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Clinical: living with lipoedema

18 March 2022

Symptoms often start in puberty, yet diagnosis may not happen until decades later. Increasing awareness of lipoedema can help to address this imbalance, writes journalist Julie Penfold.

Lipoedema is a body fat disorder that causes a disproportionate enlargement of a woman’s lower extremities. It is a relatively common condition, and while its prevalence is not fully known, it’s estimated to affect around one in nine women (Buck and Herbst, 2016). However, it can be confused with and mistaken for obesity or lymphoedema. The issue of late diagnosis in primary care can have a devastating impact on women’s lives.

‘Lipoedema is a fat and connective tissue condition where there is an increase in the size of fat cells, together with inflammation that develops around that,’ explains lymphoedema and lipoedema nurse consultant Dr Anne Williams. ‘There may also be other connective tissue problems happening that are not just due to changes in the fat cells,’ says Anne, who is also a trustee at the charity Talk Lipoedema. ‘Lipoedema skin is soft and
very, very pliable. It doesn’t have the same stiffness that you find in other skin conditions, and even in lymphoedema.

‘This change in fat and connective tissue is a distinct and usually symmetrical pattern that can lead to disproportionate shape between the upper and lower body,’ adds Anne. ‘Women will often be slimmer on top and they may have a smaller waist too. The first sign is usually a change in the lower leg or the shape of the ankle is lost. As time goes on, there is an increase at the ankles, around the knees and at the hips.’

A key way to determine whether a patient potentially has lipoedema and not typical cellulite is they are much more likely to have painful legs, advises Anne. ‘Cellulite is a difficult word as it is really just a type of fat. The upper body being disproportinately smaller than the lower body is a key characteristic of lipoedema. Whereas obesity is more evenly distributed in the body.’

Stages of lipoedema

There are four stages of lipoedema, although there are various ways that these are classified. Generally, stage one is where someone would first notice a change in their lower leg or ankle shape. ‘At stage two, you have the beginnings of the skin dimpling and there may also be some changes at the knee,’ explains Anne. ‘At stage three, there is a more obvious enlargement at the knee and further loss of leg shape. By stage four, lipoedema is reclassified as lipo-lymphoedema [lymphoedema that is secondary to lipoedema]. People may also have chronic oedema, redness on the legs and a history of cellulitis. In addition, some women will also have lipomas [harmless fatty lumps that grow under the skin] that you will be able to feel.’

Movement between the stages varies and some people do not progress from one stage to the next, so it is possible to have a mild form of the condition.
‘Often, the change can be triggered by life events, such as puberty, pregnancy, menopause and trauma,’ explains Anne.

Diagnosis is based on clinical presentation. Anne has noticed that more GPs are now recognising lipoedema. This could partly be due to increased public awareness as a result of the experience of Shaughna Phillips, a Love Island contestant in 2020. Shaughna received cruel taunts on social media while on the show because of how her legs looked. After learning, following the show, that she had lipoedema, she had 2.5 litres of fat removed via liposuction surgery in September 2020.

Awareness could also be growing as a result of an online course for GPs and primary care practitioners to improve diagnosis, treatment and management of patients presenting with lipoedema symptoms. The e-learning course was developed by the Royal College of General Practitioners (RCGP, 2018) in partnership with Lipoedema UK.

Chronic lipoedema

Lipoedema UK was invited last year to contribute to the development of NICE guidance on non-cosmetic liposuction in the treatment of chronic lipoedema. The final guidance will be published later this year (NICE, 2022).To provide insight, Lipoedema UK surveyed its members on non-cosmetic liposuction and other treatments (Lipoedema UK, 2021a). When asked about quality of life, 91% said they had mobility issues, and 79% said lipoedema had a moderate to severe impact on their general health. Almost all respondents experienced pain, swelling, discomfort and heaviness in areas affected by lipoedema.

When asked about how lipoedema affected their psychological health, 86% reported having mental health issues including anxiety and depression. And 97% said lipoedema had a moderate to severe impact on their confidence and self-esteem. Living with lipoedema also affected their ability to work and to enjoy social activities and family life. All respondents said day-to-day living is affected.

‘Our survey found the majority of women first noticed symptoms at the age of 11 to 18 but most didn’t get a diagnosis until 20-plus years later,’ says Kate Forster, a trustee of Lipoedema UK. Kate has personal experience of living with lipoedema as it has affected both her and her mother. While Kate has been able to treat her condition successfully through private liposuction surgery, her mother has had a far worse experience. ‘My mum got married at 19, had me when she was 20 and my brother at 23,’ Kate explains. ‘By the age of 30, she was unable to walk properly.’ But Kate’s mother wasn’t diagnosed until decades later, when her condition was at an advanced stage.

