Painful penetrative sex isn’t just a medical symptom. It’s a brick wall, a monster, an unwanted third partner in the bed.

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My friends sometimes describe me as the “mum friend” because I always carry with me a large unfashionable black bag filled with tissues, hand cream, wet wipes, hand sanitiser and the like. If anyone needs an antihistamine, I proffer one from the depths, apologising for the crushed and faded blister pack. I have three different lip balms in there, a handful of pens, post-it notes, sample sachets of SPF, a bag of mixed nuts and a heavy-duty metal water bottle.

I’m more of a pack horse than a mum friend, or possibly an “apocalypse friend”, the way I am always prepared for an uncomfortable situation. At the bottom of my unsightly bag is a smaller one my mum bought for me, green with a gold zip. It bursts at the seams with pain medication: paracetamol, ibuprofen, naproxen, diclofenac, codeine and tramadol.

If it’s a good month, I can plan for pain days and I know when to stay close to home, but a bad month means the pain can start at any time, anywhere. I’ve left birthday parties, after-work drinks, hikes, book launches, lectures and work. I’ve sucked back tears in the backs of Ubers and buses, desperate to see my front door.

The intensity is as irregular as the timing. Sometimes naproxen is enough to divvy up the discomfort into smaller parts that I can manage. Other times I curl up in a ball on my bedroom floor in between dynamic stretches that I’m convinced do next to nothing.

I’ve always described menstrual pain as similar to food poisoning but without the nausea, although sometimes I get that too. For me it comes in waves that grip my lower abdomen and the small of my back, then it subsides for a minute. I’ve found the only time the pain goes away completely is in “ultimate bridge pose”, which I can’t hold for very long.

Collapsing on my bedroom floor as another wave swells in my belly, I think back to high school and learning about period pain. I distinctly remember a little list of home remedies, printed in a textbook in health class. Herbal tea, bananas. Limit caffeine and sugar. Engage in moderate exercise.

Fuck your herbal teas.

It goes without saying that in the early 2000s we weren’t taught about endometriosis.

I was tentatively diagnosed before I was officially diagnosed. My gynaecologist, a tall, Finnish woman with a frankness I found extremely comforting, had been feeling around inside me with gloved fingers, looking for pain points. When she found one, she leant into it.

“Here?” she asked.

“Yeah, that’s it, that’s really bad,” I said, grimacing at the blank ceiling.

“Endo?” she said to the nurse who was standing bedside.

The nurse nodded and stepped away to write something down as I began forecasting the next six months in my head. I knew enough from friends of mine that surgery was necessary for an official diagnosis, I also knew that endometriosis doesn’t show up in ultrasounds or scans which is why mine had been missed for so long. But it shouldn’t have been. I had been hospitalised three times for ruptured ovarian cysts and diagnosed with polycystic ovarian syndrome, but nobody had ever mentioned the very possible comorbidity of endometriosis. Not one single doctor had ever looked at my symptoms and investigated whether there might be a correlation, for over 10 years. I had all of the symptoms.

Endometriosis is a condition where the endometrial lining that normally grows inside the uterus grows in any number of places in the human body. It can, and does, fuse organs together. Left unchecked, it will grow throughout the abdominal cavity and reach sticky fingers towards the lungs. Endometriosis has been found in the brain.

What my gynaecologist had located was a nodule of endometriosis, one of several. She wouldn’t know for sure how widespread it was until my surgery date, which I postponed for an entire year because I was about to start an MA and I’d heard the recovery process could last weeks. I was already well-versed in negotiating my life around pain; I didn’t know it then, but it would get exponentially worse in the year that followed.

My little list of symptoms was in my notes app, titled “Pain Diaries”:

• Severe period pain that begins before my period starts
• Severe lower back pain before and during my period
• Painful ovulation
• Mid cycle bleeding
• Irregular periods
• Extreme inflammation
• Painful penetrative intercourse

If you Google endometriosis symptoms, that last one is often included at the end, thus it held the same place on my own list. It reads like an afterthought, a last-minute addition, but it is the one symptom that has affected my life the most. It is also the one least talked about.

