My Reproductive Organs Hate Me
Written by The Endo Monologues
Illustration by Chloe Turner
There is an assumption that sex education prepares you for hitting puberty and all the changes that come with it. Don’t get me wrong, my sex education gave me a basic overview of how reproductive organs work and what changes to expect but it didn’t prepare me for what was ‘normal’ and what wasn’t. It didn’t prepare me for the fact that I’d spend years thinking my abnormal was normal because I didn’t know otherwise.
And it’s much bigger than that, generations bigger in fact. I was eleven when my periods started. It wasn’t a surprise as it was the age that my mum, my grandmother and my aunt started theirs. It also wasn’t surprising when my periods became increasingly heavier, lasting for weeks at a time and leaving me in debilitating pain. Why? Because the women in my family had all experienced the same. It was normal for us; it was to be expected. None of us thought to question that this wasn’t how periods were supposed to be because we didn’t know any different.
Three years later and things had progressively gotten worse. Within an hour I would soak through both my tampon and sanitary towel, I would miss a week off of school every month, I could barely move due to the pain. I remember being so upset because at fourteen I couldn’t fathom the thought of talking to a male doctor about a medical problem let alone anything to do with my uterus. But, desperate for help and because I wouldn’t dare (or even think to) challenge the advice of a doctor, I accepted his advice to go on the contraceptive pill. Two years later I was diagnosed with hypothyroidism and told that was what was causing my period issues and therefore it was a problem solved.
I stayed on the pill for just over a decade. As far as I knew, it helped regulate my cycle and suppressed my symptoms. However, in my early twenties, the symptoms slowly started to creep back, bringing new ones along with them.
By the time I was twenty-four I was back to soaking through tampons and pads whenever I had my period. It hurt to have sex, it hurt to stand up for too long, it hurt to get out of bed, it hurt to go to the toilet. My cycle brought with it never-ending stabbing pains, waves of nausea and unpredictable bloating. Enough was enough when I started to get a non-stop feeling of pins and needles in my pelvic area and when sex became too painful to tolerate.
So, in September 2015 I went back to the doctors for help. After explaining my doctor said – and I quote – ‘a lot of women who are promiscuous have issues with their periods’. This doctor knew nothing of my sexual history, I have never been promiscuous and yet this man thought it okay to not only assume something about me but also to be completely unprofessional about it. He booked me to be tested for STDs despite saying I had been tested weeks prior and wouldn’t hear otherwise.
Unsurprisingly my results came back clear and another male doctor rang me to tell me that I had tested positive for thrush. No biggie, I would deal with that, but I asked what would now happen about my pelvic pain. The doctor had no idea that this was why I was being tested but referred me for a trans-vaginal ultrasound. This came and went and on Christmas Eve 2015, the same doctor who accused me of being promiscuous left me a voicemail to say that my scan had come back as normal; no polyps or cysts.
Fast forward to March 2016, back to the doctors for an unrelated issue and I decided to ask the doctor (another different one) about my results as nobody had taken the time to go through them with me. In her words, I had a ‘thickening of the walls of my uterus’ and when I asked if it would affect my fertility, she said no. Fair enough. I’ll admit that this satisfied my need for answers and I let it be, thinking that the pain and awful periods were just something I had to deal with.
June 2016. This is where shit hit the fan and I’ll say that I am forever thankful to the nurse who kickstarted the whole process. I had made an appointment to get my contraceptive pill re-prescribed and my nurse turned around very matter-of-factly and asked if I was on it because of my suspected endometriosis.
I replay this moment in my mind frequently.
After processing the question, I replied that I had no idea what she was talking about and then sat in utter disbelief as she explained that my doctor had suspected I had endometriosis after my ultrasound results back in 2015. For over 6 months, 6 months, where I had allowed myself to be convinced that it was all in my head, it wasn’t that bad and that things were okay. Long story short, I took action against my doctor and as far as I know, he’s no longer practicing medicine.
The process to being diagnosed was speedy after that, I was immediately referred to an amazing gynaecologist who is a recognised specialist in dealing with endometriosis and I had my first laparoscopy in August 2016. She found endometriosis growing on my bladder, bowels, ovaries, uterus and on my Douglas pouch and I had the Mirena IUD inserted at the same time. Once I got over the shock of how serious it actually had been and processed my anger I felt better, better than I had in years. I felt so validated in the fact that I knew what I was experiencing wasn’t normal, that there was something seriously wrong with my body.
Fast forward to 2020 and I’m slowly back to square one but I’m managing the regrowth of my endometriosis much better. Whilst having the Mirena IUD has more or less stopped my periods completely, I still have to deal with the day to day pain and flares that come with endometriosis but there are ways to manage the pain. I always have what I call my ‘emergency endo kit’ with me; it contains over the counter painkillers, heat patches and muscle rub in case of a flare. At home, I tend to reach for a hot water bottle and in the last year have found that using CBD significantly reduces my pain; I take it daily as a tincture and vape it if it’s a really bad flare.
When it comes to sex, having endometriosis makes it tricky. For me, penetrative sex is often a no-go as it causes severe shooting pains and makes me feel nauseous, but I have found ways to overcome it. Regardless of your relationship or sexual status, a huge part of having ‘successful’ sex with endometriosis is communication. So many times before my first operation I would just deal with the fact that sex would be painful because I felt guilty and wanted to please the person that I was with. Which when thinking back is absolutely ridiculous because my pleasure is just as important too.
My endo diagnosis has made me realise that having sex doesn’t just have to be about penetration or about achieving an orgasm. There are so many ways to experience pleasure despite having endometriosis; masturbation, mutual masturbation, using toys… The list is endless. What’s important is that you speak up about what’s working for you and what isn’t. Communicate, because ultimately, you’re the one who is missing out. I’ll happily admit that I’m selfish about my sexual needs, I know what my body likes, I know what gets me going. I advocate for my sexual pleasure and I encourage you to do the same.
In fact, I think that’s the biggest message I’d like you to take away from this: advocate for yourself and your body.
If I had better reproductive education, I would have challenged my doctors, I would have asked for second, even third opinions. Doctors can be wrong, I have to say that after my experience I’m not surprised it takes an average of 7.5 years to be diagnosed with endometriosis and I never, ever want anyone to have to go through what I went through. You are 100 percent entitled to be heard and to be listened to, to challenge opinions and to request to see a specialist. Please trust your instincts. If something feels wrong, then I urge you to talk about it; no-one knows your body better than you do.
The Endo Monologues is a satirical diary all about dealing with the writer’s reproductive issues from the perspective of her uterus. Through her Instagram and blog, she hopes to provide a place to laugh, cry, curse, educate and raise awareness about endometriosis, adenomyosis, vaginismus and vulvodynia.
The following toys are recommended for sensitivities and pain: