The sex lives of people with endo

Sealed Lips is Mashable’s series on pelvic pain, an experience rarely discussed but shockingly common.

Tumbling into bed after a rare date night out with my partner should feel like an antidote to the monotony of days spent lying on the sofa in near constant pain. Instead, it almost always ends in tears. 

What’s valued as the epitome of pleasure, orgasms seem to trigger a flare up in my already sore body. As the clothes ripped off in haste lie scattered on the apartment floor, half drunk wine glasses sit stained by the sink, I lie awake for hours, writhing in pain, mourning the loss of another part of myself taken over by disease. Chronic illnesses, including endometriosis, rule my life. They dictate when I can enjoy myself and when I cannot. They’ve already taken away a lot from me — spontaneity, delicious meals, nights out, trips away, and yes, sex too.

Sex seems to be ubiquitous with pleasure. In the age of sex positivity, women and non binary folks are reasserting sexual desire as something they feel empowered about. So, where does that leave the people who want to have good sex but can’t? Those that have willing partners but still find pleasure physically hard to find?

I had undiagnosed pelvic pain for over 10 years before receiving an endometriosis diagnosis in January 2021. This was followed by invasive testing and abdominal surgery, with even more operations on the horizon. Two thirds of people who live with endo experience sexual dysfunction as a result, but there is a societal resistance to discussing sex when it intersects with chronic pain and an assumption those of us who are frequently unwell are not participating in acts of pleasure.   

Endometriosis is a chronic health condition affecting 1.5 million people in the UK, 6.5 million in the U.S. and WHO estimates 190 million women of ‘reproductive age’ are affected globally. Symptoms vary, and it occurs throughout the body, where cells similar to the lining of the uterus grow outside of it, often in the bowel, stomach, and pelvic areas. Despite how many people live with endometriosis, we do not know what causes it and doctors cannot find a cure. I have been cut open once already this year and less than six months later my pain is returning to pre-op levels. The only way to discover how many more lesions have grown is to be cut open again, and again, routinely, for the rest of my life.

For a disease that affects so many, it is chronically underdiagnosed and the average wait time for an official diagnosis after the onset of symptoms is eight years. Even with diagnosis, those living with the illness are often ignored, with some doctors still claiming pregnancy or birth control can be used as viable treatment options. The disease lacks research funding, like many other types of dyspareunia — the medical term for sexual pain — that affect people with vaginas, such as vaginismus and vulvodynia. Erectile dysfunction, affecting people with penises, has 1954 clinical trials currently published on PubMed, compared to 393 for dyspareunia. It is the historic disregard of female pain, under the assumption we will grin and bear it, that results in ongoing medical misogyny.

Tegan, a young non binary person who has lived with dyspareunia since they began having sex, says they feel frustrated with the lack of control they have, that their body won’t do what everyone else is doing. “You’re supposed to enjoy it. It hurts and I bleed every time,” they tell me. “I feel angry at my body, like something is wrong with me.” This idea of ‘normativity’ sees painful sex often not discussed. Instead, it is often a burden we carry alone, secrecy compounding feelings of shame. Journalist Lucia Osborne Crowley’s recent book, My Body Keeps Your Secrets, documents experiences of sexual violence that often have consequences in later intimate relationships, writing that “the most important gatekeeper of shame is our determination to not give people the words they need to speak freely about themselves.”  

For Ellie, it was painful sex that alerted her to discovering her endo — a common experience for those with it. She’s been with her partner throughout the diagnostic process and subsequent medical intervention. “My sex life was the main thing that was disrupted,” she says. The symptoms of the disease are varied, affecting our digestive systems, bowel movements, and hormonal cycles, but because Ellie, like many others, had the mirena coil — a type of intrauterine device — fitted, she said she wasn’t experiencing painful periods, often a hallmark symptom of endometriosis.  

Although I had severe pain prior to having a consistent sex life, it was my own bleeding during sex with a long term partner that finally convinced my GP to refer me to a specialist, uncovering my extensive endometriosis. It makes me wonder: Why was my pain not taken more seriously before I started bleeding during sex? 

I questioned Ness Cooper, a sexologist, on my own intimate woe. It’s something I thought I was entirely alone in until connecting with other endo sufferers — is it really possible that orgasming is triggering my endo flares? She demystified the experience I had been afraid to ask my doctor about. “There is scar tissue from the uterus’ lining in the pelvis and even vagina, vaginal contractions from orgasm could be the painful cause,” Cooper explains. “If the individual is experiencing muscle spasm, they may find that orgasm can trigger the spasm to set back in after orgasm and struggle to continue with penetration for a while afterwards.”

Ness also suggests a number of practical steps partners can try to make penetration enjoyable for all involved. She invites the use of foreplay in the form of massage: “a warm sensual massage with a body safe massage candle can help relax muscles that may be prone to spasms.” She also suggests laying on top of a heated pad or electric blanket, to provide some warmth and relief during sex.

The idea that penetrative (or penis in vagina) sex is the only legitimate way to have sex is rooted in heteronormativity. Megan, who has been in a long term relationship since her endometriosis diagnosis, praises her partner, saying, “Penetration was off the table for a while and my partner understood. We spent time trying to work on non-penetrative intimacy.” However, old habits die hard, and many people living with endo and struggling to enjoy penetrative sex are left feeling sexually deficient. Although there are plenty of other ways to find pleasure with a partner beyond penis in vagina sex, Tegan says, “Sometimes as someone with a vagina, I crave that intimacy of having someone inside me, which just isn’t possible at the moment.”

I asked the endo community what they’ve found useful through trial and error. Megan suggests a penetration bumper like the OhNut. The device works as a physical barrier that is worn on the penis, to prevent it inserting too deep into the vagina, which combats the deep pain associated with endo-related dyspareunia. It is made from a soft pliable polymer and comes as a stack of four rings that can be customised to suit the length you desire. Megan says it’s the best tool they found to make PV sex enjoyable, as it avoids hurting herself but allows her partner to enjoy a simulation of those deep sensations. Meanwhile, Tegan says getting comfortable using non-pentrative toys with new partner has helped them enjoy sex again, describing a clitoral stimulator toy as the best thing they’ve discovered. 

If you’re reading this and have a pain free pleasurable sex life, I’m stoked for you. Those of you who thought you were alone, whether you have endometriosis or any other pain condition, I want you all to know there is a community of us trying to make sex fun and talking about it a lot more too. This isn’t the end of that conversation.