By Bronwyn Hastings

Endometriosis advocate Kelly Kennett now considers herself lucky – she has a team of four specialists treating her condition – despite remaining undiagnosed for eight years and visiting more than a dozen specialists.

She is passionate about endometriosis education and advocacy, which she is promoting this month – the annual Endometriosis Awareness Month. 

“There are so many women out there who are suffering in silence,” she said.

“Women who don’t have the courage to share their stories, who have been dismissed, who have been facing negligent care – and I think there are so many people out there still so uneducated about endometriosis.

“As someone who has been silenced for years, who has faced negligent care, who has gone through all of that, I am quite passionate to educate and bring awareness to it.”

As one in seven women who statistically suffer from the condition – and who take an average of seven to 10 years to be diagnosed – Mrs Kennett’s symptoms first presented when she was about 12 years old. She is now 23.

“We knew something was not quite right,” she said.

“I went to so many doctors and specialists, and at one point, I was being taken to hospital by ambulance every second day from Kaniva to Horsham, just to be told it was a bad period before being sent home.

“We ended up going to Ballarat where I saw a specialist for four years. I thought he was good –he was not. He actually ended up kicking me out of the room and asking my mum if my bleeding was actually real. 

“It was at that point I lost all hope that I would ever get a diagnosis.”

By the age of 16, Mrs Kennett had been diagnosed with polycystic ovary syndrome, but said she had a feeling it was endometriosis. 

“I knew something was really wrong, I was in pain and fatigued – some days I couldn’t get out of bed,” she said.

“At that point it was already starting to take over my life. I was hospitalised again before I was recommended a new specialist.”

Even with private health insurance, Mrs Kennett faced a two-year wait. 

“I was so nervous to see him – it was nerve-wracking – but I walked out feeling so heard, so validated, and the next day I was in for emergency surgery,” she said. 

“I woke up to the words: ‘Kelly, it wasn’t all in your head, we found endometriosis’. 

“So even being groggy and out of it, to hear those words was validation. 

“I just remember sobbing my eyes out – I finally knew what was going on.”

Diagnosed at 20, Mrs Kennett’s was a complex case. At stage four, it had spread to her lungs, diaphragm, kidney, liver, bladder, and had attached her right ovary to her bowel.

“If they had diagnosed me when I was first showing symptoms, they would have just been able to surgically remove it,” she said.

“But when they found it, it was in places that were inoperable.” 

Mrs Kennett’s medical team – based at Warrnambool, Ballarat, Melbourne and Hamilton – consists of endometriosis specialists, gynaecologists, haematologists, a urogynaecologist and pain management specialists. 

She was put into medical menopause aged 21, needs regular blood transfusions, has restricted fertility, and has developed interstitial cystitis, a condition stemming from endometriosis inside her bladder.

It caused incontinence and urinary tract infection symptoms, until it was remedied with the implantation of an InterStim device about 12 months ago, a nerve stimulator which acts like a pacemaker.

“It’s been life-changing for me – I’ve had no incontinence and no UTI symptoms, that’s been huge for me,” Mrs Kennett said.

 

“Until then, to have UTI symptoms and just even managing to try to talk about it as a young female, to say something was not right with my body, was really embarrassing.

“So many women go through this and they don’t talk about it because it is embarrassing.”

Mrs Kennett wants men to know more about the condition, and urged girls and women with symptoms to advocate for themselves.

“If you think something’s wrong, act on it – don’t be silent,” she said.

“For so long I was silent, I really did think it was all in my head because that’s how I was made to feel. 

“If you think something’s wrong, fight harder, go seek new specialists. It took me so many before I found one, but you will eventually find one.” 

Mrs Kennett said her surgeries to remove endometriosis were becoming more frequent.

 

“Because there’s stuff left there, it keeps growing,” she said.

“I had surgery in December, where they cleaned pretty much everything, but three weeks ago, I found out my ovary is attached to my bowel again.” 

