The Chronic Series: ‘Sex and the Sick Girl’
I do many private sessions with people who experience chronic pain, whether it is pelvic, digestive, or body, I work with them to use pleasure as a tool in the process of management and recovery.
I’m so excited to launch a blog series, The Chronic Series, a series of featured writers speaking first-hand about their often misunderstood experiences with pain and pleasure.
I’m honoured to introduce Devon as the first writer in the series. Devon is a writer from Toronto, and is currently studying journalism while working on written women’s health blogs. She is passionate about breaking down the stigma surround vaginas, chronic pain, and pleasure. This is her first foray into writing about sex and pleasure. Thank you Devon for your using your skills and sharing your experience with such openness and using your pain as an opportunity to teach others.
I have suffered with chronic pain my entire adult life. Therefore, I have never had a sexual experience where I wasn’t also dealing with chronic pain. So, let’s talk about that.
When I was 16 I started having random bursts of shooting pain in my pelvis that would leave me crying and passing out more often than not. As the months went on those random bursts became constant pain. My pelvis, abdomen, and lower back hurt all of the time. It hurt to walk, to sit, to lay down, and to go to the bathroom. It hurt when I danced, laughed, and went to school. The pain invaded every minute of my day, including waking me up from my sleep every night. I researched my symptoms via Google, like every good millennial, and the term endometriosis came up.
When I told my family doctor about the pain I thought might be endometriosis, he told me that it was unlikely as I was only 16, far younger than most women with endometriosis, so he referred me to a gynaecologist. When I spoke to my gynaecologist, they also then told me I was too young to have endometriosis, and wouldn’t operate unless sexual intercourse became painful. I wasn’t sexually active at the time, so they suggested I try Advil. Can you imagine thinking that I had seen both a GP and a gynaecologist without trying Advil? Can you imagine believing that someone who had been throwing up, fainting, missing school and work for months hadn’t thought to try Advil. Yeah, me either.
I saw 17 different gynaecologists from the age of 16 to 18. My pain just got more and more intense during that time. I would curl up in the fetal position in the shower and sob. I told my mum multiple times that I wanted to die, and couldn’t live with this pain anymore. I was put on different birth control pills, hormonal treatments, and all kinds of remedies for what my doctor had dubbed my “bad periods”. Shock, horror, nothing worked.
When I was 18 I told my gynaecologist I was having a lot of pain with sex, and he told me that that must be horrible for my boyfriend. I responded by telling him that I was actually seeing a woman. His response was that I shouldn’t worry about it because having sex with another woman I wasn’t having ‘real sex’ anyways.
Now, by his theory I’ve never had real sex, and if having this elusive “real sex” involves penetrative sex with someone with a penis, he can keep it to himself. But not only is this rhetoric ignorant and homophobic, the fact that I was having sex with a woman wasn’t why I was at the doctor, I was there because I was in pain. I eventually lied to a doctor and told him that I’d had sex with a man and it was very painful for me and uncomfortable for my partner before I would be taken seriously. My gynaecologist operated two weeks later, and after two and a half years of lying to, arguing with, and firing doctors, I was diagnosed. I have stage three endometriosis.
Endometriosis is when the lining of the uterus is found elsewhere in the body, such as the outside of the fallopian tubes, uterus, ovaries, and other organs. It can spread as far as the lungs and sinuses. It causes, among other things, chronic pain, nausea, fatigue, insomnia, irregular periods, heavy periods, organ damage, and painful sex. Pretty disturbing I had never heard of this condition in health class, or from my mother, grandmother, or sister. 8 of the 17 doctors I had seen had never heard of it. Endometriosis affects 176 million people across the world, that’s 1 in 10.
A year later I was diagnosed with adenomyosis. This disease happens when the cells found in the uterine lining permeates the walls and muscle of the uterus. It causes constant pain, irregular periods, painful sex, and conception, pregnancy, and birth complications. I’m off to a great start, I know. Both conditions left me with a diagnosis of chronic pain, infertility, and possibly chronically painful sex, all before the age of 20. Endometriosis and adenomyosis also play a huge affect on the mental health of people diagnosed with them. When you consider chronic pain, chronic fatigue, infertility, weight gain, and nausea are all associates of both diseases, it’s not hard to believe that 1 in 4 people diagnosed with endometriosis will attempt or die by suicide in their lifetime.
Being diagnosed with a condition that affects your sex life is confusing. People are sorry for your luck, but they have no advice to offer. You may feel awkward explaining it to people, and a lot of the time they feel uncomfortable offering comforting words, which you don’t really want to hear anyway. But it doesn’t necessarily kill your libido. Like many other people who menstruate, your libido is fluctuates with your menstrual cycle. But how do you navigate this? How do you learn to come into your sexuality when your sexual organs are working against you? You work with them.
Pleasure means different things to different people, and is generally a combination of mental and physical stimulation of joy. I’ve found that, when managing chronic pain it is essential to find things that bring you joy.
I spend at least half an hour every week soaking in a bubble bath with candles and music playing in the bathroom because it soothes my pain and my mind.
I pick up the latest edition of Cosmopolitan every month just because it makes me happy. I wear underwear that make me feel sexy, and red lipstick because it makes me feel powerful. I’ve recently started to cut ties with people and activities that make me unhappy. I’ve found that my pain gets worse with vigorous and intensive exercise, but I walk at least two kilometres a day every day. I meditate every night before bed, and I often lay flat on my bed or the floor and stretch all of my muscles. I like to feel every inch of my body relax. Relaxation, sensuality, power, happiness, and owning my presence in my body (no matter how sick it is) bring me pleasure.
To me pleasure is the perfect nights sleep with the window open and three blankets piled on top of me. It’s hearing my nieces and nephews call me auntie, and having them crawl into my lap and cuddle up to me before falling asleep in my arms. Pleasure is the perfect cup of tea and a cherry almond danish. It’s that precise moment when you exhale and feel all the weight lift from your shoulders. It’s taking your shoes off and wiggling your toes. It’s kissing for hours and holding hands while you fall asleep. to me pleasure is being in love with someone who looks at you like you are a miracle, and you believing that you are.