Kate’s symptoms began when she started puberty but she wasn’t diagnosed until her mother learned that she had it. ‘I was underweight until I hit puberty and suddenly became the right weight for my height. I had stretchmarks down the front and back of my thighs. They were very visible and I felt very self-conscious.’

There appears to be a strong genetic and hormonal link. Hormonal changes – during puberty, during and after pregnancy, around the menopause and while taking the contraceptive pill – can lead to the onset or worsening of lipoedema (Lipoedema UK, 2021b; NHS, 2020). Earlier diagnosis could help women have an informed discussion about finding the right contraceptive and lifestyle options that won’t worsen their symptoms, says Kate.

‘Although there is limited evidence around contraceptive management with lipoedema, our members’ anecdotal feedback is that chopping and changing contraceptive options can be unhelpful.’

In Scotland, charity Talk Lipoedema received confirmation at the end of 2021 that the Scottish Government will provide additional funding to further increase their support provision. Talk Lipoedema have also been tasked with developing a pathway for lipoedema care in Scotland.

Managing symptoms

Lipoedema has no cure, but there are ways to effectively treat and manage it to improve quality of life. Those with the condition should be encouraged to learn more about it, eat well, drink plenty of water and minimise their intake of foods that promote inflammation. Regular exercise can help to improve lymphatic drainage, strengthen muscles, maintain joint mobility and prevent weight gain. But when the legs are heavy and painful, keeping fit isn’t easy. Compression garments can be particularly helpful, says Kate. ‘Sports or medical compression clothing can help women to feel more supported and comfortable whenever they exercise.’


Characteristics of lipoedema

  • Almost exclusively affects females
  • Age of onset is usually 10 to 30
  • Family history link is common
  • Usually bilateral and symmetrical, without involvement of the hands and feet
  • Weight loss will be disproportionately less from lipoedema areas
  • Skin bruises easily, often with no known cause
  • Skin may have the texture of orange peel and have larger dimples
  • Skin is often painful and tender
  • Hypersensitivity to touch in the affected areas
  • Consistency of affected skin is soft, cooler and may also be looser.

Low-impact activities such as swimming, aqua classes, cycling, yoga and pilates are popular fitness options. Learning how to carry out self-treatments based on manual lymphatic drainage, a gentle type of massage, can also help to provide symptom relief. Keeping the skin moisturised is important and some women enjoy dry skin brushing, although care must be taken not to damage the skin.

When symptoms are more severe, liposuction may be needed. However, this might not be available on the NHS, and that’s why women such as Kate choose to go private. In 2016, 1.9 litres of fat was removed from her legs. ‘Surgery has hugely improved my quality of life,’ she says. ‘My balance has improved and my legs are no longer tender and painful. The only discomfort I get now
is during long car journeys.’

Some women also develop chronic pain and end up on medications such as gabapentin and various opioids long-term. Anne says it tends to be women who haven’t received much medical support and haven’t understood their condition, meaning it has worsened over the years. ‘People on strong pain medication need access to specialist services such as chronic pain clinics. But there can be a lack of understanding about lipoedema in external services and that can be difficult for patients,’ she says.

‘Community practitioners such as school nurses and health visitors can help by keeping lipoedema on their radar. They can also play an important role in signposting women who may have potential signs of lipoedema to get more information.’


Resources


References

Buck DW, Herbst KL. (2016) Lipoedema: a relatively common disease with extremely common misconceptions. Plastic and Reconstructive Surgery: Global Open 4(9): e1043. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5055019 (accessed 2 February 2022). 

NHS. (2020) Lipoedema. See: https://www.nhs.uk/conditions/lipoedema (accessed 2 February 2022).

NICE. (2022) Liposuction for chronic lipoedema. See: nice.org.uk/guidance/indevelopment/gid-ipg10190 (accessed 2 February 2022).

Lipoedema UK. (2021a) Non-cosmetic liposuction in the treatment of chronic lipoedema. See: lipoedema.co.uk/wp-content/uploads/2021/11/LUK-NCL-Bklt-Sept21-WEBv9.pdf (accessed 2 February 2022).

Lipoedema UK. (2021b) Hormonal changes: contraception, pregnancy, childbirth and menopause. See: https://www.lipoedema.co.uk/hormonal-changes-contraception-pregnancy-childbirth-and-menopause (accessed 2 February 2022).

Royal College of General Practitioners. (2018) Lipoedema an antipose tissue disorder e-learning course. See: https://elearning.rcgp.org.uk/course/info.php?id=146 (accessed 2 February 2022).

Wounds UK. (2017) Best practice guidelines: the management of lipoedema. See: wounds-uk.com/resources/details/best-practice-guidelines-management-lipoedema (accessed 2 February 2022). 

Image credit | Shutterstock | Science-Photo-library

 

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