Mrs Kennett’s mother, Sharon Carter, said she felt helpless watching her daughter endure chronic pain.

“All I want is to be able to take her pain away,” she said.

“My daughter is brave and strong, even though she might not feel that way, she battles through this chronic disease as best she can.

“As a mother, it’s heartbreaking to see Kelly go through this, but I know she’s a fighter and she will never give up, she’s shown much resilience throughout this whole journey.”

Mrs Kennett said her everyday was unpredictable – she has not been able to commit to regular employment, social outings or leaving the house.

“Some days I can feel great and not be in pain, but other days I’m riddled and can’t get out of bed and can’t function,” she said.

“It is hard and it has changed my life in every aspect – social, mental, physical. I’ve lost friends because of it. Lost jobs. Every way that you can think, it has impacted.

“It does define who I am as a person. I grieve the Kelly who I used to be.

“It makes me have limits, which I hate, but I’m navigating it, and I am really lucky I have such amazing friends and family and supporters behind me who are absolutely incredible. And I’ve got a diagnosis now. Finally.”

Medical bias

The State Government introduced Australia’s first-ever Inquiry into Women’s Pain in October 2024.

Led by Safer Care Victoria and the Inquiry into Women’s Pain Subcommittee, together with the Victorian Women’s Health Advisory Council and the Department of Health, it gathered insights from more than 13,000 women, girls, carers, healthcare professionals, peak bodies and researchers to unveil the experiences of girls and women with pain conditions and in accessing pain relief.

The inquiry showed medical gender bias and barriers in the healthcare system routinely led to denial or dismissal of pain, misdiagnoses or delayed diagnoses, and lack of pain relief and associated treatment for many women. 

Ninety per cent of respondents reported experiencing pain lasting longer than a year, and 54 per cent described living with pain every day, impacting mental health, employment, relationships, leisure activities and overall wellbeing.

The inquiry resulted in 27 recommendations across seven key areas, which would set a clear roadmap for reform and guide system-wide improvements to bridge the gender pain gap and ensure women’s pain was recognised, understood and addressed.

Sharing stories

Federation University is inviting women who have presented to emergency departments with severe menstrual pain – including endometriosis, pelvic pain and other period-related conditions – to be part of a new study.

It will explore women’s experiences of presenting to EDs, with a particular focus on interactions with nurses – often the first point of contact and central to assessment and ongoing care.

The study’s focus recognises the critical role nurses play in shaping patient outcomes and their unique position to influence how pain is understood, prioritised and managed in emergency settings.

PhD student Rebecca Peel said she hoped the study would help validate women’s experiences and drive improvements in how patients presenting with severe menstrual pain were assessed and treated.

“Too often, women with severe menstrual pain report feeling dismissed or not believed,” she said.

“This research seeks to improve women’s experiences – so that when they come into the emergency department, they know they’ll be taken seriously.”

In establishing her research, Ms Peel conducted a systematic review, examining research from around the world covering a 20-year span.

The review found women’s symptoms have been systematically dismissed and normalised as being part of the female experience, leaving many feeling let down by healthcare professionals, and, in some cases, turning away from western healthcare altogether.

The research is also seeking to understand the experiences of ED nurses who often navigate the challenges of providing care in environments where gendered assumptions can affect how women’s pain is perceived and treated.

Ms Peel said the study ultimately sought to challenge entrenched societal attitudes toward women’s pain.

“As women, we’re often just told to ‘get on with it’, but it’s not women who need to be tougher – it’s our medical system that needs to be better,” she said.

Women aged 18 years and older who have attended an emergency department for menstrual pain in the past 12 months are encouraged to participate in the study by sharing their experiences through an online survey.

Nurses who have cared for patients experiencing symptoms are also being asked to share their experiences via an online survey; both are available on Federation University’s website.

To learn more about Endometriosis Awareness Month, people can visit www.marchintoyellow.org.au.

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