‘The pain was horrific’: Tilly, 25

When Tilly was 14 her periods started to get more and more painful. She told her parents and friends, but they brushed it off.

“On the days of my period, I had trouble walking to school. The pain in my abdomen and knees were so horrific that often I’d only make it halfway to school and have to call my mum to pick me up and take me home,” she said.

Tilly’s pain evolved suddenly – at first it was extreme cramps, lower back pain, and so much blood that tampons weren’t sufficient. She would wear two pairs of undies with tights on top, because she was worried she might leak.

“School was difficult because the first two days of your period with endometriosis really needs to be spent in bed. But because I had no diagnosis, I just had to suck it up. It’s the same now with work and life. Endometriosis still isn’t something that people take seriously enough for you to stay in bed,” she said.

Tilly is now 25 and has never experienced any pain worse than endometriosis. Panadol never works, nor does Nurofen, or Naprogesic, or any of the other over-the-counter medication for period pain.

Mid-way through high school, she started taking a contraceptive pill. The pill improved her endometriosis pain, but resulted in depression, so she decided to stop taking it when she was 20.

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Tilly’s endometriosis pain came back, and it got worse. Her doctor casually assessed that she “might have endometriosis” and offered for her to get an ultrasound, if she wanted one. The doctor never elaborated on how badly endometriosis could affect her quality of life or her ability to have children.

“Eventually, I ended up in hospital, which is where I got diagnosed,” she said.

“Currently, I’m at a bit of a stalemate. I’m back on the pill… and the depression isn’t as prominent. I’m thankful not to get my period, because I am genuinely terrified of how my body would react to getting it again, however I really don’t want to be on a medication that alters my hormones so much.

“I had Zoladex injected into me about two weeks ago, to stop the pain I’m still getting. There isn’t much information about it and the gynaecologist didn’t tell me a whole lot either, but turns out now I’m in medically-induced menopause.

“I feel conflicted because I don’t want to do too many synthetic things to my body but at the same time, I don’t know how much longer I can endure 3am trips to the toilet, feeling like I’m going to die.”

How to find help for endometriosis

I spoke to a lot of women with endometriosis and they all have similar stories. Many of them shared the view that there is a lack of education on women’s health taught in schools, a lack of accessibility to affordable women’s health professionals, and a lack of awareness through the media. They also said there is a huge stigma of shame attached to women overdramatising their pain.

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To move forward, we need to be the driving force. If you are experiencing pain, don’t hesitate to research for yourself and talk to health professionals. Get a second opinion – and a third, fourth, and fifth if needed.

If you’re looking for help with endometriosis, here are some suggestions: