Nikita Aashi Chadha

The Double-Edged Sword of Pain vs Pleasure: What Having Sex Is Like With Endometriosis and Adenomyosis

by Nikita Aashi Chadha

Content warnings: mentions and discussions of sex, sexuality, pain, race, gender, medical gaslighting

Please note that I wrote this piece when I identified as a woman. That is no longer the case. My previous approach to understanding Endometriosis was very much framed this way, but let me be clear: You do not need to be a woman to live with Endometriosis and the categorisation of the illness within “women’s health” is inaccurate, and minimising (to say the least).

I’ve always been a sexual person – sex has been a big part of my life, and even my personality, for as long as I can remember. My sex drive is extremely high, which is less fun than it sounds. I’m a woman* and have spent most of my life conditioned to believe that my pleasure is irrelevant and not needed within the bedroom. I’ve been taught that it comes second to my male partner. A lot of ex-boyfriends have hated on me for having the higher libido in the relationship, and there’s always been the insinuation that I should feel ashamed or embarrassed about expressing myself physically and sexually (sometimes this has gone beyond insinuation and been outright shaming, too).

If you’d asked me last year what my sexual orientation was, I would have said straight – it’s what I’ve always said, even though it’s not always described how I actually feel. I can proudly say now that I’m bisexual, and that I’ve always been. I never felt like I could say the words out loud without losing friends, facing shame from family members, or being even more oversexualised by society than I already am. Statistically, same-sex couples report higher levels of orgasm and sexual satisfaction than heterosexual couples. This is generally explained by fewer social and sexual scripts amongst same-sex couples (the unwritten rules and codes that impact how we act with one another based on what is shown to us through society and what is reinforced through discourse and the media). There is also more open communication and turn-taking. I wish I could say the same things about my hetero interactions. Don’t get me wrong, there are exceptions to the rule. But in my experience, most men have not taken turns or cared about my pleasure at all.

I know that I’ve used sex to fill holes in my life or plaster over problems with my identity, self-esteem and body image. Especially when thinking about my position in the world, race and belonging. I don’t fit into eurocentric standards of beauty, which say I have to be thin, white, blonde-haired and blue-eyed to be considered beautiful, or to be considered human. I’ve only started to see myself as beautiful within the last year because of these restrictions around what ‘beauty’ is. For reference, I’m 28, and I’ll be 29 in two months. 

Melanated women aren’t treated in the same ways that white women are. White women are the ‘ideal’, the ‘standard’, and we are the ‘other’, and usually incredibly oversexualised. If we look at the porn industry, where melanated women are expected to outperform their white counterparts, or are labelled as ‘animalistic’ and ‘wild.’ Until a few years ago (and I mean within the last 1-3 years), searching ‘Black Girls’ on Google would return pornographic images and websites. ‘Indian Girls’ would incur similar results, but this wasn’t the case if you searched ‘white girls’. If anyone is looking to learn more about this, I would recommend Algorithms of Oppression: How Search Engines Reinforce Racism by Safiya Umoja Noble. 

I believe this is a direct result of colonialism. Melanated women were seen as ‘savage’, less than human, and usually blamed for seducing colonial white men, just by existing and looking ‘exotic’. Being fetishised because of your skin colour is a real issue, but we must also acknowledge that we aren’t all subjected to the same narratives, and that this looks different for every racial group. The way it has shown up for me has also differed across the years that I’ve dated and been sexually active. It can look as small as the assumption that I must know about tantric sex, or Kama Sutra, and it can also include sexual expectations of being ‘wild’ and ‘freaky’. Sometimes, people reveal these attitudes very quickly, and they are swiftly blocked. Other times, it isn’t apparent until we are actually having sex, which is demeaning and awkward. These are just examples, but to continually bear being treated differently because of the colour of your skin is not something that should be taken lightly.

