“The Unsexy Truth: Navigating Intimacy, Chronic Pain, and the Fear of Being “Too Much””

I thought my silence in bed was protecting the people I loved. It was actually the loneliest thing I’ve ever done.

Before I met my partner, being intimate felt like a high-stakes game of “the reveal.” I spent years of my life terrified that if I spoke my needs, I would become “too much” before I was even enough. I feared that saying “not there” or “I need to stop” would be interpreted as a rejection of them, rather than a protection of myself—a lesson most women are taught long before chronic illness even enters the picture.

I’m Michelle. I’m a social worker, a student, and a woman nearing thirty who has spent years navigating life with endometriosis and adenomyosis, among other things. I’m writing this during Endometriosis Awareness Month because, for a long time, I thought my silence around what I truly needed due to my diagnoses alleviated the feeling that I was a burden and thus unlovable.

But the truth is rarely as eloquent as the advice suggests. While I can occasionally find the space to be kind to my body, my actual “norm” is defined by the energy I don’t have and the strength I can’t find. It’s the recurring heartbreak and grief of wanting to be the partner and person who can stay out late, only to be the one who needs to go home before the night has truly even begun—impacting intimacy in all forms of the word.

When Silence Breeds Shame

That’s why I need to talk about sex itself, because silence here breeds shame. Chronic pain doesn’t just interrupt the lead-up; it invades the act. It can mean flinching at a loving touch, having to constantly mentally scan for warning twinges mid-embrace, or the cruel paradox of craving closeness while your body refuses to comply.

Pleasure and pain become tangled together, and the work of unraveling them is exhausting. It requires a communication so raw and vulnerable—

using phrases different than the norm of “softer,” “slower,” or “not there,” and instead communicating “that hurts,” “I need a break,” and “I just can’t”

—that it can feel unsexy, until you realize that honesty is the deepest intimacy of all.

Learning to Live in a Home Under Siege

It’s hard to love a home that feels like it’s constantly under siege. When you live with chronic pain, working on your body image isn’t just about improving your relationship with your body on the outside; it’s also improving your relationship with your body on the inside—with the parts of yourself you can’t see, but can’t help but feel from.

It’s a constant negotiation with an internal landscape—the throb in your temples, the fire in your lower back, or in my case, the specific, relentless betrayal of my uterus and ovaries.

There is a specific kind of grief in feeling like your body is narrating a story different from the one you want to be telling—one of pain instead of ease and joy. I’ve had to work through the feeling that my body is an adversary to be negotiated with, rather than a home where I safely belong.

The High-Stakes Game of the Reveal

In those early days, the silence wasn’t just about shame; it was a survival tactic. I thought that if I could just perform “normalcy” for long enough, maybe the pain would take the hint and disappear. But silence only creates a wall, and I’ve come to learn that you can’t build intimacy on a foundation of hiding.

The Cost of Preservation

This is why we need to talk about how our chronic conditions impact our relationships. What we may medically require to heal—SSRIs, hormones, or other medications—can hinder the parts of ourselves that crave sex and connection.

And the non-medical toll is just as heavy. What we may need to simply preserve our strength—the early nights that cut dates short or cancel them altogether, the late mornings spent recovering, or the missed dinners because of a burst of pain—aren’t exactly “helpful” for the traditional image of romance either. These requirements of survival can feel like constant withdrawals from the shared life you’re trying to build, forcing you to find intimacy in the stillness rather than the activity.

Still Standing on the Battlefield

My norm is anything but what I dreamed it would be. Living with severe endometriosis and adenomyosis means living with a body that feels like it’s at war with itself.

It’s the graphic, brutal reality of internal tissue scarring and heavy bleeding that feels like a betrayal. It’s the deep, throbbing daily pain episodes that feel like someone is stabbing my uterus inside of me, making the simple act of sex, let alone existing, feel like a feat of endurance.

How could I not feel unsexy?

For a long time, I thought “coexisting” with my body meant figuring out how to be a better partner despite the pain. But I realize now that’s wrong, and that the real work is internal. Coexistence for me is refusing to hate the parts of me that are hurting. It’s the understanding that my body is not a broken machine or an adversary to be conquered—it’s a battlefield that I am still standing on.

I may just need a better strategy. One that makes it feel like a home instead of a war zone.

This isn’t just about making a relationship work; it is about making my life work. It’s the realization that my value isn’t tied to my physical “performance” or my ability to keep up.

I work every day to believe that my body—in all its wreckage and its limits—is still allowed to experience connection, joy, and its own erotic self. We deserve that acceptance, that okayness, and the permission to still belong to ourselves.

Did this story help you feel less alone?

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