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Living with Endometriosis, a sex workers story.

Allow me to introduce myself, I’m Leah / Coco / Crystal / Elle.... or whatever name wasn’t already taken. It was always some kind of bizarre pot luck game when I started at a new club to pick a name until you find one no-one else has. Most of the time I was Elle, so that’s who you get now.

Before we get a little more intimate, here’s the whistle-stop journey through my sex work backstory for context. I set foot in my first strip club when I was 18 years old, auditioning at a tiny little venue hidden down a Harrogate back lane. Following that rollercoaster of an induction, I worked in various sex work roles on and off for the next 20 years or soand I loved it. I stopped stripping around 6 years ago (ish) and my digital whoredom kind of fizzled around 4 years ago,when I no longer had the mental or physical energy to maintain the mask. Although I still have some digital content out there - let’s face it once you are naked on the internet, you are naked on the internet forever!

Those of you familiar with endometriosis will recognise thestory I’m about to tell of the regular betrayal my body puts me through. In fact, statistically 1 in 10 of you are sufferers too. However, even though I have suffered since my teens I wasn’t actually diagnosed until 4 years ago, after an exploratory laparoscopy. So for the majority of my adult life I was in the dark, confused and kept being told there was nothing wrong while I was in hell on a routine basis. Another sad endometriosis statistic is that it takes on average 8 years to diagnose, and everyone’s experiences can differ greatly. For me I had always had heavy periods, like wearing a tampon and a backup pad for school kind of heavy, combined with pain that made me feel sick and turned my thighs to jelly. I was put on the pill around age 15 to try and manage the situation and I just assumed what I was feeling was normal but the absence days from education became more and morefrequent. Looking back this is clearly why the appeal of flexible working hours with good pay that I controlled, was the natural choice.

So for 3 weeks out of the month I hustled my way around north Yorkshire in 8-inch plastic heels and then spent 1 week cuddling a hot water bottle and crying while I watched trashy 90s daytime TV.

Over the years the amount of time I was unable to work extended to ovulation time as well as the dreaded period itself. I also had a car accident which left me off my heels for a while. So I decided to do what any good hustler would do, I adapted. I started working in a call centre part time where I could medicate and cuddle a hot water bottle at my desk, and strap on my thong whenever my body would allow it. This double life continued for years and years, and it served me well. A little reminder here that majority of this work was before the digital dawn of sex work that we all know and love today, so I needed to be physically present and able to stand to be able to make my money most of the time.

I would say in my endometriosis journey there have been a handful off pivotal moments that really stuck with me. The first moment that is burned into my brain is the moment I really thought enough is enough, I need to push my GP for a specialist referral because this is scary. I was due to perform at a ticketed event (luckily it was just 1 act then I was out of there) and while I was painting on a smile, I felt the well-known kick to the gut. I couldn’t allow myself to think about the pain because a familiar warm feeling was starting to trickle into my pants and it was only a matter of time before things got heavy!

I grabbed my phone and my emergency tampon from the depths of my bag and shuffled to the loo. That day my period was heavy. So heavy a flow that in the time I popped in my tampon and sat for 5 minutes to build the courage to try and stand…I had bled through. I was fucked. I needed to be on stage in nothing but a micro thong in an hour and I was stuck on the toilet alone. It was like my entire period came out in the hours before I went on stage.

That night my co-performers were all cis male drag queens so I was out of options. My hero that night was a friend who was coming to the event, I text her my plea for help and sat on the loo trying to think how the hell I was going to make this work. My mate really came through for me that night, she slid a little Chanel paper bag under my stall door containing an impromptu period survival kit of super-sized tampons, pain killers and a drink; checked the bloodbath in the loo for me just to make sure I wasn’t imagining it and she even hung around for the obligatory string on show check before I stepped on stage. Safe to say this experience sent me straight to my GP the next day and also led me to explore more home based digital sex work options. An unexpected blood bath is easier to deal with in your own home if all you have waiting is an eager cam audience.

Following checks from head to toe that took months to rule out everything else that could be wrong with me, I was finally referred for a laparoscopy. As I waited for my results in a slightly sad looking hospital waiting room, squeezing my partners hand, I could feel my emotions bubbling up inside me. Excitement that I would have actual answers, fear that he would say it was all in my head and lots of confusion. Pre surgery my specialist mentioned that they would remove some endometriosis tissue if there was time during the exploration, but as I was given no information upon discharge I had spent the following 4 weeks trying to analyse every feeling to find a change.

‘How have you felt since the operation?’ he asked. I wasn’t sure how I was supposed to answer. But I took a big breath and said nope, no change. ‘Ok, that’s to be expected. We found spots of endometriosis and scarring in the Pouch of Douglas and on your right ovary, as well as other areas’. There it was, the moment I had waited years for.

I had been seeking medical help since my teens and finally at age 38 I knew what was wrong with me.

Here was another one of those pivotal moments. I wasn’t imagining it. My pain wasn’t normal. I had pinned so much of my mental health energy on this moment and I felt…

Devastated. Nothing had changed. A weight wasn’t lifted. I just had a label, and a label that was going to be around for the rest of my life. This wasn’t how I thought I would feel. I had focussed so much energy on a diagnosis being the answer,that when I got it the arse fell out of my world and it took a long time for me to come to terms with it. I actually felt betrayed by my body in a way I wasn’t expecting. I felt defective as a woman and that really knocked my ability to monetise my sexuality in the way I was used to. My womanhood was making me ill. Hi, I’m Elle – the sex worker with a dodgy Douglas.

My healthcare now is a merry go round of trial, error and painkillers. I have had one round of excision surgery as the scar tissue around my right ovary had caused it to adhere to my side wall, which gave me some limited improvement for about a year, and been offered induced menopause as an option. However, I’m terrified. Throughout my life I have always had a problem with hormone based contraceptives. I’ve been on various pills, contraceptive implant, contraceptive injection and an IUD, all with a similar impact on my mental health. My pattern seems to be no sooner do Iintroduce hormones; I end up on antidepressants. I really need to look my fear in the eye and do my research but my mental health fears plus a global pandemic have left me in limbo for now.

If there’s one regular about my endometriosis, it’s the irregularity of my symptoms.

Twice a month during ovulation and menstruation I’m pretty much useless. All I can do it take pain killers, cuddle a hot water bottle and binge true crime on Netflix. Alongside the pain I also suffer from chronic fatigue that is sometimes harder to deal with to be honest, and have been known to pass out completely. But some of the time I operate at a level of pain that I can work with, at least for chunks of time enough to be productive. I can’t always predict when I will be able to work, I just have learnt to listen to my body and take it from there. While in the past this meant sex work was the perfect venture for flexibility and maximising earning potential during my ok times, now I run my own HR consultancy and personal development business instead.Offering support to sex workers and allies alike from CV writing right thought to leadership coaching. Truth be told it’s just another entrepreneurial venture to give me the flexibility to manage my condition, only this time it’s easier to hide my hot water bottle.

You are not alone. For support with endo visit the U.K. charity Endometriosis U.K.

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