When people hear "sexual side effects," they may immediately think about changes in sexual functioning.

And yes, cancer and its treatments can cause very real physical changes. Depending on the cancer and treatment, you may experience vaginal dryness or tissue changes, changes in sensation or orgasm, menopausal symptoms, or infertility. These are the direct impacts on sexual functioning.

There are other physical experiences that are not directly related to sexual functioning, and yet greatly impact someone’s experience of sexuality. Some of these symptoms include fatigue, neuropathy, nausea, pain, and urinary and bowel changes.

But sexual health isn't only about what our bodies physically can or cannot do.

Cancer can change how you feel about your body.

You may not feel as attractive, sexy, feminine, confident, or comfortable in your body as you once did. These ways of relating to your body and your sexuality are called your sexual self-schema. This experience of yourself as a sexual person can change because your body may look different, feel different, or respond differently than it used to. Something that once felt pleasurable may feel neutral, uncomfortable, or even painful.

Cancer can also affect your emotional experience of sex. Anxiety, depression, fear of pain, worries about sexual functioning, or uncertainty about what your body will do can all find their way into intimate moments.

And then there are relationships.

A relationship that once existed primarily between partners and lovers can shift into a relationship between patient and caregiver. Conversations that used to be about work, family, plans, or sex may suddenly revolve around appointments, symptoms, medications, and test results.

None of this happens in isolation.

Our physical, emotional, sexual, and relational experiences are deeply connected.

In my work, I hear some version of this more often than I wish I did. Sometimes it's about a body that no longer responds how it used to. Maybe desire seems to have disappeared, or sex hurts instead of feeling good. You might not recognize yourself in the mirror anymore. Or you desperately want to feel close to your partner but don't know how to move from patient and caregiver back toward partners and lovers.

These experiences can feel incredibly isolating, especially when no one around you seems to be talking about them.

So I want to say clearly:

You are not alone. And you are not broken.

Your body and your relationships have been through something significant.  It makes sense that sexuality and intimacy may have been affected, too.

The question doesn't have to be, How do I make everything work exactly the way it did before?

Sometimes a more helpful question is:

‍ ‍What do intimacy, pleasure, and connection look like for me (or us) now?

One of the challenges with sexual health and cancer is that these conversations don't always happen routinely in medical care.

There are many reasons for that. Providers often express having limited time, training, or resources. They might also feel uncomfortable initiating the conversation, based on their own personal experiences or biases, or worry that bringing up sexuality will make you uncomfortable.

Unfortunately, the absence of a conversation can leave you assuming your concerns aren't appropriate to bring up with your oncologist or that nothing can be done.

If this is where you are - wanting to talk with your provider about sexual concerns that have arisen since your cancer diagnosis - and you aren’t sure where to start, here are some tips:

• Before an appointment, write down your questions. It can be surprisingly difficult to remember what you wanted to ask once you're sitting in the exam room, especially when you're nervous.

• You also don't necessarily have to start with your oncologist. If there is a nurse, nurse practitioner, physician assistant, social worker, or another member of your healthcare team you trust, start there. You can even ask them to help you have this conversation with your oncologist.

  • You could say something like: "Sex has become more challenging since treatment. I’d like to talk about it with the team, can you help me do that?"

• Depending on what you're experiencing, support might include a sexual medicine specialist, pelvic floor physical therapist, sex therapist, or another clinician with expertise in sexual health.

• And if the person you ask seems uncomfortable, remember that their discomfort does not mean your question was inappropriate.

Cancer doesn't only happen to an individual. It enters relationships.

Partners often want to protect each other, which can show up by holding back fears or difficult feelings because you don't want to add one more thing to your partner's plate.

‍ ‍The intention is loving. The result can be emotional distance.

So, what might help? Here are a few places to start.

Ask: What makes you feel close to me?

And be willing to answer the same question yourself.

Maybe it's cuddling on the couch. A kiss when someone gets home from work. Going on a date and agreeing not to talk about cancer for an hour. Holding hands. Having an interesting conversation. Laughing together. Sleeping close to each other. There are no wrong answers.

Intimacy doesn't have to begin with sex.

