Kehani White’s endometriosis diagnosis leaves her without options

A young Hunter mum has been left with internal organ damage from endometriosis so severe she is unable to eat. With her body breaking down, she’s desperately seeking to stay alive for her nine-year-old son.

Kehani White and her son Hudson, 9.

Kehani White was just 19 when she was formally diagnosed with endometriosis.

She used to love art, building furniture for her young son and designing tattoos.

Now 35, she has undergone around 30 surgeries, had a full hysterectomy, and lives with what doctors describe say is “stage five” or “terminal” endometriosis.

Her pelvis is now classified as “frozen” – with her organs so heavily fused together by scar tissue, she has had to stop eating just to function.

“It feels like I’m being told the only option left is to starve,” Ms White said.

Ms White once managed a respite and disability support centre, helping other families access the care she now desperately needs.

Kehani White and her son Hudson, 9.

The single mother, who has fled domestic violence and now cares full-time for her neurodivergent son who has autism and ADHD, has nothing like the care she needs.

“Endometriosis is when tissue grows (on organs) outside the uterus, which then attach themselves to other organs,” she said, explaining the condition.

Kehani White

“Doctors tell me that there’s nothing to be done, if I have surgery I’ll have more scar tissue because my endo grows back so rapidly,” Ms White said.

“It’s just pain management now.”

Professor Steve Robson, who is involved with the National Endometriosis Taskforce, is one of Australia’s most distinguished medical specialists with more than 35 years of clinical experience.

He said endometriosis is essentially “cancer”.

“One women in nine in Australia will find out she has endo and if it’s not recognised, it can have catastrophic results,” Professor Robson said.

Kehani White and her son Hudson, 9.

“Endometriosis is incredibly common and under-diagnosed.

“It is a disease that can be more difficult to treat than cancer, as endometriosis tissue sticks everything together.”

Professor Robson helped establish the National Endometriosis Taskforce under then-Health Minister Greg Hunt in 2018.

He discussed how it is “undervalued” as “endo is dismissed as a minor women’s issue, when it’s a life-altering, even life-threatening disease”.

“Thousands of women face years to get the correct treatment,” Professor Robson said.

Professor Robson shared that the condition is difficult as “unfortunately, endometriosis is dismissed as a minor woman’s problems but it’s anything but, it’s a life-threatening condition”.

“Endometriosis is aggressive and if not managed well, it destroys lives, leaves women unable to work, impacts relationships and need to throw everything as a community to support it,” Professor Robson said.

Kehani White and her son Hudson, 9.

For Ms White, the disease has not only devastated her body – it’s slowly unravelling her ability to care for her son.

“Everything I do is to give him a good chance at a decent future” she said.

“But I don’t know how much longer I can keep doing it without help.”

Even after diagnosis, Ms White’s care was inconsistent and often delivered in a dismissive fashion.

She was sent home from hospital after surgery, despite a scan showing an active pelvic bleed.

“On my results it said I had an active bleed in my pelvis, but they didn’t tell me,” she said.

“By the time I got a friend to drive me to hospital it was the size of an orange, meaning I needed another emergency surgery.

“I’ve passed out from pain, I’ve vomited from pain, I’ve lain on the floor on a supermarket in pain.”

Professor Steve Robson.

Despite this, she says a leading endometriosis specialist told her pain management was the only remaining option.

“I had a female doctor tell me that she had endometriosis too and she’s fine and I just need Nurofen,” Ms White said.

She has tried to access help through the NDIS and Carer Gateway, but says the system often falls short.

The main thing that is keeping Ms White going is her desperation to know her son will be looked after for long enough that she can go find help.

“I’m starving,” Ms White said.

Her friend Sarah Keevers organised a GoFundMe to help Ms White find a doctor that can help and “to be a mum for a little while longer”.

Keevers said Ms White had “endured more pain than most people could imagine”.

“I’d move mountains if I could, I didn’t know what else to do,” Ms Keevers wrote.

“It’s a brutal, incurable, and almost entirely invisible illness.

“And while her body is slowly shutting down, her heart is still holding on – for her son.”

Originally published as Kehani White’s endometriosis diagnosis leaves her without options