After the gynaecologist appointment, the first person I thought to message was my ex-partner, E. The sun was beating down as I hit the streets of Newtown and I thought to grab one of the SPF sachets I carry in my ugly black bag. For the first time in a long time, I felt a latent stirring of hope, almost big enough to grab onto. E was happy for me, as happy as one could be in regard to the diagnosis of a medical condition, but beneath his congratulations, I could feel a question brewing, one that he was wary to ask but which eventually fell out of him.

“Would things have been different between us if you knew back then?”

E had moved back to the UK after his visa had been denied, which was the reason I gave to most people if they ever questioned why things didn’t work out between us. In truth, things hadn’t been working out for a while, but the reasons would immediately cause an awkward shift in conversation if I ever said them out loud.

After a few drinks, my tongue might loosen enough to quietly explain to a good friend that we were “sexually incompatible”, but that made it sound like one of us was into something truly depraved that the other couldn’t deal with. I’d then try to patch that up with something like, “We didn’t fit together well”, but even that sounded ludicrous, like sex was a jigsaw puzzle or a game of Tetris. “No, no,” I’d finally say, “the way our bodies were made up, he would hit my cervix every time and it was excruciating.”

I now knew that he hadn’t been hitting my cervix. The pain I’d felt while my gynaecologist was feeling the nodules of endometriosis inside me was the exact pain I associated with sex with E. Sex with most men, actually. E was just the only one I’d ever told about it; the only one I’d ever asked to stop.

Even with all the distance between us, as I stood in the sun in Newtown and E braved the winter in Manchester, I didn’t feel that I could be totally honest.

“I don’t know,” I replied.

But it absolutely would have been different. At least, it would have had a chance to be.

My sexuality was something I carefully cultivated and believed to be a core component of my identity. In another life, I considered studying psychology so that I might enter the field of sexual therapy. Some of my favourite conversations consider the nuances of sexuality. For some people, sex is the only joy in their lives. For me, it allowed for a feeling of connection with people that I didn’t otherwise feel.

As a teenager, the sexual world was one I was excited to join, even amongst the warnings of STDs, pregnancies and initial pain. After the primary awkward fumblings and into my late teens, I managed to avoid STDs and pregnancy, but the pain prevailed far longer than I was assured it would. I broached it with my GP at the time and she changed the contraceptive pill I was on, yet the pain persisted. Every single time I had sex, I braced for pain when I should have been welcoming pleasure.

To this day, I can’t quite put into words why I never said anything to my partners. It wasn’t that their pleasure was more important than mine; I wasn’t somehow martyring myself for the sake of their good time. It was more that I had put sex on such a pedestal that I desperately wanted to be good at it. To cry out, to ask them to stop, would have created a line of tension I didn’t know how to break. I wanted it to be easy, and pretending was the closest I could get. I wonder now if my lovers felt the divide; I wonder if they would have cared.

During my 20s, the pain worsened, as did my other symptoms. But my hormones were in constant flux due to polycystic ovarian syndrome – at least that’s what I thought – so I blamed the 50 days I went without a period on that. The pain itself I blamed on my cervix: maybe it was in a weird place? Maybe it was oddly prominent? I convinced myself that I was anatomically wrong and therefore would have to suffer the consequences if I wanted a relationship, if I wanted love, like some housewife from times long gone. I gritted my teeth; I turned my face away.

My silence during these acts goes against everything I perceive myself to be. In almost every other aspect of my life, I am outspoken, I am often “too much”. I’ve been described as “intense” too many times to count. I am writing an essay about my fraught sex life, you are currently reading it, does that not scream brazen to you?

Despite my efforts to mask the pain, sex was often the reason for my relationships ending. The pain cut them down before they ever had a chance to grow, it ripped them from the soil in one fell swoop. Once, at a New Year’s party, someone said that I had “divorcee energy” and everyone heartily agreed. I was perpetually single or just coming out of some short-lived romance.

