Talking all things Lipoedema

What is Lipoedema?

Lipoedema (also known as Lipedema or Lipalgia in the USA and Europe) is a chronic condition, that predominantly affects women. It usually begins around puberty, pregnancy or menopause. Changes may develop in the fat around the legs, hips, buttocks, and arms. The legs and hips may become larger and appear out of proportion with the rest of the body, as the waist and upper body remain smaller. Hands and feet may not be affected.

Learn More

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1%

It is estimated that 1% of the adult woman population has Lipoedema

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30K

That equates to an estimated 300,000 women in Scotland

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300,000

As many as 300,000 women may be suffering with Lipoedema.

Every message sent makes a difference.

Pop your postcode in the envelope above, and it will provide you with the details of your local MPs. Select which MPs you would like to be in touch with, and fill out the details on the form accordingly. If you would like, use the text below to draw their attention to problems faced in our community, but please write your name on the bottom or it won't be sent.

Contact your local Mp.

I hope this message finds you well. I am writing to you as one of your constituents and as someone living with Lipoedema—a chronic, progressive condition that disproportionately affects women and is too often overlooked within our healthcare system. Lipoedema is characterised by an abnormal and painful accumulation of fat cells, typically in the limbs. Far from being a cosmetic issue, it is a debilitating condition that severely impacts physical health, mobility, and emotional wellbeing. Many people with Lipoedema struggle not only with daily pain and fatigue but also with psychological distress, body image issues, and a widespread lack of understanding from both healthcare professionals and the public. One of the most pressing concerns facing individuals like me is the inconsistent access to care within the NHS. Diagnosis, treatment options, and follow-up support vary drastically depending on the NHS trust or specific Lymphoedema/Lipoedema clinic. This regional disparitu leaves many without appropriate or timely care and often results in misdiagnosis or the condition progressing unchecked, leading to further complications. Given the aims of the Women’s Health Initiative to address health inequalities and improve care for conditions that primarily affect women, I believe Lipoedema should be explicitly included in this agenda. Doing so would: •Raise awareness of Lipoedema among healthcare providers and the wider public •Establish standardised diagnostic and treatment guidelines across all NHS trusts •Promote further research into causes, early intervention, and effective therapies I respectfully urge you to advocate for the inclusion of Lipoedema within the scope of the Women’s Health Initiative. Your support as my MP could play a vital role in ensuring that people living with this condition—many of whom have felt ignored or dismissed for too long—receive the recognition and care they deserve. Thank you for taking the time to read and consider my letter. I would be happy to provide further information or speak with you in more detail should you wish to discuss this matter further.

Learn about Lipoedema

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Do I Have Lipoedema?

Lipoedema is a condition of the fat and connective tissue. It mainly affects women, and often starts to develop around late childhood, puberty or times of hormonal change. Most people first notice changes in the shape of their legs and ankles. Some possible signs of lipoedema may be fat tissue changes that alter the size and shape of the legs, buttocks, hip, tummy (abdomen) and/or upper arms.

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Getting Help With Lipoedema.

Whether you have recently been diagnosed with lipoedema, or have had a diagnosis some time ago, you are likely to find it helpful to talk with others about your situation. If you can talk with close friends and family, let them know about what you have learned about lipoedema and how it has affected you over the years.

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Find Out More About Lipoedema.

Medical science is still trying to understand lipoedema, and we do not know what triggers lipoedema to develop. There is some good scientific evidence from recent years of the genetic and epigenetic influences on lipoedema, linked to our family history, and how our environment affects us.

I have found my people. I am no longer alone.

Our aim is to support and empower you by providing trusted information for you, your family, and professionals on how you can live well with lipoedema.

Donate Today

“Thank you for saving me, because that's what I believe that it's done... It's almost given me a new lease of life”

Carol

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Find out more about...

Who We Support

Talk Lipoedema is a registered charity that is active across the UK. We provide information and support to people with lipoedema their families and carers online support groups. We also bring people together through our online activities and Lipoedema Lounge events, face-to-face local roadshows and national conferences.

We believe that education is key to empowering people with lipoedema and improving treatment and care. Talk Lipoedema also initiates and participates in various projects to increase awareness of the condition and improve research evidence.

Our Vision

We have a vision for the future that everyone with lipoedema will be given a timely, accurate diagnosis with access to an appropriate range of services and support with self management.

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Our Stories

Here are some real-life stories of women who have lived with Lipoedema. Read their stories to learn what life is like for those living with this condition.

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Skye's Story

Going through high school I knew I was a little bit different from everybody else in my year.

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Karen's Story

I have come a long way on my lipoedema journey in the last 6 months, in September 2021 I met Anne Williams from Talk Lipoedema and was finally given a diagnosis.

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Jenny's Story

I found I had lipoedema completely by accident!

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