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Writer's pictureSarah Foley

TSS-002 ~ being sexy and having sex with endometriosis and polycystic ovarian syndrome

content warning: small amount of menstrual blood in photos.


This post is for the divine women around me whose bodies are in pain.

I didn’t mean to make my first *real* post about some of the negative, tricky bits of sex but truthfully that’s what really inspired me to start this blog. This year has been a BIG year of health revelations for me and lots of the women I know. I was diagnosed with Polycystic Ovarian Syndrome (PCOS) and Endometriosis.

PCOS felt like a big win- I felt like I was finally getting some respect from medical professionals after years of not being taken seriously. As a teenager, I’d suspected that I had PCOS, having done a heap of research about the bits of my body during puberty that I did.not.like. ‘Why do I get dark hairs on my nipples?’ ‘Why can’t I stop getting pimples?’ and my most insecure obsession of all, ‘Why do I have hair between my boobs?’ These were all pretty standard signs of PCOS, alongside horrendous periods that came every two weeks and made me into a teary diva.

At this point in my terrifying spiral of googling, I went to my doctor and he suggested I get laser hair removal and take Roaccutane, an incredibly strong drug to treat acne. My teenage body was being treated with ‘fixes’ to remove the symptoms that were only going to be temporarily masked by these treatments. The doctors didn’t give me any resources or literature about what was going on in my body- which was very normal for a teenage girl- and this brought on a lot of insecurity and self-hatred that lasted many years. I should really have been offered a pelvic ultrasound, but it was another seven years before my body was taken seriously. I was overwhelmingly insecure about the amount of hair on my body, but still desperate to have sex ASAP. I didn’t know how to have the body I had, and make boys want to fuck me. I thought about sex constantly, surrounding myself with everything but the physical act: I read about sex, fantasised about sex, fixated on sex and the million ways I imagined it happening. I had a real wee fixation as a teenager (sort of still here oops) after thinking as a kid that wee was semen, and fantasised obsessively about the day someone would wee on my hairless body before fucking me violently because they were SO in to me they couldn’t control themselves. Feminism came a lot later and questioned my ideas of sex.

What I learnt from all the media I was consuming was that the amount of hair that I had on my body, would definitely be a turn off to prospective sexual partners. I concluded that it had to be removed if I ever wanted to have sex. I remember when it came around to the time when I was actually going to be having sex, my friends told me to not shave all my pubic hair so my boyfriend didn’t ‘get used to’ me in my most ‘attractive’ way and expect me to always be hairless. It genuinely took 23 years to be comfortable being naked without removing the seemingly masculine hairs on my body. I still sometimes obsess and pluck and wax and hide, but I’ve realised FINALLY that I am not the only one with hair on my tummy, nipples and chest and that it is okay to just be neutral about it. To let it exist without hate but not necessarily with pride or love either. Just existing freely and safely. Teenage Sarah wouldn’t have dreamed this was possible. Ten-year-old Sarah shaving her underarms for the first time would never imagine a time when she adored that hair.

A quick lesson on PCOS: to be diagnosed you have to have two of the three markers. These markers are having excess androgens (male hormones), having irregular periods, or undergoing an internal pelvic ultrasound which analyses how your ovaries produce follicles. Each menstrual cycle, in a healthy functioning womxn, the ovaries produce eight follicles each, one of which matures to become the egg that is released during ovulation. If you have PCOS, your body produces more than eight follicles, and likely none of them produce a mature, healthy egg. In my case, each of my ovaries were making 27 follicles each month instead of eight. For more info, check out @pcos_to_wellness and @thepcosbible. I do have regular enough periods, in part due to the huge number of supplements I take to heal my body naturally, so my main symptoms were the excess follicles and androgens. The PCOS diagnosis explained why I’d struggled with acne so much since coming off the Pill fifteen months ago. The Pill masks PCOS symptoms and is also typically suggested as a solution by doctors. However, I did not want to go back on the Pill after spending a year trying to cleanse my very sensitive body of its impacts. I have spent $$$$$ on supplements to support my reproductive system in an attempt to balance the wildly swinging hormones that settled in late last year. That is not to say that going on the Pill to treat PCOS isn’t a valid and respectable option- it is! It didn’t suit me though, and I was annoyed that it was the only option offered to me by my doctors.

