Lipoedema is a chronic, debilitating, connective and adipose tissue disorder that occurs almost exclusively in people assigned female at birth, with only a few cases reported in men with a hormonal dysfunction (Child et al, 2010). Lipoedema is characterised by a build-up of abnormal, excessive adipose tissue that develops on the buttocks, hips, lower limbs and sometimes, the arms. Its cause is unclear, but it is thought to be hereditary and associated with reproductive hormones, particularly oestrogen (Keith et al, 2021). The genetic composition of lipoedema is not yet fully understood, but there have been a few recent studies looking at gene identification specific to lipoedema (Grigoriadis et al, 2022; Michelini et al, 2022).
Evidence suggests that lipoedema is both poorly recognised and often misdiagnosed as obesity or lymphoedema (Kruppa et al, 2020; Lipoedema UK, 2021). Many women remain undiagnosed and go on to develop other co-morbidities such as obesity, joint problems and secondary lymphoedema. Historically, those who have received a diagnosis, receive this later in life. Inflammation, blood capillary fragility, lymphatic dysfunction, venous disease and the connective tissues disorder Ehlers Danlos Syndrome (EDS) may also be associated with lipoedema (Forner-Cordero, 2021; Chava et al, 2015).
Lipoedema manifests as a myriad of physical and psychological symptoms that can have a negative impact on quality of life (QoL) and everyday living for patients, sometimes leading to social isolation, job loss, financial hardship and severe disability in later stages (Lipoedema UK, 2021; Falck et al 2022).
The clinical presentation of lipoedema and differential diagnosis
There are currently no specific diagnostic investigations or tools for identifying lipoedema, and clinical diagnosis relies on taking a previous medical history along with a family history, physical examination, and a holistic assessment to gain differential diagnosis (Herbst et al, 2021). The national charity Lipoedema UK, have recently updated their health information leaflet ‘Can you distinguish between lipoedema, obesity and lymphoedema’ (Lipoedema UK, 2022). This leaflet is a useful tool for health professionals in differentiating between these conditions and with diagnosing lipoedema.
Lipoedema is a chronic fat disorder that mostly affects women and causes an abnormal build-up of fat cells (Figure 1). Unlike the normal fat caused by obesity, the abnormal fat build-up is often painful with an uneven appearance to the skin and subcutaneous tissues.
Although often confused with lymphoedema, there are clear differences. Primary and secondary lymphoedema can be identified by taking a thorough previous medical history, physical examination, or further investigations such as fluoroscopy or lymphoscintigraphy (Herbst, 2000). Unless there is secondary lymphoedema, a stemmer sign should be negative in lipoedema. In lymphoedema, this will be positive (Goss and Greene, 2019).
Hormonal and genetic factors are linked to the condition. The onset of symptoms can be a diagnostic clue, as lipoedema usually presents at times of hormonal fluctuation, with many women reporting that the onset of symptoms occurs around puberty, pregnancy and menopause (Katzer et al, 2021). In some cases, individuals with lipoedema can present with a combination of a secondary lymphoedema and obesity.
On clinical examination, waist is slim in the absence of obesity and the hips and lower limbs are disproportionally larger than the upper body (Figure 1). Many women will need to wear different dress sizes to accommodate their shape below the waist, often wearing three or four dress sizes larger for garments, such as trousers. Hypermobility and heaviness in the legs will affect mobility, gait, range of movement, and balance and have an impact on joints.
Due to capillary fragility, frequent bruising is often a trait of the condition. A cuffing or bracelet effect can also often be seen around the ankle (Figure 2) and can affect arms (Figure 3). Skin is soft and doughy in texture, rather than firm as in lymphoedema, and spider or varicosed veins can be present. Subcutaneous tissues are uneven, with sometimes a ‘mattress’ appearance to the skin and on palpating, small nodules are sometimes felt under the surface of the skin. Skin folds may be present in later stages.
The feet are not affected in lipoedema, this is a key characteristic to note and will aid differential diagnosis.
The psychosocial impact of lipoedema should not be underestimated with 97% of women reporting low self-esteem and confidence and a further 86% experiencing anxiety and depression (Lipoedema UK, 2021).
Some of the key signs, symptoms and characteristics of lipoedema are:
- Disproportionate distr ibution of abnor mal subcutaneous adipose tissue (SAT) to below the waist, affecting buttocks, hips and both legs and sometimes upper limbs
- Significant disproportion of hip to waist ratio—distorted shape to the lower body
- Little or no effect on abnormal SAT from weight loss diets/exercise/bariatric surgery
- Likely psychological distress anxiety and depression
- Low self-esteem and sometimes eating disorders
- Nodules or scarring to the subcutaneous tissues
- Pain to areas affected (but not always)—especially sensitive and increased pain on pressure
- Fatigue and tiredness
- Hypermobility and lower limb joint problems
- Easy bruising
- Feet are sparred with ‘cuffing’ or ‘bracelet’ effect seen in the ankle or wrist
- Fatty deposits medially to knees and lateral thighs
- Skin folds to upper legs and knees.
