For Lipoedema Awareness month, we hosted a very special photoshoot for women with Lipoedema. We photographed twelve women from Victoria, ranging in age and stages of Lipoedema. Many of these women confessed they were nervous to participate as they spend their lives trying to hide their legs, with some of their partners not even seeing their bare legs for decades. These women have bravely participated in the Lipoedema Awareness Photoshoot, despite all their fears, simply for the purpose of helping other women with Lipoedema to get better help. Our goal is to celebrate these women! In our photoshoot we aimed to provide them with a space where they could feel nurtured, safe, glamorous and beautiful – because they are! Please keep reading to learn more about these amazing women.
“As sufferers of Lipoedema, we need to speak up – women’s health is often neglected because the majority of decision makers are men, unless they have a loved one suffering they are clueless to what Lipoedema does as it progresses.”
How would your friends and family describe you? Passionate (sometimes stubborn), loyal and loves life.
When did you first suspect you had Lipoedema? After birth of my second child 8 years ago at age 40, I knew something wasn’t right, so did the medical professionals although no one could tell me what was wrong at that time.
How did you first learn about Lipoedema? I first learned about Lipoedema from a segment on the tv show The Project.
Can you describe what symptoms Lipoedema presented for you and how these may have changed over time from your first awareness/diagnosis? Following the birth of my son via C Section, I was in excruciating pain and my legs ‘blew up’. This continued for 4 months and my weight exploded by nearly 30kgs. My maternal health nurse said she had seen it before but didn’t know what it was, so advised that the pain would likely stop once I finished breastfeeding. Although I did stop breastfeeding not long after that, the damage to my legs was already done. It was about another 12 months before I found out I had Lipoedema. I managed to loose 20kg but now have about 10kg of Lipoedema tissue in my legs and arms, although I don’t experience pain.
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? I have had to learn to not push myself too hard physically, or over heat in hot weather. It’s also hard to get clothes to fit having a size 8/10 waist and larger legs.
What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view? Frustratingly, most medical professionals have never heard of Lipoedema and even when it is brought to their attention – many are ignorant and say it doesn’t exist. This makes it hard to have a clear, overall medical history and if Lipoedema is not part of the picture, understood and taken into account – medications resulting in weight gain could be prescribed.
What words of support or hope can you share with women living with Lipoedema? We never asked for this, so we must keep advocating for ourselves and educating ourselves. We must do everything possible to lose all non-Lipoedema excess weight and keep it at bay, this allows us to stay active and keep our mobility. Remember just as symptoms and triggers present differently, so do lifestyle changes and treatments. What works for one may not work for others, stop dieting educate yourself on proper nutrition.
What do you wish you knew at the beginning of your Lipoedema journey? I wish I knew that opinions would be wide and varied on how people view Lipoedema.
What’s something that people often don’t know about Lipoedema? Lipoedema is not always hereditary, you don’t always have pain and bruising and you can’t always feel it. Symptoms are wide and varied, likewise, the onset is not always same.
Why do you think it’s important to advocate for awareness of Lipoedema? We need to get a definitive test developed so there can be no disputing someone has Lipoedema. There also needs to be standard treatment and management guidelines for medical professionals to follow. As sufferers of Lipoedema, we need to speak up – women’s health is often neglected because the majority of decision makers are men, unless they have a loved one suffering they are clueless to what Lipoedema does as it progresses. Unless you are diagnosed and receive treatment early on, your mobility quickly becomes diminished.
What do you hope to achieve on your Lipoedema journey from here? I am hoping to remain active and keep fibrous at bay, as well as hoping and praying menopause doesn’t cause further progression. Surgery is an option but logistics with a young family limit my ability at this point in time.
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? It’s been exceptionally hard to accept that there is nothing that will prevent Lipoedema, and ultimately little that will prevent overall Lipoedema progression.
What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view? Health wise, my biggest struggle is sore, heavy legs. Legs that bruise after going to the gym or having a dance on a night out. I’m 26, my legs shouldn’t feel like this. There is also a mental wellbeing struggle which comes from suffering from low self-confidence. I feel really confident about myself generally speaking, but the Lipoedema-affected parts of my body are what keeps nagging at that insecure part of my brain. It’s a struggle to find clothes that fit, that’s often a hard hit on self esteem as I’m 3 sizes smaller in tops than jeans – jeans will fit my waist but not my legs and I can’t wear boots because my calves are too big.
What words of support or hope can you share with women living with Lipoedema? Your lipoedema does not define you. Your body does not define you. YOU define you.