In my head, sex was a fluid act for everyone but me. Everyone else was having easy, passionate, spur-of-the-moment encounters. My friends were being pushed against walls as we spoke. Logically, I knew this had to be incorrect because my friends’ boyfriends were often terrible, but in the conversations we had regarding “bad sex”, it was more often a case of their partners not lasting very long. The word “boring” was thrown around a lot. Nobody ever said anything about pain, so I didn’t either.

Around this time, I realised I had something of a saving grace: I was queer. I could just date women. I wouldn’t have to acknowledge that there was something “wrong” with me and I wouldn’t have to lie by omission to the people I was dating. This would have worked if I were gay instead of bisexual, but the fact was, I was still attracted to men. It felt like I had cut my sexuality in half to save face.

So I continued my stream of short-lived flings with men, never letting anyone get close enough to see how my face contorted when I wasn’t adequately masking my pain.

In my late 20s, I met E. We matched on Tinder and met at a bar after work. E was everything I was looking for in a person. He was intelligent and kind and funny and beautiful, among other brilliant things. And he liked me.

When we finally did sleep together, it was more of the same. I felt dejected and worn thin. I was forever cradling a small glimmer of hope that maybe this would be the one, this would be the unicorn of a person who was anatomically built in such a way that it didn’t hurt, but that magical situation never eventuated. I excused myself to the bathroom, sat on the tiled floor with my knees to my face and cried. When E came to the door, I told him to leave, figuring I would never see him again.

“If you tell me to leave, Amber, I will leave. But I don’t want to,” his muffled voice filtered through the door.

So he stayed. I came out of the bathroom and told him everything. He asked me why I didn’t say anything about the pain and I didn’t have a good answer for him.

E was a truly beautiful person. He made me laugh, he was very emotionally intelligent, he swung me round when he saw me. He loosely tracked my own jumpy menstrual cycle so he could buy my favourite Lindt chocolate at the right time. He fully supported me going back to university at 29 so that I might eventually do the MA at the IIML, something I wasn’t sure I was good enough to apply for. He had an incredible appetite for life, something I wasn’t convinced that I had. My parents loved him, my sister loved him, and he loved me.

It wasn’t enough. Me being honest with him didn’t solve the issue at hand. Without going into detail, we tried a number of things to alleviate the pain and none of them worked. Penetrative sex was consistently hideous for me and it got the point where I feared him touching me. It doesn’t feel like a lot, writing this down. It sounds like something you could definitely navigate in a healthy relationship. But when it happens to you, it swells to envelop the love you have for your partner, it blooms so big that it pushes you apart. I didn’t want to have sex with him; I didn’t want to have sex with anyone. E was so incredibly patient but the love I had for him was now muddied with guilt. I felt that he deserved a well-rounded love with intimacy and affection and physical expressions of care, not some twisted pairing with a person who shied from his touch and was sometimes irrationally angry at something he had no control over.

We broke up, we got back together. We talked about sexual therapy. We broke up, we got back together. By the time his visa application was rejected, we had begun speaking about opening our relationship up, something he wasn’t sold on. I wasn’t sold on it either, but I felt it might lift some of the guilt I felt about not being able to fulfil the physical aspect of our relationship. I loved him and when he was forced to leave the country, I cried openly at the airport. But I also felt the tiniest bit of relief: I didn’t have to try any more. I could just be alone.

The fated gynaecologist appointment came about by accident, sort of. A routine ultrasound of my ovaries came back showing a polyp in my uterus and I was booked in to see someone about a hysteroscopy. I met with the tall Finnish gynaecologist, she performed the hysteroscopy, and I liked and trusted her so much that I went back with my list of symptoms, seeing if she could help.

Cut to my unofficial diagnosis of endometriosis and her scheduling a laparoscopy 12 months in the future. That year was absolute hell. The stress of the MA and a terrible winter kicked my symptoms up several notches, and I lived in loose waistbands and a sea of prescription medication, often Zooming into class from my bedroom while my surroundings swam in the corner of my vision.

Contrary to my declarations of abandoning the search for love, I had also begun seeing someone else, someone equally as wonderful as E, but our sexual encounters hurt considerably less. Before you ask: no, size didn’t come into the equation for me personally. The pain knew no rhyme or reason: sometimes it was worse and sometimes it was better, but it was always present and it didn’t discriminate based on length or girth.