Soon after my PCOS diagnosis, my psychologist and I were discussing sex therapy to help with my orgasm journey. We knew my sexual barriers were related to my childhood sexual trauma, but we also wondered if there was something biological, or physical happening that was contributing to my struggle. Despite being in the safest relationship of my life, I was experiencing serious difficulties with my partner when we had penetrative sex. The pain sat in my left side, where I imagine my ovary is, when I had penetrative sex. During sex, I would experience a searing pain in my left side, around about where my ovary is. Any position that was *deep* sent a jolt of pain into my side that radiated down my legs. This was mighty tricky and coincided with the most pleasurable sex I’ve ever had which meant I pushed my body to have sex in pursuit of the big O. Generally I ended up barely able to move, lying flat on top of James as he gently, lovingly thrusted into me. It didn’t happen every single time and I noted that it was at its worst when I was on about day 14 of my menstrual cycle, so hypothetically the softening of my cervix and the extra sensitivity in my body associated with ovulation in some womxn increased my capacity to feel the pain. I didn’t make it clear to James when I was flailing, however, because I knew he wouldn’t even consider touching me if he thought sex hurt me. I’d grit my teeth and say I was feeling extra sensitive that day, which was what I genuinely thought was happening. I wasn’t exactly lying.

After months of this happening at least every second time we had sex, I texted Dr Clare, who I happened to already know from babysitting her little boy. At our initial appointment, she did an internal examination, although she stopped nearly immediately as I was already wincing. The vaginal opening is surrounded by a ring of tight muscle and mine contracted in preparation for potentially painful penetration. She felt my tummy, asked me a bunch of questions about my periods and my sex habits and decided that it was likely endometrial tissue causing me pain.

Endometriosis is a horrendous disorder of the vagina-possessing reproductive system which causes the tissue lining the uterus, called endometrial tissue, to grow outside your uterus and sometimes sticking to other organs. It can be incredibly painful because this tissue responds to hormones in the same way as other uterine lining, which typically swells and is released in a period. During menstruation, endometrial tissue also swells and bleeds but it’s trapped in your other organs where it cannot be released. This causes really intense pain, diarrhoea, bloating, bleeding between periods, bleeding when you poo and wee, cysts and inflammation (fun!). If you have these symptoms, know that this is NOT what you should be experiencing in a healthy, fully functioning body.

I have always been terrified of endometriosis, familiar with folklore whisperings of horrendous pain, infertility and invasive surgeries. I distinctly remember when Lena Dunham posted a photo on Instagram a few years ago in hospital after her laparoscopic surgery. She wrote a long caption about how debilitating endometriosis is and how hard it had been to be taken seriously in the medical sector. Doctors have a very solid history of belittling female pain. Interestingly, some of my worst experiences of GP’s have been women. Lots of my friends have experienced similarly scary treatment. As a young person not aware of her body at all, Lena Dunham’s impassioned words terrified me and confirmed my developing opinions on mainstream medicine following my own mistreatment during my eating disorder.

Dr Clare decided that my pain was likely linked to endometriosis, and she suggested I get a laparoscopy. I felt a huge amount of pressure as I genuinely didn’t think I could have endometriosis and couldn’t believe Clare was taking my sexual pain so seriously. The pain was like a dull ache, almost like a stitch folding in on itself inside my stomach. I hadn’t considered

that it could, even remotely, be related to endometriosis. Not being able to fully enjoy penetrative sex did not seem like a medical issue, which is the problem. Sexual pleasure is one very beautiful way to feel connected to yourself. To your power and your beauty. Without it, I was half of myself, a person that expected penetrative sex to burn and sting but managed this by throwing myself further into it, hoping to mask the pain with intensity and sensation that erred between pleasure and pain. Interestingly, I was also squirting every time we had non-painful penetrative sex during this time. Perhaps the painless moments were pure ecstasy for my still horny body.

I had the laparoscopy about two and a half weeks ago now. I woke up in recovery to Dr Clare telling me the surgery had gone really well. She had found a lot of endometrial tissue, most of it sitting directly behind my vagina. She explained that it would have 100% been causing me pain during sex and that sex should be a totally different experience now. Thank fuck. An answer. But this still meant it could come back. I had heard horror stories of people

having 10+ surgeries to clean the endometriosis from their body. I haven’t honestly heard anyone speak about experiences of endometriosis like mine. So, if you have, please send me any info! I’m feeling a little embarrassed comparing my experience with endometriosis to other womxn who seem to have it so much worse. This in itself tells me that I have not been adequately educated about my body to know about spectrums of disease. But what really frightens me is that I have internalised misogynistic principles that tell me female sexual pleasure is a privilege not a right.

THIS is the focus of thesexystory. Unlearning my own misogyny and trying to match my interest and passion about sex in the way I treat my own sexual body.

Part 2 of this post (coming out next week) is about my shaky (painful) return to sex post-laparoscopy and diagnosis.




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