What do you wish you knew at the beginning of your Lipoedema journey? I wish I knew how overwhelming my Lipoedema journey would be. I still haven’t found a GP who is accepting new patients AND who knows anything about lipoedema. I am also concerned about the costs of treatments. I wish I knew my pain and heaviness would get worse, before I’m even 30, although there is some great virtual support out there via social media groups and pages.
What’s something that people often don’t know about Lipoedema? There is no cause for Lipoedema – it’s not caused by being overweight, having other conditions or illnesses, or any other reason – except perhaps genetics. Lipoedema hurts and it is hard to live with. Most of us cannot afford to do anything about it because it’s not covered by Medicare, or even private health insurance. This needs to change.
Why do you think it’s important to advocate for awareness of Lipoedema? There is such little information out there about Lipoedema for both the public and health care providers. For both of those cohorts, there is still fatphobia which impacts opinions on Lipoedema – a condition which treatment should not be based on fact, not opinion. Any woman, no matter their circumstances, including weight or other co-morbidities, can have Lipoedema. We need to make treatment accessible for everyone, this includes massage, compression, surgeries, etc. I am now considering undergoing surgery overseas as it is more affordable than having surgery in Australia, although I don’t want to do this, I don’t see any other option. Surgery for Lipoedema is not cosmetic – it is a necessity to provide a better quality of life.
What do you hope to achieve on your Lipoedema journey from here? I hope to bring awareness about Lipoedema to both the medical community and the public, as well as advocating for further research and funding.
“It’s such a difficult thing to learn that you’re living with a chronic incurable illness, but to know I have gotten so far in life and achieved so many great things despite physical setbacks really makes me proud of my resilience.”
How would your friends describe you? Bright, funny, energetic, caring and inspirational.
“Lippy women are strong and tough and resilient and capable of so much against the odds!”
When did you first suspect you had Lipoedema? I’ve suspected I’ve had Lipoedema for around 2-3 years now.
How did you first learn about Lipoedema? I was diagnosed by a colleague, whom is also a specialist nurse.
“The more awareness there is of Lipoedema, the more people can seek support and start to heal.”
“It’s not your fault. You can’t stop it. You can’t fix it. It’s a real disease that genuinely destroys lives. I feel sometimes people think we are crazy and are making it up.”
How would your friends and family describe you? Before my Lipoedema worsening, leading me to seek a diagnosis, they would have said I was a loud, bubbly, curvaceous but petite woman who is always upbeat and never stops working hard. Now, I think they would say I have become more reclusive, quiet, and feel as though I am defeated a lot of the time. Not how I used to be.
When did you first suspect you had Lipoedema? I first suspected around age 9-10 when I gained a lot of weight and my legs went from ‘normal’ size to large. Kids and even family started teasing me about my big legs and bum well into highschool.
How did you first learn about Lipoedema? I always knew something was going on with my body. I asked doctors many times – only to be told it was just my body type. Once, I lost a lot of weight and got down to 42kg and my body shape still hadn’t changed. I started googling, researching, trying to find what it could be. I came across Lipoedema via a google search and from then on I looked into support groups and medical pages. I knew I had always had this disease the moment I laid eyes on those pages.
Can you describe what symptoms Lipoedema presented for you and how these may have changed over time from your first awareness/diagnosis? My first symptoms as a child were stress related weight gain. I can track my first noticeable change to being 8-9 years old when my little brother had cancer and my parents had a nasty separation. From then on I was the chubby kid. I couldn’t get boots, pants, anything to fit and I felt out of place. Over time I started to accept that this was my body. I wasn’t too worried about it as a child or teen until I was picked on and bullied for my body. I started noticing my hands and feet would swell while exercising or at high altitudes. I noticed that no matter how much I changed my diet or exercise I always looked like this and was always in pain. Fast forward to 2019 I found myself in an abusive relationship while pregnant, this is where it really got worse for me. While pregnant I started swelling in weird places now too like the back of my neck and my eyelids. This never went away. I still have a puffy neck hump and lymphatic issues in my face now. After leaving that relationship with a newborn baby I went through COVID lockdowns and home schooling my older child all on my own. Lost my job. Didn’t eat the right foods. High stress. I gained 20kg and my Lipoedema EXPLODED. I have definitely found a direct correlation with stress and with eating a lot of inflammatory foods like
wheat, sugar and dairy.
Do you recognise these symptoms in your family members? I believe all of the women on my mothers side. It makes sense now that some of us who were very into gym and eating well still could never lose weight on the arms and legs or the little belly pouch.
