Patient Stories

We are grateful to all our members who choose to share their experiences of Lipoedema. The people featured on this page are the reason that Lipoedema UK remains committed to raising awareness of the condition. These personal stories are honest, heartening, inspiring and worth remembering! Do you have a story you would like to share? If you think your experiences might help other people searching for answers or reassurance, please visit our
share your story page.


‘Lucky to develop Lipoedema only in my later years’

I am now 77 and my Lipoedema was diagnosed in 2022. This photo was taken in December 2021. Symptoms like mine are not a family trait, and my problem only started to show post menopause, about 25 years ago. Prior to that I took the contraceptive pill for 23 years…

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Discovering Lipoedema while working as a therapist

Palliative care is my passion. It was a career I had always wanted to pursue after my beloved grandfather died of throat cancer all alone on a busy, general ward, miles away from home and the family who loved him dearly. I have always wanted to try and right that…

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‘Please, NICE, come and spend a day in my shoes’

The decision by NICE [The National Institute for Health and Care Excellence] that there is not enough evidence to provide treatment and support for this life-changing condition is wrong. Please, NICE, come and spend a day in my shoes. When I was diagnosed with Lipoedema in July 2023, it came…

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‘I feel safe in the hands of Lipoedema UK’

As a child, I was sporty, did a lot of Highland dancing and did suffer growing pains for a time. As a teenager, I went to the nearest academy, but at 12 or 13, I was off school for around three months because I was not feeling well (I did…

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Running the London Marathon for Lipoedema UK

Pai Masendu says the London Marathon is an experience she’ll never forget. Will she do it again? ‘If I manage to get liposuction, then I’ll consider another marathon,” she said. ‘But for now, I’ll stick to half marathons.’ Pai was diagnosed with Lipoedema after many years of being told she…

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‘This is your story and these are your legs!’

In my early teens, I was told by a consultant at St Thomas’s hospital that my ‘large and lumpy’ legs were just puppy fat, and that they would go ‘back to normal’ after puberty. They never did, and it wasn’t long before I was trialling every diet invented in my…

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‘My fat legs are not in fact my fault’

After being diagnosed with Lipoedema in 2011, Suzanne Evans set up Lipoedema UK with the support of Professor Mortimer and his team at St George’s Hospital. This is her story. In 1979, I was 14 years old and the dreadfully sexist single, Nice Legs, Shame About Her Face by The…

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Reflecting on Covid, working as a midwife, and Lipoedema

NHS Stars Series ‘Having had my second leg operation, I continue to wear full leg compression underneath my scrubs’ Last year consisted of a lot of change for me. I graduated from Brighton University with a degree in Midwifery, I was single for the first time in five years, and…

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‘Praying for a solution’

I was born in Johannesburg, South Africa, the middle child of three siblings. As I approached puberty, I noticed I had much heavier legs than my friends. I had been teased relentlessly at school about my ‘elephant’s legs’, and I found this very hurtful and, as a result, I didn’t…

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‘The life-changing results of liposuction’

Hi, I’m Jenny. I am 39 years old and I have Lipoedema. My first memory of feeling different was when I was 10 years old at primary school. A friend was carrying me ‘piggy back’ style around the playground when another friend said, ‘Urgh, put her down! Her big knees…

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‘I felt my legs were my responsibility’

Neither my friend nor I had seen legs like mine in 25 years of working in the NHS, and I now realise that it was because we weren’t looking for a medical condition. Over the years, I had become convinced by other medical professionals that the way my legs were…

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‘Get in the water. Feel the freedom and enjoy your life’

My name is Kathleen (Katie) and I live in the North East of England. I am Mam of three grown children and two grandchildren. I have Lipoedema, osteoarthritis, severe hypermobility, fibromyalgia, I’m a chronic asthmatic and I also suffer from depression. I remember as a teenager looking back at my…

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One family’s battle with Lipoedema

Catherine, Harriet and Rachel share their story Sadly, Lipoedema can run in families. Here, Catherine and her daughter, Harriet, share their battle with Lipoedema, and Catherine’s sister Rachel also gives a personal account of what it’s like to be part of a family where some members have Lipoedema, but she…

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‘My struggle to get a diagnosis and treatment’

My name is Anne. I am 47 years old and was diagnosed with Lipoedema in August 2017, around 30 years after I first noticed signs that my body wasn’t quite the same as the other girls’ the same age. Within those 30 years, I have visited my GP surgery on…

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‘I cannot give in’

I first noticed my legs were big as a teenager in school. Kids were cruel and I was called ‘thunder thighs’. Jeans didn’t fit and I couldn’t wear leggings like the other girls. I already felt ‘different’. This fact, coupled with other things that happened in my teenage years, meant…

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Supporting each other

Sharing the load by creating a support group Many of our members describe how they’ve found friendship and support by meeting other women with Lipoedema. This video by the Shuttlewood Clarke Foundation describes one such group of women, who have founded a Lipoedema Support Group in Leicestershire. Watch the video…

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