14/10/2025
An estimated 10,000 Territory women have lipoedema.
I have advanced stage 4 Lipoedema.
It’s too late for me to benefit from any conventional therapies so I am fighting for the 10,000 Territory women who are carrying this genetic disease and need diagnostic and treatment pathways to ensure they don’t arrive at stage 4 like I did.
Lipoedema is a progressive genetic disorder which comes in stages, each with worsening severity. I am at advanced stage 4, which is almost completely immobile, and I find myself totally let down by the NT medical system. I would like to change this situation for those other 10,000 women.
Lipoedema is a chronic disorder of adipose tissue that impacts 11% of all women (and occasionally men), causing pain and mobility issues as it advances over the years.
Driven by oestrogen, it often rapidly progresses during puberty, pregnancy, and menopause. The condition results in disproportionate adipose tissue around the hips, buttocks, and sometimes the upper arms.
It is often mistaken for obesity, as they look similar, but at a metabolic level they are vastly different. For instance, lipoedema adipose tissue does not respond to diet, exercise, fasting, or even bariatric surgery.
Lipoedema is not caused by overeating or laziness. Lipoedema tissue does not metabolise during exercise or calorie deficit like fat does.
Importantly…
• Lipoedema is not obesity.
• Lipoedema is not lymphoedema.
• All three conditions require quite different treatment pathways.
Lipoedema sufferers continue to be discriminated against, blamed, and shamed by medical professionals.
Lipoedema is frequently misdiagnosed or overlooked amid the global obesity epidemic, leaving women untreated and with feelings of self-blame.
Lipoedema is not your fault; it is genetic and has deep evolutionary roots. Some researchers believe it developed early during the Ice Age, when strong growth of adipose tissue around the hips and buttocks helped keep the womb warm for a baby to grow, even in freezing conditions.
This tissue resists fasting or dieting, preserving reproductive conditions during times of famine. While this adaptation may have been advantageous for our ancestors, it is not advantageous in modern conditions.
Historical medical records document lipoedema in European royal families, showing clinical presentations centuries ago.
Ancient artefacts depict women’s bodies clearly showing patterns of lipoedema, demonstrating that this is not a new condition.
It affects an estimated 11% of women globally and is recognised by the World Health Organisation, yet it is not included in the NT Women’s Health Policy. The Northern Territory has no treating physician, no diagnostic pathway, and no clinical awareness training among health providers.
11% of adult females in the NT equals around 10,461 adult women potentially affected by lipoedema.
These 10,461 women are right now at various stages of the condition, and it is likely that most remain undiagnosed due to the lack of awareness in the Northern Territory and the complete absence of qualified GPs to diagnose or treat lipoedema.
My own experience with RDH was humiliating and left me reluctant to dare ask for any more help after the judgement and dismissal I encountered from medical professionals.
You cannot reverse lipoedema without surgery once it has advanced to stage 4. It is absolutely crucial that women are able to be diagnosed at stage 1 and receive early intervention, with conservative therapies put in place immediately for those women.
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Current Gaps in the Northern Territory
• No Recognised Specialists – No physicians or clinics in the NT are trained to diagnose or manage lipoedema. I have found a spectacular ally in Meghan Williams (In Balance), who is a lymphoedema specialist, not a lipoedema specialist.
Meghan used a Zoom call with colleagues and advice from a lipoedema surgeon down south to diagnose me, but NT patients remain without local specialist support.
• Limited GP Knowledge – General practitioners often misdiagnose or fail to recognise lipoedema. I’ve personally been offered treatments and drugs that are contraindicated for lipoedema and even dangerous to my health.
• Lack of Policy Recognition – Lipoedema is not currently included in the Northern Territory’s key women’s health policies or reports, such as the NT Women’s Health Policy and the NT Gender Equality Action Plan 2022–2025. This omission highlights a gap in recognition and awareness of the condition within official health frameworks.
• No Formal Referral Pathway – Many GP practices, including my own, do not have lipoedema listed in their database of conditions, forcing my GP to incorrectly select lymphoedema — a completely different condition requiring entirely different treatment pathways. This contributes to misdiagnosis, delays in care, and inappropriate treatment.
• Limited Local Treatment Services – While compression therapy and lymphatic drainage exist in the NT, no providers are specifically trained in lipoedema management, and early intervention therapies tailored for lipoedema are not widely available or coordinated.
• Surgical Options – Tumescent or water-assisted liposuction (WAL), performed by trained lipoedema surgeons, can remove pathological adipose tissue, relieve pain, and restore mobility. Surgery is not available in the Northern Territory, and interstate treatment is costly, often not covered by Medicare or private health insurance.
• Telehealth Limitations – Telehealth options are expensive and cannot provide surgical or post-operative care.
• Interstate Surgery Challenges – Travel, accommodation, surgery, and follow-up care are costly, logistically difficult, and not adequately covered by Medicare or private insurance.
• Early Intervention Impossible – Without trained clinicians and pathways for diagnosis, women often reach Stage 4, as I did, before receiving a diagnosis, now limiting my treatment options to expensive surgery interstate.
• No Public Awareness or Stigma Reduction – Lack of awareness campaigns leaves women shamed, misunderstood, and unaware of their condition, preventing early diagnosis and treatment.
• My Lived Experience – I have personally experienced the consequences of these gaps: I underwent a radical sleeve gastrectomy where I had the majority of my stomach removed, lived for years under strict calorie restriction, and was severely depleted of nutrients, leaving me now with crippling osteoporosis and osteoarthritis because of decades of malnourishment — all while untreated for lipoedema.
Early diagnosis and intervention would have prevented much of the physical and emotional damage, and the shame of feeling that I was failing even as I starved my poor body, yet it was impossible in the NT context.
10,000 women in the NT are currently at some stage of lipoedema. If we can get conservative treatments for those women in the early stages, that will mean a significant reduction in the impact on our health system as those women age before they get to stage 4.
Once you advance to stage 4, there is no treatment that will reverse the progress of that growth of lipoedema tissue. It has to be caught in the early stages.
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Proposal
To improve outcomes for Northern Territory residents living with lipoedema, I propose:
1. Fund lipoedema awareness training for NT health professionals, developed in partnership with national experts and patient advocates.
2. Establish at least one treating position within Royal Darwin Hospital or a community health setting, focused on diagnosis, conservative management, and referral coordination for surgical care.
3. Develop a Territory-wide referral pathway to ensure GPs can identify and refer patients accurately. This gap contributes to misdiagnosis, delays in care, and inappropriate treatments.
4. Support research and data collection to better understand prevalence, outcomes, and treatment efficacy in the NT population.
5. Fund a public awareness campaign to promote early intervention and reduce shame and stigma among sufferers.
6. Put pressure on the federal government to include surgical options for lipoedema on the Medicare schedule, ensuring affordable access to effective treatment.
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Expected Outcomes
• Earlier, accurate diagnosis and improved patient outcomes.
• Reduced misdiagnosis and inappropriate obesity-focused interventions.
• Lower long-term healthcare costs by preventing disease progression.
• Improved mental health, quality of life, and mobility for affected Territorians.
• Equitable access to specialised care for women in the Northern Territory.
I would love to be part of an awareness campaign and would happily offer my body to be used to help train local positions in diagnosis, because there is no blood test. It has to be done clinically, and you need to know what to feel for.
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Conclusion
Lipoedema is under-recognised, under-diagnosed, and inadequately treated in the Northern Territory. Investing in training, awareness, and one dedicated treating position would provide tangible health benefits, reduce inequities, and position the NT as a national leader in compassionate, evidence-based women’s health care.
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