'I struggled with pain during sex. It was years before doctors listened to me.'

It took Alana Crofts a long time to realise she didn't just have to accept painful sex as her reality.

Endometriosis, a disease where tissue similar to the lining of the uterus grows in other parts of the body, has debilitated the 27-year-old's life since she was 15.

And she's not alone. It's one the biggest causes of chronic pain in the country, affecting at least one in nine women and girls.

The condition can cause sex to be painful, which many people with endometriosis have just come to accept.

Women are often brushed aside by health professionals, who claim it's "normal". For years, Alana was among them.

"Intimate relationships were really difficult to navigate," the Coffs Harbour resident tells Mamamia.

Her pelvic pain was often so extreme she couldn't leave bed.

Despite having a supportive partner, Alana struggled.

"There was a feeling of guilt around having difficulty with intimacy. It wasn't something I wanted to impact on my relationship, but inevitably it did.

"There's so much shame and stigma around painful sex."

Alana's endometriosis story — which she shared as part of Osher Günsberg's new documentary, A World of Pain — mirrors that of thousands of other women.

Watch the trailer for Osher Günsberg:

 A World of Pain. Post continues below.

Speaking to Mamamia, Alana recalls experiencing such bad pelvic pain since her first period that she would lose chunks of time.

"I was missing so much school because I'd be unable to get out of bed. I was in crippling pain and it would make me feel nauseous," she said.

"Being that young and not having experienced significant pain before, it was scary."

But like so many other women, when Alana went to the doctor they told her to go on the pill.

An endometriosis diagnosis takes on average about six to eight years, according to the Australian Institute of Health and Welfare. This is largely due to a lack of awareness, stigma and symptom normalisation.

Patients are often told the pain is "in their head" or advised to go on the pill instead of doctors exploring the root cause.

By the time she was 18, Alana realised her "excruciating pain" was not "normal".

"I was starting to try to get doctors to take my health more seriously. It was impacting my life so much I was like, 'I need help with this'," she said.

Alana Crofts and Osher Gunsberg share an emotional moment during the filming of A World of Pain. Image: SBS.

It wasn't until an emergency appendectomy at the end of 2017 that Alana finally got the answers she was searching for.

A doctor briefing her on the surgery noticed she had a lot of endometriosis tissue in her abdomen and referred her to a specialist.

"It wasn't a shock but it was finally nice to have an explanation and get the ball rolling on getting some serious help," Alana said.

She believes years of being dismissed only added to her pain.

"With chronic pain, your body starts to react differently to pain. If you're in pain for a really long time it changes the pain signal pathways in your central nervous system," she said.

"I do wonder if it had been treated earlier if I would have ended up where I have with my chronic pain."

Alana, right, with her mum.

A diagnosis was the start of its own journey.

For years, Alana has drained her savings on medical bills and travel for specialist treatments in Sydney — a 5.5 hour drive away.

"It took a lot of time, finances and emotional energy," she said.

"I was in so much pain all of the time. I was really grumpy.

"I'm so grateful for the people that suck by me when I was miserable. Pain does that — it wears you down, day in, day out. You get sick of it."

Alana's pain took over her life to the point where she couldn't leave her house without carrying an "emergency pain pack" with medication and a heat pack.

"The pain was so bad it would often make me vomit… I was having to plan so much around activities because what happens if I don't have access to a microwave for my heat pack or I'm debilitated and can't drive my car?"

"I would get embarrassed if I was out with friends and hit by this horrible pain, sweating and nauseous and having to lie down.

"It narrowed my world. I felt like I almost lost a bit of my independence."

Things changed in December when Alana underwent spinal surgery to receive a spinal cord stimulator, a neuromodulation device that is surgically implanted to help treat chronic pelvic pain and functional symptoms.

The procedure is often a last resort for patients diagnosed with chronic pain that can't be treated by more conservative methods.

"There was so much weighing on that surgery. I'd exhausted all other treatment options by this time and it was not guaranteed to fix the problem," Alana said.

"Emotionally, there was a lot riding on it for me."

The trial spinal stimulator in place and an X-ray of it in place.

Since then, Alana's world has transformed. She recently returned from a trip to Scotland, which wouldn't have been possible without the surgery, and is preparing to move to Tasmania as a researcher on an endometriosis project.

"I hope to continue in research and advocacy… I hope that people understand that chronic pain is a lot more common than we realise."

She wants chronic pain sufferers to know they're not alone and that more light is being shed on the topic.

"There are people who care and who do want to help," she said.

"Everyone deserves to have health and pain taken seriously. I hope anyone going through the difficulties I did can know, 'I have the right to be heard. I'm going to get out there and make someone listen'."

Osher Günsberg: A World of Pain premieres Thursday 21 November on SBS and SBS On Demand.

Feature image: Supplied.

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