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? The more trivial issues are that I have never been able to wear boots or strappy heels because they don’t do up over my huge ankles. I Haven’t been able to buy skinny jeans or anything tight even as a child. Until I gained weight in lockdown my waist was a size 6 and my legs were a size 14. It looked weird and I was never able to dress myself because I have always struggled clothes shopping. I feel self conscious everywhere I go, knowing my body doesn’t look right, feeling as though people are judging or making fun of me. It changes your self confidence and it’s a constant daily battle.
What are the main challenges that Lipoedema has presented from an overall health/wellbeing point of view? I’ve never been able to go for a run, jump on a trampoline, even climb stairs without pain. Even as a child. This has greatly impacted my efforts trying to stay fit and healthy. I developed an eating disorder and became very restrictive at around age 22. Seeing foods as either ‘good’ or ‘bad.’ I banned myself from eating bread, pasta, anything from an animal or anything processed. I did lose a fair bit of weight and swelling but that mental state has stayed with me ever since and I still see good in that way. It means that even though I eat a very clean Mediterranean based diet and nothing processed I am still gaining weight and my disease is worsening while I see others eating junk food and staying slim. The way that makes you feel on the inside is indescribable. You feel jealousy, hopelessness and anger.
What words of support or hope can you share with women living with Lipoedema? The only hope we have is one another. It feels as though no matter what we do for our Lipoedema, there will always be pain and struggle and mental health issues. We will always have this support network of amazing women and medical professionals though, who are so kind and understanding. If you think you or someone you love may have Lipoedema I urge you to find a support network as this disease is excruciatingly painful, depressing and lonely at the best of times. There are treatments you can do to help, however they are costly. I personally have not been able to have any yet due to having children on my own and being on a low income. I prioritise my childrens diet and health now so that they don’t struggle as much later.
What do you wish you knew at the beginning of your Lipoedema journey? I wish I knew how many women REALLY suffer with this. At first I thought I was alone, but there’s thousands of us.
What’s something that people often don’t know about Lipoedema? It’s not your fault. You can’t stop it. You can’t fix it. It’s a real disease that genuinely destroys lives. I feel sometimes people think we are crazy and are making it up.
Why do you think it’s important to advocate for awareness of Lipoedema? It’s important for me personally because I never knew. So many women never knew and that frustrates me. Even though we beg for help and answers we are constantly turned away and gaslit and told we are just fat or eating too much salt or that it’s our natural body type. Each turn I took hoping this would lead to an answer I found that nobody I saw cared that a young woman was experiencing pain or felt like something was wrong in her body. They still don’t. The medical world is notorious for minimising womens issues. It’s important that this next generation don’t find out after it’s too late. I see some women who can’t walk, they are wheelchair bound or even bedridden due to Lipoedema. It shouldn’t have to get to that point. Somebody should have helped them. Thanks to Dr. Lekich and his team Aussie women now HAVE someone who will listen and help us. They need to know this help exists.
What do you hope to achieve on your Lipoedema journey from here? I hope to connect with other women with Lipoedema so we all have a support network full of people who truly understand us. I hope that one day I can afford therapies and surgery and this disease will be recognised by Medicare so that I don’t need knee and hip replacements or lose my mobility. Currently you can get weight loss surgery and cosmetic breast surgery covered by Medicare but you cannot get assistance for removal of fibrotic Lipoedema tissue. I hope to show other young women what Lipoedema looks like because you may not even know you have it. I hope that one day I can find a journey for myself that leads to a long and healthy life and not one full of pain and suffering because my current mental health has been destroyed by trying to manage this every day. I hope that I can raise awareness and share my story with the world and that the stigma of being fat and lazy is no more. I hope that my two daughters can look at their mothers changing body and believe that she is still beautiful. I hope my girls don’t have Lipoedema, but if they do, I hope that one day the world is kinder to them than it was to me…and that they know they are beautiful, strong and supported.
“I want to advocate for the Government to recognise Lipoedema, as treatment needs to be subsidised by Medicare. For local GPs, awareness needs to be raised for diagnosis.”
How would your friends and family describe you? Family orientated, outgoing and stubborn, a true Taurean.
When did you first suspect you had Lipoedema? In Feb ‘21 my lower left leg was very swollen and bruised, so I made an appointment with a new doctor, as my doctor was on leave. This doctor was the one who said to me it may be Lipoedema and handed me a print out of Lipoedema symptoms. I had never heard of it up until then.
How did you first learn about Lipoedema? When researching about Lipoedema I found Dr Lekich’s clinic and made an appointment in Melbourne in early 2022. It was very helpful to have my diagnosis confirmed
at that appointment.
Do you recognise these symptoms in your family members? I have no family history or other family members with Lipoedema symptoms.
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? My lower limbs swell, are painful to touch and bruise easily. I also find it difficult to walk now like I used to.