My attitude towards sex has changed in my later, more recent years, especially since being diagnosed with Endometriosis and Adenomyosis. Pain during sex, or after sex, is one of the most common symptoms of both conditions. I’ve suffered from sexual pain for many, many years, but I didn’t know that it wasn’t supposed to hurt. I thought it was just my body and the consequence of being ‘very tight’ (which is my overactive pelvic floor). Sometimes, during sex, the pain would feel like sharp, stabbing pains within my cervix. Other times, there would be residual pain, for anywhere from 3 days to over a week, where I struggled to sit, stand, go to the bathroom, or have a shower. Sometimes, there was no pain at all. There was no rhyme or reason to it, which added substantially to my distress and anxiety. I have mentioned painful sex to several doctors, including when I was trying to get diagnosed with Endometriosis, but they’ve always said it was normal, that everyone can experience pain during sex and that I shouldn’t pay it any mind. I still remember describing a specific incident to a doctor, back in 2018, where it was so painful that I screamed and cried during and then locked myself in the bathroom afterwards. It still pains me to this day that whenever I have mentioned pain, sexual or related to my period, I’ve been told to just grin and bear it.

That same year, in 2018, when I was finally diagnosed with Endometriosis and ended that relationship, I stopped having regular sex. It’s like that part of me just died. During the laparoscopy, I had the Mirenal coil inserted, and that just seemed to add to my problems. As well as the standard pelvic, uterus, vaginal and lower back pain, the coil brought a brand new symptom with it: pain during orgasm (thanks life). These were during solo sessions and didn’t involve anyone else or penetration. I brought it up to the gynaecologist, who said there was nothing to worry about, but she never mentioned that specific types of pain are common amongst people who have the conditions that I do. After some tests, I was diagnosed with Adenomyosis 6 months later. I had so many questions! Could this new diagnosis explain the new pains I was experiencing? The vaginal and vulval heaviness, tenderness, palpitations and pain that appeared out of nowhere, post-surgery? Surprise surprise, when trying to discuss these with medical professionals, the conversation was barely acknowledged.

I turned to the Endometriosis community instead, to people who live with the same things I do – and I found some answers. Don’t get me wrong, the community is not perfect and is rife with the same social hierarchies and inequalities that plague society. Even so, I do believe that people who live with conditions know more about our bodies than professionals ever will, and there is a level of love, grace and empathy that isn’t present amongst specialists. I know now that perhaps the pain was caused by the coil itself, as it disappeared upon its removal. The doctor who removed it told me that it was tucked up high in one of the corners of my uterus. It also could be simply because of the pelvic floor dysfunction that occurs with Endometriosis and Adenomyosis due to the chronic pain, stress and inflammation. Someone in the Endo community also shared the following with me: When you have an orgasm, your pelvic floor and uterine muscles are activated, and contract and retract. Like with any other injury, if there is already dysfunction of the pelvic floor or nearby areas, there could be additional inflammation when those areas are activated, as they are all interconnected.

I’ve only had sex a few times since being diagnosed with these conditions. Nothing like my younger self at all. My experiences of chronic pain, generally but specifically during sex, have really stayed with me. I know it will be painful, and I’ve actively avoided it as a consequence. My body seems to shut down, to tense up involuntarily. The idea of having casual sex with someone I don’t know or trust is no longer on my radar. When I have a flare or experience pain related to my conditions, I don’t want to be touched, especially not sexually, by another person. There is also an element here of wanting to be in control and to feel safe, as I’m fine to explore my sexuality myself through masturbation. Sexual dysfunction is an isolating experience; I know it has impacted my sense of identity and how I seek validation. I do feel more at peace when I’m alone. When there is no one else’s input or feelings but mine. I don’t have to mask pain, or fear judgement or rejection, shame, or stigma. It’s been an adjustment, for sure, and it’s changed my life in profound ways. I used to find sex comforting, validating, and I saw my sexuality as a massive part of my personality and identity. Sometimes, I am grateful that my illnesses have prompted me to look at my sexuality and to understand that it has been performative, but at other times, I’m filled with a deep sense of grief. It feels like all I’ve done over the last few years is lose my ability to do things that I used to enjoy, and I struggle to recognise myself.

With all of that being said, I do think there are key factors to consider if you’re like me and you have conditions that lead to painful sexual experiences, but you still want to have sex.

If you’re sleeping with someone, or thinking about sleeping with someone who doesn’t respect your boundaries or care about your pleasure, may I suggest throwing the person in the bin and starting again 😀

One last thing: We may meet some people over the course of our lives who do prioritise our sexual pleasure, and we should always be striving to be with people who are like this, but we deserve to know and prioritise these things for ourselves, too. <3