In fact, sometimes rebuilding emotional and physical connection without an expectation that it will lead to sex is exactly where a couple needs to begin.

Say what you need, not just what isn't working

Talking about intimacy can be vulnerable, particularly when cancer has already changed so much.

One framework I shared during the presentation was Fact, Belief, Feeling, Need.

Imagine that your partner has touched you less since treatment.

You could say:

• Fact: "I've noticed that you touch me less since my treatment."

• Belief: "I'm scared it's because you don't find me as attractive anymore."

• Feeling: "When we don't touch, I feel lonely. I miss being close to you, and sometimes I feel angry that cancer has affected this part of our relationship, too."

• Need: "I'd really like more affectionate touch, maybe a hug or kiss when we get home or cuddling while we're watching TV."

That conversation communicates something very different from, You never touch me anymore.

It gives your partner a chance to understand not only what you've noticed, but what meaning you've made of it, how it feels, and what might help.

Your sexual "menu" is allowed to change

Most of us develop a sexual menu over time.

We know the activities we enjoy, and we have a general sense of what "sex" looks like.

Then enters cancer.

Something that used to feel good may hurt. Your body needs more time to become aroused. Fatigue can make certain kinds of sex unrealistic. A surgery may change sensation. Desire may no longer appear spontaneously.

Trying to order from the old menu might not work for you anymore. And hoping for a change by ordering over and over from that same menu can become really frustrating.

So perhaps it's time to make a new one.

You can start by asking each other these questions:

What still feels good?

What doesn't?

What have you never tried?

What might feel pleasurable without requiring your body to perform in a particular way?

You might explore different types of touch, positions, toys, massage, masturbation, fantasy, sensory experiences, or ways of being physically close that aren't centered around penetration or orgasm.

If you're partnered, create the menu together.

The goal isn't to prove that your body can still do what it used to do. The goal is to discover what feels good now.

Shift from performance to pleasure

We receive a lot of messages about what "successful" sex is supposed to look like.

Desire should appear spontaneously. Bodies should become aroused quickly. Sex should progress in a predictable order. Penetration is the main event. And everyone should orgasm.

And if any of those things don't happen, something went wrong.

That's an enormous amount of pressure to place on a sexual experience, especially after your body has changed.

So, what if the goal wasn't performance? What if instead the goal was play?

And what if the expectation wasn’t orgasm, and instead it was pleasure?

Pleasure-play sex leaves room for curiosity.

‍ Does this feel good?

Do I want more of this?

What happens if we try something different or new?

What does my body respond to now?

It also leaves room for an experience to be worthwhile without ending in orgasm or looking the way sex looked before cancer. Sometimes removing the requirements creates more space for pleasure to actually happen.

Know why connection matters to you

Another question I often ask people is:

Why do you want to have sex?

And if you don’t want to have sex, why do you wish you wanted to have sex?

The answers vary tremendously, spanning from missing pleasure, to wanting to feel playful or sexy, to wanting to meet your partner’s needs, and anything else in between.

Understanding your "why" doesn't magically create desire, but it can help you understand what you're actually trying to reclaim.

And sometimes what you miss isn't sex itself. It's closeness, being touched without feeling like a patient, feeling desirable, or having fun with your partner.

Knowing your why can give you a much clearer place to begin. And it is something you can reconnect to when it feels really hard to keep trying.

On Saturday, I linked a handful of helpful resources to support sexual wellbeing. In case you didn’t get access to them, I wanted to include them here.

• Sexual health providers:

  • Sexual medicine specialists

    • Sexual Medicine Society of North America

    • American Board of Sexology

  • Pelvic floor physical therapists

    • The Academy of the American Physical Therapy Association

    • Pelvic Global

  • Sex therapists and counselors

    • American Association of Sex Educators, Counselors, and Therapists

    • Society for Sex Therapy & Research

• Sexual wellness practices:

  • Mindfulness practices

  • Body image practices

  • Managing performance anxiety

  • Grounding exercises

  • Partner communication

  • Sensate Focus in Sex Therapy: The Illustrated Manual

  • Esther Perel’s blog – why eroticism should be a part of your self-care plan

  • Sexual menu‍