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Endometriosis is a condition where endometrial tissue, which lines the uterus, grows outside of the uterus in other parts of the pelvic region. This tissue can grow on the ovaries, fallopian tubes, bladder, bowel, and pelvic lining. Sometimes, it can even grow in other parts of the body. It’s a chronic condition that can be debilitating, drastically impacting one’s quality of life. It can cause severe menstrual cramps, pain during sex, heavy periods, and infertility. Some people with endometriosis may also experience painful urination or bowel movements, chronic fatigue, and other symptoms.
The psychological impact can also be significant: living with endometriosis can cause stress and depression, both from trying to manage symptoms as well as having difficulty being taken seriously by doctors.
Needless to say, endometriosis can really mess with your sex and dating life.
Navigating dating with endometriosis may not be easy, but it is possible. Having spoken with some folks who have endometriosis, I’ve gathered the most common questions, fears, and concerns that come up. I’ve also spoken with people who don’t have endometriosis themselves, but who have sex with people who have uteruses, about their expectations and needs if they were dating someone who did.
This guide combines this research with my own experiences and training as an intimacy coach, in helping people to connect more deeply with themselves and with others.
In this guide I’ll be answering:
The first thing to say is that this is a really personal choice, and you don’t owe anyone a disclosure. That said, from speaking with people who enjoy having sex with vagina-owners, the consensus seems to be that a good time to bring endometriosis up is when things start getting more explicitly sexual, whether over text on in person, and especially if you’re discussing desires or sexting.
There were also plenty of people who said they felt that PIV sex would never be expected, no matter what flavour of chatting had been happening beforehand. But if disclosing before you’re actually in bed together takes some of the pressure off for you, then it’s worth doing.
If the conversation isn’t going in that direction but you’d like it to, it’s up to you to start asking some questions. A good way to frame this could be to start asking about desires or fantasies, or sharing some things that you know you enjoy. These conversations are great to practice for all of us, but for folks who know that some activities are less pleasurable, it can be a really great way to take control of sharing your wants and needs.
It doesn’t have to be all-or-nothing when you’re first getting to know someone. You can mention that you have a chronic condition without needing to say what it is, or everything about how it affects your life.
If talking about your diagnosis comes up in relation to your everyday life (needing to change plans or otherwise manage your illness), it’s completely up to you how much you disclose. Discussing one aspect of how endometriosis shapes your life doesn’t mean that you have to start talking about sex if you’re not ready to – even if you’re asked about it. Being able to say, “I appreciate your curiosity, can I answer that later? It feels a little personal right now” can be really helpful.
It might also be interesting to open some self-enquiry into what ‘too much’ means to you. If you tend towards revealing all, what is your motivation for that? Is there some insecurity or anxiety that is calmed by telling the other person everything right away? This could be a good opportunity to explore your own boundaries and check in with yourself: are you wanting to disclose from a place of security and authenticity, or from a place of fear and uncertainty?
Sharing your diagnosis in relation to how it impacts the sex you have doesn’t have to be a big deal. The way we talk about things can have a huge impact on how they are received. So if you share your diagnosis with a focus on all the limitations and difficulties it may bring up, that’s what the other person will likely focus on too. If instead you’re able to share it with the perspective of all the other fun sexual activities you’d love to explore when PIV isn’t feeling right, then you’re framing the situation in a much more positive way.
So if things have started to feel flirty and sexual, and perhaps you’ve started talking about things you might like to try, it may be time to mention that PIV may be off the table for you – in a way that focuses on the positives.
This might sound like…
“Just so you know, I have endometriosis which means PIV isn’t always that pleasurable for me. I’m really curious to explore X though, and I really love the thought of trying Y with you.”
And if getting that explicit about sexual desires doesn’t feel quite right to you just yet, but things are still feeling flirty, it can be as simple as this:
“I’m really enjoying chatting with you! I have something I’d like to share that feels a little vulnerable if you’re ok with receiving? I have endometriosis which means PIV isn’t always that pleasurable for me, and it feels important to mention this in case it’s a deal-breaker for you if we do decide to meet up and explore together.”
Finally, if you’re already sexting and penetrative sex comes up and feels a bit weird for you, you can always take a pause for a moment and change the scene:
“Can I pause for a moment? Penetrative sex doesn’t always feel good for me so I’d love to try something different. How about you X while I Y?”
If you’re in the middle of sexting then you don’t need to go into detail right there and then. You can always request changing the focus of your discussion and coming back to the topic later to explain why.
Of course there will be people for whom this is a deal-breaker, for whom penetrative sex is a big part of how they want to express their sexuality. But filtering out these people is another benefit of having this conversation early – after all, if sex is important to you in relationships, then it’s also important to prioritise sexual compatibility.
What you might have noticed about all of this is the necessary first step of knowing what you do enjoy. Experiencing pain during penetrative sex may make it difficult to identify the things that do feel good, because we’re socialised to believe that the only ‘real’ sex is penis-in-vagina. So it’s really vital to get to know your own body, and what brings you pleasure, so that you can offer these as alternatives – and teach the folks you date how you do like to play, touch, and connect. If you find yourself often getting stuck in your head during sex, learning how to come back to your body can be really helpful here, too.
You can always go at your own pace. If anything about your diagnosis will impact someone you’re dating – needing more flexibility around timing and making plans, for example – this is something you do need to communicate so that they know what to expect. It’s still up to you whether you tell them the reason for this, though, and you don’t have to disclose until you feel safe to.
It makes sense to fear that someone will be mad if you don’t tell them straight away, especially if it means you’re not available for the kind of sex they want to have with you. But even if this happens, all they have done is shown you that they are not capable of being in any kind of relationship with you.
Being rejected on occasion is an inevitable part of dating for all of us, but if you live with endometriosis then it may be harder not to internalise a message of being dysfunctional and undesirable. Because PIV is seen as the ‘norm’ in heterosexual relationships, disclosing that you’re not available for that may bring out entitlement or feelings of having been betrayed in the other person.
The first thing to know is that you are never responsible for another person’s feelings, you don’t owe anyone sex, and you never have to tolerate being insulted or belittled for expressing your needs.
The second thing to know is that you can learn how to feel more secure and resourced so that rejection doesn’t feel like a big deal. This may begin with acknowledging that the ways you do want to express your sexuality will not be compatible with people who place a high priority on PIV. And that’s okay! Focusing on finding people who are up for getting creative in how you play and explore together is an important part of this process.
It may also be interesting to explore the attitudes you have towards your own body and your endometriosis: are you fully accepting of yourself, your limits and your gifts? Or are there parts of yourself that you reject?
Often, when we are fully accepting of ourselves, rejection feels less harsh. When we can give ourselves unconditional love and care, by speaking our needs and honouring our boundaries, then it matters less what others think of us. We can do the work of accepting ourselves on our own without relying on validation from others, so while rejection may still sting, it doesn’t completely shake your self-worth.
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I offer tools, resources, and coaching for the curious and ready: folks who are longing for deeper connection, trust, and flow in their relationships.
Instead of making anxiety a problem that needs to be fixed, we can learn to work with it rather than against it, transforming vulnerable places into deeper presence and connection. I’ve put together ten simple tools you can use in your relationships to do just that.Grab your Ten Embodied Tools for Reconnection PDF
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