Patient Stories

For Lipoedema UK member Lisa, a sponsored naked swim was a fantastic way to fundraise and raise awareness of Lipoedema. ‘What better way to spread awareness and embrace and accept the way we are than by doing a naked swim?’ she says. ‘Swimming and moving in water generally are great…

I first heard about Lipoedema three months ago, when I finally got a referral to a local Lymphoedema Clinic. I had been suffering from swelling and chronic pain in my legs for 10 years, which I put down to a serious car accident that caused extensive injury and scarring to…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…