Tessa Caramia
10.10.24
Education
Endo and pleasure
Sexologist Tessa Caramia explains how endometriosis isn't the end of sexual joy and pleasure
What is endo?
Around 1 in 9 Australians with a uterus live with endometriosis, a condition where cells similar to the lining of the uterus grow in other parts of the body. These cells excrete fluid during the menstrual cycle, causing more cell growth, inflammation, adhesions between tissues, and pain.
Endometriosis, or endo for short, is underdiagnosed due to a lack of awareness, leading to people with the disease waiting an average of six years for a diagnosis. It’s associated with a suite of other symptoms that are still being studied, including brain fog, fatigue, poor mental health, migraines, and neurodivergence, but symptoms vary.
Some researchers believe endo is caused by retroactive menstruation, which is when period blood flows into the abdominal cavity instead of out through the vagina. Others suggest that the research is inconclusive. There’s no cure for endo, but people with the condition can access medical or surgical treatments to help manage their symptoms.
Endo can make sex painful, and without much certainty in the medical sphere about the condition, many look to the experiences of people who live with the condition to help them navigate getting to know their body again.
'Without much certainty in the medical sphere, many look to the experiences of people who live with the condition'
Endo, sex and pleasure
Endometriosis can impact people’s menstrual cycle, including cycle length and time between bleeds. While many symptoms exist as constants—imagine a radio constantly playing in the background—they can occur in what the endo community calls’ flare-ups’. These are moments when symptoms such as pain or fatigue become so severe that they impact a person’s ability to engage in day-to-day life, sometimes resulting in a trip to the Emergency Department.
Endometriosis can impact people’s menstrual cycle, including cycle length and time between bleeds. While many symptoms exist as constants—imagine a radio constantly playing in the background—they can occur in what the endo community calls’ flare-ups’. These are moments when symptoms such as pain or fatigue become so severe that they impact a person’s ability to engage in day-to-day life, sometimes resulting in a trip to the Emergency Department.
Managing this constant ‘radio chatter’ tends to take over the day’s frequency and can be overwhelming if you are forced to listen to it daily. It can gradually spoil every aspect of your life until you don’t have any reprieve.
As an example, even going to the toilet can become a strain since endo lesions around the bladder and bowel can cause pain. This painful bloating might mean needing to wear loose clothing, which can harm body image and self-esteem. For others, endo might mean time off work, cancelled social plans, or watching your finances deplete due to medical expenses, which can chip away at your sense of autonomy, community, and security.
Endo can destabilise your relationship with yourself by making even the most mundane parts of being alive, like choosing clothes in the morning or a quick post-sex bathroom run, feel like a fight-or-flight fight for survival.
Endo can destabilise your relationship with yourself by making even the most mundane parts of being alive, like choosing clothes in the morning or a quick post-sex bathroom run, feel like a fight-or-flight fight for survival.
Such experiences can deplete your relationships with others by disengaging them from the people and places you love. Frequent last-minute social cancellations due to flare-ups can lead to fewer invitations and reduced opportunities to stay connected and supported. Eventually, endo can seize your ability to be spontaneous.
Uncertainty around how your body might react to a new sexual experience or partner, or knowing you don’t have your pain medication on hand, can mean missing out on those fleeting moments of magic that can make life exciting and erotic. While many sexual partners are kind and well-intentioned, sometimes the potential of pain outweighs the joy of thrill-seeking.
But it doesn’t have to be that way—this isn’t the end of the story.
Uncertainty around how your body might react to a new sexual experience or partner, or knowing you don’t have your pain medication on hand, can mean missing out on those fleeting moments of magic that can make life exciting and erotic. While many sexual partners are kind and well-intentioned, sometimes the potential of pain outweighs the joy of thrill-seeking.
But it doesn’t have to be that way—this isn’t the end of the story.
'Sometimes the potential pain outweighs the joy of thrill-seeking but this isn’t the end of the story'
Endo and sexual scripts
In the biz, we refer to how people relate to their sexuality as a ‘sexual script’. This can be a helpful tool for people to make sense of the stories they’ve told themselves about what sex and pleasure mean for them. For example, someone with endo may have a sexual script along the lines of ‘I can only have sex with someone familiar because I need to be able to trust them if I have a flare-up’ or ‘If we have penetrative sex, it’s going to hurt’.
These scripts tell the story of a person’s abilities, experiences, and interests, and they can feel static. However, many people who live with chronic illness and disability, as well as victim-survivors of sexual trauma, know this is not the case. Likewise, living with endo can feel like the condition has taken control of the narrative. Still, you can take over the writing of your sexual script.
Sometimes, the main character needs to write themselves, and their pleasure, in.
The first step is to take time and let your feelings breathe. The second is to open yourself to the idea that sex as you’ve known it may no longer work. If that feels impossible, return to step one or consider talking to a professional for support. Once you start from a blank slate, you can explore your body with fresh eyes and better appreciate its needs around pain and flare-ups. This is your olive branch to yourself.
Often, it can be helpful to start on one’s own. Schedule some time for a luxurious bath, a walk in the park, some music in candlelight, a nourishing (or comforting) meal, reading a book—whatever it is that brings your body into a state of calm in preparation for what’s to come (hint: it might be you).
The next step is to gently reacquaint yourself and your body with erotic pleasure and trust that it will not be pushed into pain. You might do hip-opening yoga poses to a sexy playlist, massage yourself with a favourite body oil, or gently explore your vagina with your hands or a preferred toy.
The point of these exercises is to follow your pleasure without chasing orgasm. Put on a timer (30 minutes can be a good start) and know there’s no pressure. Start small and build up towards trying new things over a few weeks.
The first step is to take time and let your feelings breathe. The second is to open yourself to the idea that sex as you’ve known it may no longer work. If that feels impossible, return to step one or consider talking to a professional for support. Once you start from a blank slate, you can explore your body with fresh eyes and better appreciate its needs around pain and flare-ups. This is your olive branch to yourself.
Often, it can be helpful to start on one’s own. Schedule some time for a luxurious bath, a walk in the park, some music in candlelight, a nourishing (or comforting) meal, reading a book—whatever it is that brings your body into a state of calm in preparation for what’s to come (hint: it might be you).
The next step is to gently reacquaint yourself and your body with erotic pleasure and trust that it will not be pushed into pain. You might do hip-opening yoga poses to a sexy playlist, massage yourself with a favourite body oil, or gently explore your vagina with your hands or a preferred toy.
The point of these exercises is to follow your pleasure without chasing orgasm. Put on a timer (30 minutes can be a good start) and know there’s no pressure. Start small and build up towards trying new things over a few weeks.
'The first step is to take time and let your feelings breathe'
Writing your pleasure
It’s important to acknowledge the feelings that might arise during this time: the positive, sad, and complicated. Maybe you journal, maybe you talk it over with a loved one. It might look like curling up with the cat and gazing at the moon. Recognising any feelings or reflections is key to rewriting your sexual script and honouring that olive branch.
From here, it’s simple: return to life, rinse, and repeat.
From here, it’s simple: return to life, rinse, and repeat.
Tessa (she/they) is a queer Italian-Australian sexologist working on unceded Wurundjeri Country. She runs educational workshops on queer inclusive sexual health for communities and young people. They are passionate about lifting the veil on conversations on pelvic pain for people of all bodies.