Adriana Xenides

Reporter: Andrew Bourke

It's hard to believe this is the same woman. Gone is the svelte figure of former game show goddess Adriana Xenides, instead she's bloated and most of the time in excruciating pain. "All of a sudden my jacket I had buttoned up, all the buttons flew off the jacket, the zip in my pants broke and this monstrosity- like something from alien and I was rushed to St Vincents Hospital and they were saying who's her gynecologist? Who's the obstetrician? They thought I was having a baby" says Adriana. But she's not pregnant. She's been struck down by a gastro intestinal digestive disorder that swells her stomach to more than double it's normal size, and it's almost cost her, her life. "I was hemorrhaging very badly and I was dying. I remember being on life support and people saying whats happening, she's not going to make it. She's not going to make it and you hear all these things around you and you think this is it" recalls Adriana.

Since Adriana revealed her condition on Today Tonight, we have received hundreds of phone calls, emails and letters from women around Australia suffering from the same disorder. Now that Adriana's spoken up, they now have found the courage to come forward and talk about how their lives have been affected by this illness that has the medical profession baffled.

"The symptoms range from bloating, big fluid retention, but the bloatings the worst part and you get a lot of pain. You start off wearing a size 10 at the beginning of the day and by the end of it you can be up to a size 16" explains Adriana. Eve Rilatt has lived with a digestive disorder for the past twenty years, the former ballet dancer has always taken pride in her appearance. Her weight swings have become unbearable and her once flat stomach is no more. Eve has found strength and comfort in Adriana's brave confession about an embarrassing and awkward subject. "Its been a relief to know that I'm not the only person out there and that's what's prompted me to say hey Adriana, there are a lot of us out there I'm one" says Eve.

Dianne Hawkins is suffering too but not just from this chronic stomach disorder. She's frustrated by the medical profession's lack of answers for her condition which grows worse by the day. She believes that if a cure isn't found soon, it could be too late for her and others. 'I'm terrified, I'm scared. The stomach muscles are starting to split now and a big lump forms from the public hair line to the breast bone and its apparently parting the stomach muscles and tendons and sinuses' Dianne says.

"When I was 18 years old the pain started and I was back in Serbia then and the doctors there couldn't help me. I'm almost 30 years in Australia and I have that pain so often and no one here can help me" explains Vicki Ilicic. The sad news for Vicki Ilicic is doctors simply have no idea. Professor Terry Bolan from the Gut Institute says "its a very real phenomenon, there's no cure yet." While these brave woman wait for answers, they pray for a cure for this debilitating illness. They realize the only way to survive is to band together for support and find comfort in the fact that they're not alone.

"I know more than a dozen young women who have this condition, I work with them, and I see the desperation on their face and I see that they lose hope and they say to me I'm just having one of those gut days and we give each other a hug. I really hope the medical profession finds an answer to this sooner rather than later" adds Adriana.