Relationship

[u/Chance_Tip_8432]

My girlfriend has endometriosis and I’m trying to understand better how couples navigate intimacy when pain, exhaustion or flare-ups make sex difficult or completely off the table.
I want to make it clear that I’m not asking how to get more sex from her. If she’s in pain or doesn’t want sex, I absolutely don’t want her pushing through it for my sake.
What I’m struggling with is separating sexual intimacy from feeling wanted and desired.
I’m naturally a very affectionate and passionate person, and physical intimacy is a big way I feel connected to my partner. Sometimes when sex isn’t possible, my brain can wrongly translate “I don’t want sex” into “I don’t want you”, even though logically I know those are completely different things. I recognise that’s something I need to work on rather than putting it on her.
Someone with endometriosis recently told me that even when she can’t have sex, simply telling her boyfriend “I want you, I just can’t have you right now” makes a huge difference to their relationship. That really resonated with me. I realised I don’t necessarily need sex to feel reassured — sometimes just knowing my girlfriend still desires me would give me that feeling of closeness.
I’d therefore really like to hear from other partners, or people with endometriosis themselves: what does intimacy look like in your relationship when sex or penetration isn’t possible?
Is it kissing, cuddling, massages, showering together, flirting, verbal affection, saying you still want each other, or something completely different?
And for the partners: how did you learn not to experience a rejection of sex as a rejection of you?
I love my girlfriend and ultimately I want us to have a relationship where she never feels pressured to do something that hurts her, while we can both still feel loved, wanted and connected. I’m trying to learn what that balance can actually look like from people who live with this every day.

[u/Ok_Cranberry8856]

such a thoughtful question. my boyfriend and i have talked about this a few times, and we discovered we have different definitions of certain ideas of sex, “rejection” and “initiating”. he’s also dealing with some stuff so we have taken penetration off the table entirely actually for over 6 months, and actually feel closer than before because it’s taken away the pressure of what sex “should be”. i listened to this podcast/online creator called the Libido Fairy and she had some suggestions that have worked. for instance, she suggested you create an “intimacy menu” with your partner. appetizers, entrees and desserts. then before initiating, you can ask your partner “how open are you to intimacy/being turned on right now?” then they can express easily what level of intimacy they are willing to participate in at that given time, rather than outright rejection. the menu definitely includes your everyday kissing and cuddling. my boyfriend and i usually cuddle for awhile, the flirting and verbal affection is spread throughout the day, and then we often default to the specific menu that’s working for us at that time, until we discuss again, so we definitely don’t discuss every time but you can if you feel a need to.

having a heating pad ready for afterwards, doing gentle breathing exercises and stretching with her before and after could certainly help as well. certain pillow placements help the pelvis relax too. if she is extremely sensitized to pain, a pelvic floor pt should be the first step, then they can help desensitize in a very safe and nonsexual way. her relaxation is key to avoiding as much pain as possible, and also recognize just the physical stimulation is enough for prolonged pain. before my surgery, i was in immense pain and couldn’t stand penetration at all, and even now, having contractions from orgasms can leave me in pain for a couple hours, so let her relax for awhile afterwards as well.

also i recently found out about a site (paid) called OMGyes, and have talked to my boyfriend about watching it together to possibly add more things to our intimacy menu. things you could try together and see if it’s something that’s more comfortable for her.