical therapy, and mental-health support. Naming these gaps out loud is part of closing them.

What actually helps

There's no single fix, but there's a great deal that works — especially in combination. In my practice and in the training I shared at AASECT, some of the most useful, evidence-informed approaches include:

• Pain neuroscience education, so clients understand that pain can be real even when imaging looks "normal," and can advocate for care that addresses the nervous system, not just surgery.
• Adapted sensate focus — pressure-free, client-led touch that starts where it's comfortable, uses positioning support, and keeps clear stop signals, rebuilding safety and pleasure at the client's pace.
• Communication and boundary tools for naming what feels good, what hurts, and what's needed — without guilt — and for bringing partners in as allies.
• Expanding the definition of intimacy beyond penetration, so connection isn't held hostage by pain.
• Self-advocacy support: symptom tracking, "medical scripts," and rehearsing appointments so clients walk in prepared and are more likely to be heard.

None of this replaces excellent medical care — it works alongside it. The best outcomes I see come from a genuine multidisciplinary team: a skilled excision surgeon, pelvic-floor physical therapy, thoughtful medical management, and mental-health and sex-therapy support, all in communication with one another. That team approach is exactly the model the Center for Endometriosis Care has championed for decades, and it's the difference between managing a patient and truly partnering with a person.

This work is built in community

I want to be clear about something that matters to me deeply: none of this is mine alone. Everything I brought to the AASECT stage was shaped by patients who trusted me with their stories, by advocates who refused to be dismissed, by surgeons and pelvic-floor therapists and researchers, and by peer communities that hold people up on the hard days. Healing happens in relationship. We are all still learning, and we are forever pushing — for better support, better research, and better patient outcomes. Patients lead; the rest of us follow and amplify.