‘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 as a complete shock. However, everything then started to make sense – the years of pain and discomfort, of hating my legs and of always being told I needed to lose weight. I am not aware of any family history of Lipoedema, but unfortunately I had to have a hysterectomy at the age of 32, and I feel this may have contributed. I do have other health conditions, which are managed with medication, but unfortunately Lipoedema is the one thing that impacts me the most.

Lipoedema has impacted me physically and mentally, and I am shocked that so many medical professionals seem to be unaware of this devastating condition and how it impacts those who have it. My friends are amazingly supportive, but they cannot understand my pain, mobility issues, lack of self-esteem, and the fact that I often feel totally useless with regards to what I cannot do anymore. They are suggestive with solutions and they mean well, but I often feel hurt by their suggestions. I am 57 and I don’t want to start using mobility aids or having carers.

I am a strong person and a problem solver, but Lipoedema appears to be stronger than me, slowly taking away my mobility, giving me pain and discomfort and often making me feel isolated. All of this impacts my mental health and self-esteem – I hate how I look and not being able to wear what I would like or even a nice pair of boots. I am single and, though I accept that I may not have a partner again because of my poor mobility, how I look really upsets me. Unfortunately, we live in a world where we are judged on appearances.

I am very concerned about my future and what it holds for me, which is not what I hoped. I have a beautiful dog and am reliant on others to walk her, because I cannot remember the last time I had a full day out, a good night’s sleep, or a day without pain. I am unable to work at the moment due to pain and poor mobility, and I miss my job as a support worker. I am trying so hard to cling onto “me”, but it is a struggle, especially with the lack of support and understanding from medical professionals.

I have prescribed surgical stockings, which sometimes feel beneficial but are awful to wear in the summer, and I am paying to have MLD (Manual Lymphatic Drainage), which is expensive so I am hoping it will help. But why should I have to go overseas for surgery for a long-term chronic condition and also pay for it myself, which would mean getting a loan? I truly don’t understand this, and I feel it is negligent that I cannot be treated in my own country by the wonderful NHS.

I am aware that this story reads negatively, but unfortunately Lipoedema without treatment and support from medical professionals is very negative. I live in hope that it is recognised as the chronic long-term condition that it is. A positive would be treatment in the UK – and other people actually knowing what Lipoedema is.

Scroll to Top