‘So scary’: Teen’s struggle with incurable illness

 

CHELSEA Timandi looks like any other teenager preparing for her looming Year 12 exams.

But just getting out of bed some days is a struggle.

The Robina 17-year-old has not completed a full week of education since primary school and fears she may never manage to hold down a normal job.

Chelsea has suffered from crippling endometriosis for more than half of her life.

The chronic disorder - where tissue similar to the lining of the uterus spreads to other parts of the body - affects one in 10 women in Australia.

The incurable disease can cause intense pain, as well as infertility.

"I see my specialists more than I see my friends and family," Chelsea told the Bulletin.

"I get blood tests every week. It impacts me every single day."

Chelsea Timandi fears she may never hold down a normal job. Photograph: Jason O’Brien.
Chelsea Timandi fears she may never hold down a normal job. Photograph: Jason O’Brien.

It took Chelsea two years to tell her parents she had started her period at the tender age of nine, often staying up all night in her room unable to lie down.

By the time she started high school the severe pain had begun, but it took until she was 15 to be diagnosed with endometriosis.

"I'd go to the toilets and cry from the pain. For three years straight I did not stop bleeding.

"These days I have at least one or two days off school a week, but at the start of the year I was only going two to three days a week.

"Just showing up is tough, physically and mentally it is so hard on me."

After two surgeries, artificial menopause and a cocktail of strong daily pain medication usually reserved for cancer patients, Chelsea is finally seeing improvements in her condition.

But even on good days she still struggles with the side effects of her illness.

Last year the teen was diagnosed with fibromyalgia and POTS syndrome.

Chelsea Timandi her mum Helen. Photograph: Jason O’Brien.
Chelsea Timandi her mum Helen. Photograph: Jason O’Brien.

A recent study by Ernst and Young found endometriosis cost the Australian economy $7.4 billion a year in lost productivity.

Chelsea said she was not surprised, after having to quit two after-school jobs because she couldn't cope with the pain.

"Most of my shifts on the front counter were about three hours and there were times where I'd be on break huddling behind the counter silent screaming in pain, or serving customers with tears in my eyes.

"If I can't handle a three-hour shift at a hospitality job how am I going to work full-time and support myself, it's so scary to think about."

Chelsea's mum Helen Timandi said she was scared to think about what the future would hold for her daughter.

"It's always in the back of your mind," she said.

"Because she's in Year 12 now and it's coming up to that time of year where they have to put in their uni selections, you think to yourself what's going to be the best career for her.

"She would love to be a nurse, but how is she going to handle that physically?

"How do you manage to have a normal life?"

Professor Grant Montgomery, a researcher at University of Queensland (UQ) Institute for Molecular Bioscience, is leading the charge in endometriosis research in Australia.

He is exploring whether there could be subtypes of endometriosis, similar to many cancers, which need different treatment options.

"Because we don't know the cause of endometriosis, current treatment is only treating symptoms but not the cause, which means treatment is not effective in all cases," he said.