Why do you think it’s important to advocate for awareness of Lipoedema? I want to advocate for the Government to recognise Lipoedema, as treatment needs to be subsidised by Medicare. For local GP’s, awareness needs to be raised for diagnosis.
“Yes, Lipoedema feels debilitating and painful, where giving up almost feels easier than pushing through, but you will get through it because you are more than the condition.”
How would your friends and family describe you? My friends and family would describe me as “sparkly”. They would say that I am like an energizer bunny that enjoys having a good time and packs a million things into her days. They would say I thrive in chaos and am drawn to fixing problems. I am calm under pressure and love order and structure as much as I value spontaneity in my life. They would see me as a committed, ambitious, professional, a loyal friend, loving wife and parent. They would also mention that I love all things sequins, love the colour gold, can’t get enough of RnB music to which I can dance till I drop!
How did you first learn about Lipoedema? I only learnt about Lipoedema after being diagnosed a few years ago. Until then, I was under the impression that I had an extreme case of cellulite and uncontrollable fat deposits on my legs. My gut always told me there was more to it, that my legs looked different to someone that had just gained weight, but the lack of awareness meant I persisted to diet and exercise as a way to lose weight and make my legs look less bulky and more “normal”.
What words of support or hope can you share with women living with Lipoedema? I would encourage anyone going through life with Lipoedema to remember how resilient you are. Yes, Lipoedema feels debilitating and painful, where giving up almost feels easier than pushing through, but you will get through it because you are more than the condition. You are so much more! Learn about Lipoedema, seek medical support and connect to communities such as these that have empathy and understanding of what you are going through. Above all else, do what feels possible to take back control from a mental, physical and support perspective… sometimes the despair can snowball and give us a sense of helplessness. Taking back control in whatever little way you can, will give you the confidence to bring back normality into your life one step at a time. You’ve got this!
What’s something that people often don’t know about Lipoedema? People often associate Lipoedema with being overweight or obese. It’s not simply a matter of ‘eat less, exercise more’ to manage Lipoedema. It is a condition that affects women of all ages, sizes, demographics. I wish more people knew what Lipoedema is and what causes it so that they would be more empathetic with their own bodies and those of any loved ones experiencing this condition.
Why do you think it’s important to advocate for awareness of Lipoedema? On the most simple level, I advocate for Lipoedema because I wish I knew of it before my diagnosis. The years I spent subjecting myself to fad diets, spot treatments, rigorous exercises etc to try and “lose the weight” when all along it was a condition that silently existed under the guise of what I thought was “abnormal fat pockets” “extreme cellulite”. I remember feeling despondent that my legs didn’t look like anyone else’s legs I saw online or in the media… or even in my family. If I was aware that Lipoedema existed, I may have sought a medical opinion much much sooner. Having my diagnosis was like a weight was lifted off my shoulder. It gave me the validation that I wasn’t broken or faulty and that there was hope to live normally while respecting and working around the limitations of my condition. I felt so relieved not having to be at war with my body but instead learning acceptance and eventually love. Lipoedema education and awareness is so important as it can affect women in all walks of life. Early diagnosis and management can make a huge difference by working “with” the condition rather than “against” it. Lipoedema awareness is important so that women can trust their gut and champion for a proper diagnosis themselves. Women are already dealing with so much stigma on so many levels, hopefully by spreading awareness of Lipoedema I can play my part in removing the shame and embarrassment that is often associated with this condition. Awareness, attention and action can help minimise discomfort and maximise quality of life through this journey. It took me years to go through this steep learning curve due to lack of awareness. I am hoping that the part I play in Lipoedema awareness will speed up the process of discomfort to diagnosis for someone else like me!
What do you hope to achieve on your Lipoedema journey from here? I hope that over time I can truly love my body for what it is, and how it looks at every stage of my journey. Education about the condition, connecting with like minded “lippy ladies” and learning to work alongside Lipoedema in my daily life has been truly empowering for me. I refuse to let the condition dictate what I can and cannot do, so I nourish my body sensibly, prioritising some form of enjoyable movement and stay in a “solution focused” mindset surrounded by people who love me for exactly who I am (lumps and bumps included). While surgery seems inevitable for me in the near future, I’m doing my best to stay comfortable and confident in the meantime.
“Awareness is important so women don’t do the same things I did, so women can get a diagnosis and management of this disease. So they are no longer stressing their bodies and minds to the absolute limit.”