When the day of my laparoscopy finally arrived and I woke up in the recovery room; my diagnosis was still tentative. My gynaecologist had found a range of things inside of me, including calcifications and more polyps, but the samples had to be tested to confirm endometriosis. Anaesthesia had never really affected me past a few minutes of wooziness post waking up, but this time I openly sobbed once I was alone in my hospital room, only calming myself down because the shaking hurt the three new incisions on my belly.

The next two weeks of recovery passed slowly but with little drama. I couldn’t stand up straight for a couple of days, but I welcomed the slow passage of time after the frantic and painful year I’d had. Then, when I was allowed to take the bandages off, I looked at the tiny incisions and wondered how anyone could see what was wrong with me through those little windows. The one in my belly button made me feel weird; it still does.

You’re technically allowed to have sex 7-10 days after surgery of this nature. I waited a month, genuinely terrified that it would have made no difference at all and I would be in a place far worse than square one. When the time came, I automatically braced for pain, and … nothing.

There was nothing.

It was a Christmas morning kind of feeling, a burgeoning feeling of opportunity. The sun is shining, someone is greeting you at the door of your family home with a glass of champagne. Or you’re 16 and getting your first car, you can go anywhere you want. You’re moving into your first place outside of home, you don’t have a curfew anymore. I don’t have the words for the sense of relief. I heard the door slamming closed on a part of my life that had metastasised to the point of infecting almost every other facet. I didn’t cry, I laughed.

Unsurprisingly, the next month I received an email confirming my endometriosis diagnosis. I posted it on social media and urged people to seek help, to keep seeking help in the face of certain condescending medical professionals who question whether you might just have a low pain tolerance. It takes on average seven years to get diagnosed with endometriosis and it’s a condition that affects at least one in 10 women (almost certainly an undercount, given how hard it is to obtain a diagnosis).

My endometriosis was not widespread by any means. I can’t imagine what it would feel like to have it spread to your bowel, your diaphragm. Some of my friends have cases far more severe than my own.

I spoke with my friend J recently, who was turning 26. When I told her I was thinking about writing something about painful sex because it’s often left out of the conversation about endometriosis, she said she often felt like she wasn’t good enough because she couldn’t have sex for long periods of time. J’s partner nodded imperceptibly. They had been through this too, they had had the same conversations that I had. Sex as an expression of love or desire had been stripped from them at times.

J was on tramadol for so long before her surgery that she has nerve damage. She goes to the same gynaecologist I do.

My friend T had a 1kg fibroid removed from her uterus. She has a scar that runs from one hip to the other, like a smile. While the surgeons were inside of her, they noted extensive endometriosis.

“Why didn’t they remove it?” I asked, incredulous.

“They weren’t there for that, I guess,” T replied, sipping her coffee.

“Why didn’t they schedule a follow up then?”

T shrugged.

“I never heard from them again.”

T knows painful sex like I do, like an unwanted third partner in the bed. We talked about the pain endometriosis has caused outside of a café in the city and that felt like a victory to me.

And now, I suppose, I am talking to you. Because lying about the pain did far more damage than being honest about it would have done. I didn’t give anyone a chance to come through for me, to construct plans or alleviate symptoms or help. I think some of my ex-lovers would have liked the opportunity to make things better for me, to at least talk about it.

These three little dashes on my abdomen speak to a world of pain where there could have been pleasure. They speak to broken relationships and lying through my teeth and faking ecstasy. But I am fortunate in a lot of ways. For some women, their laparoscopy scars speak to potential struggles with infertility. I have never wanted children; my heart goes out to those that do. My endometriosis wasn’t extensive and it is potentially slow growing, which means I may be able to push future surgeries back. It will almost definitely grow back, though. There will be pain again. I will add to my collection of scars.

For now, it is odd to be mostly free from pain. A younger me might have gone absolutely wild in the absence of it. At 33, I’ve embraced a kind of glacial living. I move slowly, I take care of myself. I write silly little stories and then hectic and deeply personal essays, for the same reason I carry so much useless stuff in my bag: in case somebody else needs them.