Endo Stories: Supercalifragilistic-Endometriosis

Endometriosis is a condition that affects 1 in 10 people who are assigned female at birth. Despite that, 54% of people don’t know what it is – rising to 74% of men. We want to help change that.

In the run up to Smutathon 2020 on September 26th, we’ll be sharing weekly ‘Endo Stories’, written by other bloggers, authors, and awesome people we found on Twitter. They’ll tell you about their experiences with endometriosis, and about some of the challenges they’ve faced, from diagnosis to treatment, from sexual pleasure (and pain) to fertility and menstruation.  

Today’s story comes from Jessica Hanly, an Irish blogger living in Norway, who’s writing for Smutathon for the first time. Jessa can be found on Twitter @hanlyjessica and Instragram (alabama_curly), and has her own site, which you should definitely check out. If you’re affected by her story, or by the issues discussed in it, please do consider donating to Endometriosis UK to help them help people all over the UK who are struggling with endo.

I was 14 when my womb and its two best friends started acting up. I had come back from a holiday in America and six months later still had no period. I remember telling my step- mum on my way to school. She looked at me incredulously, ‘What?! Are you pregnant?!’ “Yes mam, I’m pregnant at 14” was my sarcastic reply. To her credit by the time I got back from school, she had me booked to see the doctor the next day.

I worried that whole night: maybe I’d broken my fanny! I’d started heavily masturbating at 11, loving the feeling and being really curious, fantasising about kissing Duff Mckagan from Guns N Roses. This was it, I’d broken it and now I would never get another period. We went off to the doctors the next day who announced that it was pretty common for periods to stop with a change in external temperature?! Mam looked at her like she was crazy. Two days later we were in a specialist’s office, waiting for my stomach to be scanned. “CYSTS!,” the specialist exclaimed, and turned to me, adding hastily that it was nothing to worry about and that they’d just disappear with time. I felt like this would be the sentence I’d hear for the rest of my life.

My periods returned and with them came what felt like an army of fucking marching fae in my womb. I would feel sick and get shooting pains up my ass when I sat down, not to mention the Niagara of blood. I was afraid to use tampons, they just seemed so unnatural so I stuck to two or three pads, only later progressing to tampons in my twenties when I was running out of options (or so I thought).

I was eighteen when the issue first properly reared its ugly head and I ended up in hospital during a night out. The hospital thought I was drunk; I’d had one or two drinks, so knew that I was not. I had been found curled up on the ground clutching my stomach. Oh and I had my period. My aunt was called, she came to the hospital, they took my fucking appendix out(!!), and the next day I was awake. My father standing at the end of my bed, wondering what the fuck was going on. I tried to describe to him what I had felt but he wasn’t interested and I think everyone thought I had done it for attention. My step mum then told me that they had found no issue with my appendix and it was perfectly fine. Well of course they hadn’t!

I suffered on, not knowing what was happening, dreading my period every month and bulk buying feminax to take the edge off the pain. A car accident when I was 25 exacerbated the problem tenfold, due to damage to my lower stomach and now I was in more pain every month. Back and forth to doctors  (mostly men) who would press my stomach and say that I did feel a bit tender but “nothing to worry about, it’ll probably disappear.” Finally in 2011, I registered at a new clinic and was given, again, a male doctor. Only this time, he was interested in my case. “So tell me, what’s been going on”. I could have cried. I was there for 40 mins explaining every detail of my periods, the cramping, the pain going to the toilet, how sitting was a nightmare for the first two days, how I would get these unmerciful sharp pains, feeling sick and like my womb was going to drop out.

He did a smear test, as I was due for one and referred me to a gynaecologist. A week later I was called in, it appeared that my smear test had shown high grade dyskariosis. Fuck my life. My other issue was put on the back burner. Then came, possibly the worst encounter with a male consultant I have ever had. The nurse was an angel, a fucking angel. While this man gritted his teeth and told me to “bloody relax will you” whilst looking like some kind of psychotic killer with a 10-inch needle. Oh god, I don’t think I will ever forget it. He made me feel ashamed and violated; I was already ashamed of my body letting me down, of the circus of horrors every month, the pain during the rest of the time when I WASN’T bleeding. Where WAS MY FUCKING TAMPAX ADVERT PERIOD??

After that, I took it upon myself to do as much research as possible into what was happening to me. I stopped using tampons due to the evidence piling up that they are just lethal for your body*, and I invested in a menstrual cup. One thing I have noticed since I got one is that my periods are shorter and I get a little less pain…why is that?!  In 2017, after another horrible encounter with a male doctor, I transferred to a female doctor citing “irreconcilable differences”, and no one questioned it.

I was getting the constant feeling that my womb was going to drop out, a common sensation from fibroids apparently. I booked in with the female doctor and explained, yet again, my history. I got that phone call on holiday with one of my friends in the UK. Well, wasn’t this just one big womb party…

When I got home, I was then referred to the hospital to see a gynae specialist, who suggested a hysterectomy. The whole thing is a blur, because one minute I was explaining my symptoms, the next I was being told I was probably one of the most symptomatic people for endometriosis they had ever seen, that I definitely had at least one big fibroid, and that I needed my womb out.

“But,” I interjected, “why can’t you just do a laparoscopy and find out for definite? No one has ever done one!”

“Oh, no we can’t do that, you’re too overweight.” The nurse was still checking my blood pressure when I told her to stop, gathered up my things, and walked out.

My doctor phoned the next day, asking me what had happened. I explained why the prospect of ripping my womb out, triggering an early menopause (which I absolutely did not know enough about to make a decision that quickly), and not even doing a laparoscopy “because I’m too overweight” seemed utterly absurd to me. So I still have my womb, I’m 40 now, I still dread my period every month, and I’m at what I feel Is a dead end, because no one will really listen.

And that’s where Endometriosis UK come in. The work they’re doing will help build awareness among medical practitioners, as well as the general public, which will directly help people like me. The more money Smutathon can raise to support them this year, the more hope I’ll have that things will be different for all those 14-year-olds panicking about their periods in future. So go donate now!

(For the record I’m a size 18, weigh about…oh who the fuck cares. Weight or no weight, you should get the care you deserve. Good thing I never wanted children either, what a shit show that would have been!)

*NOTE: this is the author’s opinion, and does not reflect the views of the Smutathon Team.