When did you first suspect you had Lipoedema? I first suspected I had Lipoedema at the end of 2021/start of 2022. I started anti depressants mid way through 2020 and noticed a significant increase in my weight. At that stage, I had gained about 25kgs in 1.5 years. By 2.5 years I had gained 35kgs. Most of that weight has accumulated in my legs. My legs have always been bigger in proportion to the rest of my body, but they kept growing and the difference in proportion was easier to see, not just by me but by my family as well. The pain was always there but has also increased with the weight gain. My sister and I discussed it and did some research which led us to Lipoedema. After learning about Lipoedema and getting my diagnosis, everything finally made sense.
Do you recognise these symptoms in your family members? I remember when I first researched Lipoedema and saw that there was a link between the disease and genetics. This made me question whether I had Lipoedema at all as my sisters, mum, aunties, and cousins all have very slim legs. I did some digging and found that on my dad’s side of the family, there may have been so me undiagnosed cases, but no one actually knows for sure. If you are questioning whether you have Lipoedema and you don’t see symptoms of it within your family, you should still book in to see a specialist, I almost didn’t and I’m super grateful that I did.
Why do you think it’s important to advocate for awareness of Lipoedema? I think it is so important to advocate for awareness of Lipoedema because it affects so many people in the world, and most of these people are not even aware that they have the disease. There are young girls who believe that they are obese, or just need to eat less or train harder when in fact there’s no amount of training or eating (edit: calorie restricted dieting) that can change Lipoedema fat. It is causing eating disorders, depression, anxiety and so much more. I spent years trying to lose the fat off my legs, years of being unhappy in my body, an d comparing myself to everyone around me. I was never able to fit into jeans, pants, skirts, or shorts and I thought it was my fault. I overtrained and underate. I was told I was lucky to have the curves that I do. All of this was completely unhealthy for me, not only physically but mentally. Getting my diagnosis has had such a profound effect on me and I’m grateful that I’m no longer putting my body through all that stress to achieve something unachievable. Awareness is important so women don’t do the same things I did, so women can get a diagnosis and management of this disease. So they are no longer stressing their bodies and minds to the absolute limit. Lipoedema awareness is important for the health of women physically and mentally. It’s important that women know they are not alone with this disease, and we can manage the symptoms of it.
“It’s not your fault! You’re not lazy! And weight isn’t the most important thing it’s about being happy with the body you have and embracing those curves.”
When did you first suspect you had Lipoedema? I always knew that I was different, it was during puberty though around age 11 that my legs got much bigger than that of all my friends and my younger sister. It was especially obvious to me at dancing classes. I was small up top but my butt and thighs were big. Then during pregnancy aged 31 my legs got even bigger. Throughout my life no matter how much weight I’d lose my legs and bum were always big. I had 2 varicose veins surgeries to try and reduce the pain and heaviness in my legs, neither of those two specialists mentioned that I could have Lipoedema . The pain, heaviness and swelling in my legs continued even after those surgeries. I found out about lipoedema doing a google search when I was 45! I told my GP about it but she didn’t know what it was and thought I meant Lymphodema . I kept searching and about 2 years later I found a physiotherapist who immediately diagnosed me with Lipoedema and Lymphodema and I commenced the conservative management journey with her help and support.
“However, having a community and seeing people share their Lipoedema journey makes it all feel a lot less lonely. Success stories and case studies also help motivate and keep the hope alive as well.”
How would your friends and family describe you? While I’ve always struggled with my weight and legs I first suspected I had lipoedema in early 2020 right before covid started. I was 8 months into a super strict health journey I gave myself in 2019; exercising 6 x a week, eating a low carb/inflammatory diet, sleeping 8hrs, water etc. All of this just so I could finally slim down my legs as they’d always been a problem for me. After months of consistency, my face was slimmer, I had a slim waist and abs, andoverall extremely healthy…except my legs and my arms did not change in size. I was so heartbroken and thought “surely I’m not the only one struggling with this” After a good google search, and deep dive through instagram , I found Dr. Heck in Germany which then led me to Dr. Lekich and Walk With Freedom, where I finally booked in for a consult and got my diagnosis.
“I wish I knew I had Lipoedema earlier on in life, and also that I was educated about it earlier. I would have done so many things differently, and maybe even continued with my basketball.”
What are the main challenges that Lipoedema has presented from an overall lifestyle point of view? I used to play basketball for the state at an eleite level, until I realised around age 13 that my legs were so much bigger than the other girls, they were also sore. I didn’t understand because I trained 5 x times a week. Eventually, I stopped playing althogether because despite my slim body, my legs were big and I sensed people staring at me.
emotions. On one hand I felt relief, but on the other I feel as though there’s nothing I can do to help myself. I’m only 29, I’d love to feel confident in myself and enjoy my life now.