El Jones

Since my first period at 11 years old I have experienced debilitating pain and abnormal and heavy bleeding. It interrupted my ability to attend school, play sports, and would often last up to two weeks at a time.

When I was 15, I was rushed to the emergency department with extreme and sudden abdominal pain. I was unable to stand or walk. I was told “you’re just ovulating!” and sent on my way with some Panadol. At 16 I was prescribed the combined oral contraceptive pill and again told that “painful periods are normal, just take the pill.”

I never spoke to a GP about my painful, intrusive, all-consuming periods again. It had become pretty clear to me I had only one option: “keep quiet and get on with it.”

My late teens and twenties were spent continuously taking hormone medication. But this was no match for my uterus. The bleeding, cramping, back pain, constipation, nausea and fatigue continued, impacting every aspect of my life and most severely my ability to study, attend work and the type of work I could do.

Holding down a job is hard when you keep calling in sick to your shifts. Going into work doesn’t feel great when your boss gets shitty when you’re always letting them down, and your coworkers are picking up your slack. You can’t help feeling that you are failing.

Fast forward to eight years ago, aged 30, I had read somewhere about endometriosis and the symptoms sounded all too familiar.

I was increasingly exhausted by managing my symptoms every month and new, worsening symptoms were appearing. Anything I had always considered “normal period poos” were now an agonising experience. I couldn’t go on like this anymore.

I had found a GP who I trusted. For the first time in my whole life, I had felt heard.

Two years later, 21 years after I began menstruating, I was diagnosed with stage 4 endometriosis via laparoscopic surgery. This is currently the only way to definitively diagnose the disease.

At my post-op follow up I was told I would need another far more extensive surgery due to the huge impact of the disease on my body. Both my ovaries were stuck to my uterus and my abdominal wall. My bowel had adhered to my uterus.

I had surgery number two in 2020. It took eight hours. I was bruised, exhausted and in pain.

The doctors recommended a minimum of three weeks off for recovery. I scraped three weeks together from my remaining personal leave and annual leave balances, so I didn’t have to go without pay for any time I was unable to work.

Meanwhile, ongoing and ever-changing hormone treatments aimed at relieving my continuing symptoms were impacting my sleep and my mental health.

The constant admin involved with managing appointments across an ever-growing team of professionals was exhausting and becoming a full-time job, including hours long appointments during business hours. All whilst working full time to pay rent, bills and survive.

I was working full time in corporate customer service in an open plan office, sitting on a cheap chair a two-minute walk from the nearest toilet that I needed permission to use.

COVID lockdowns had meant working from home had become an option and this was my first taste of flexibility at work. I cannot overstate enough the difference having the flexibility to work from home makes to how my disease impacts me.

Some days, the energy to get dressed, commute and sit in the office all day simply doesn’t exist. Being able to wear stretchy pants and be 30 seconds from my own private, clean bathroom and get my work done is INVALUABLE.

Today, I work in a very supportive workplace environment. When I needed time off for surgery number three in April 2023 – a hysterectomy – there was no scraping my leave entitlements together to make sure I wouldn’t be financially impacted. It made a huge difference to my recovery.

Remember how the pill was no match for my uterus? Well, two years post hysterectomy, every three weeks what I call “the haunting” will occur. The same old symptoms will absolutely floor me. For days at a time, I cannot get out of bed. My incredible colleagues support me, never being anything other than kind, caring and helpful.

Why does this feel like it’s something special? It feels exceptional and that I should be grateful.

A workplace culture of support needs to be normalised, and we need a flexible approach to entitlements to accommodate individual needs. There is no “one size fits all” when it comes to reproductive health.

If paid reproductive health leave and flexibility was available to me, it would have helped me to:

• effectively manage specialist appointments – which are only available during business hours
• have time off for the surgeries I needed and the time to properly recover – without the stress of losing pay, using up all my annual and sick leave or feeling judged
• have the flexibility to be more empowered to manage my health and my work the way I know best

Now that I am in a supportive workplace, it has made all the difference.

Everybody deserves this experience and paid reproductive health leave and flexibility is the start.