Classification of lipoedema
The UK Best Practice Guidelines on the Management of Lipoedema (Wounds UK, 2017) recommended the following classification, which was developed through a consultation and peer review process consisting of an expert working group of multidisciplinary members and individuals living with lipoedema. Lipoedema is classified into types (areas affected) and stages (severity):
- Type I: pelvis, buttocks and hips (saddle bag phenomenon
- Type II: buttocks to knees, with formation of folds of fat around the inner side of the knees
- Type III: buttocks to ankles
- Type IV: arms
- Type V: lower legs
- Stage 1: skin appears smooth. On palpation, the thickened subcutaneous tissue may contain small nodules
- Stage 2: skin has an irregular texture that resembles the skin of an orange (‘peau d’orange’) or a mattress. Subcutaneous nodules occur that vary from the size of walnut to that of an apple in size
- Stage 3: the indurations are larger and more prominent than in Stage 2. Deformed lobular fat deposits form, especially around thighs and knees, and may cause considerable distortion of limb profile
- Stage 4: lipoedema with secondary lymphoedema.
Lipoedema can also be classed as columnar or lobar, depending on the shape and presentation. Columnar refers to the enlargement of the lower limbs, which become column-shaped or cylindrical. Lobar refers to the presence of large skin folds or lobes of fat overlying enlarged lower extremities, hips or upper arms (Figure 4).
Conservative and surgical management of lipoedema
The management of lipoedema is focused on minimising symptoms rather than treating the enlarged adipose tissue and aims to incorporate a holistic approach in managing symptoms, promoting health and wellbeing, self-care and preventing progression (Wounds UK, 2017). Following assessment and diagnosis a referral can be made to a specialist service, such as the local lymphoedema service, although not all lymphoedema services are commissioned to see lipoedema patients and an ‘out of area’ referral may be required in this case.
The management of lipoedema falls into conservative and surgical options (Reich-Schupke, 2017). Both primary and community nurses will be ideally placed to initiate conservative management and give advice on self-care prior to a referral to specialist services.
Conservative management
Conservative treatments include a healthy skincare routine, physical activity, and pain and symptom management. Compression therapy will help with symptoms such as heaviness and discomfort with use of either a suitable well-fitted compression garment and/or intermittent pneumatic compression therapy device (IPCT). Compression bandaging or wraps may be required in secondary lymphoedema. Many women with lipoedema may also opt to wear support or sportswear leggings, which can help with symptoms and support the inelastic tissues. Medical lymphatic drainage (MLD) can also help with symptom management as part of a multi-therapy approach and has previously highlighted an improved QoL (Donahue et al, 2022). Referrals should be considered to psychological health and wellbeing services, weight management, nutritionist, gait management, pain management clinic, orthopaedics or endocrinology.
Surgical management
Liposuction is a specialist surgical treatment option that usually involves water-assisted or tumescent liposuction techniques to remove the abnormal buildup of fatty tissue. Although some women have had liposuction following an NHS referral, many find providers in Europe who specialise and have expertise in the procedure. The National Institute of Health and Care Excellence (NICE) (2022) has recommedned that liposuction should only be used in the context of research, but acknowledged that this decision will be reviewed when a randomised controlled trial being undertaken in Germany (LIPLEG), is published (Podda et al, 2021). Studies have indicated that liposuction has shown a positive impact on pain and other symptoms, resulting in an improved QoL for patients (Dadras 2017; Kruppa et al, 2022) (Figure 5).
The impact of living with lipoedema and quality of life
Lipoedema UK were invited by NICE to participate and comment on the proposed Interventional Procedure Guidance for Liposuction in Lipoedema (NICE, 2022). So, in May 2021 Lipoedema UK carried out a comprehensive QoL survey of 933 women to capture the views and experiences of individuals living with the condition (Lipoedema UK, 2021).
The results evidenced how lipoedema has a massive negative impact on both physical and psychosocial health and well-being as well as QoL outcomes (Table 1).
Table 1: Quality of life survey
| Area | Outcomes |
|---|---|
| Physical health | 91% had mobility issues with 79% reporting their overall mobility had been moderately-severely impacted96% experience fatigue95% stated that managing their weight was difficult and had a moderate-severe impact on their life and 70% stating that food choice was similarly impacted66% stated that they had difficulty with managing personal care activities such as getting washed and dressed79% stated lipoedema had a moderate to severe impact to general health100% (almost) expereinced pain, swelling, discomfort and heaviness in areas affected by lipoedema |
| Mental and psychological health | 86% reported experiencing mental health-anxiety/depression97% stated that lipoedema had a moderate to severe impact on their confidence97% experienced major issues with self-esteem87% stated that optimism about their future had been negatively affected by the condition |
| Work and socialising | 72% stated that their long-term carer prospects had been affected by living with the condition73% reported lipoedema affected their ability to work79% had difficulty with social activities76% stated that lipoedema had a moderate to severe impact on their ability to enjoy everyday family life91% stated that sex and relationships had been affected by lipoedema58% stating that their ability to manage everyday tasks such as shopping, or housework had been affected100% stated that they had difficulty with clothing, especially finding trousers, underwear and boots that fitted. |
Some authors have discussed how the ‘obesity bias’ in healthcare can have a negative impact on health management and outcomes (Talumaa et al, 2022) and this cannot be dismissed in the case of lipoedema. Many women in the study stated that they were not heard by their general practitioners (GP) or healthcare provider and dismissed, being considered to be obese from overeating rather than from lipoedema.
Earlier diagnosis and the role of primary and community nurses
The UK government's Women's Health Strategy for England (2022) highlighted that not enough focus is placed on women-specific issues, and that there is a lack of knowledge in health conditions that only affect women. In addition, access to services can be poor and fragmented. This is very relatable when considering the long-term condition of lipoedema, which affects an estimated 10% of women in the UK and worldwide (Kruppa et al, 2020). This figure is likely to be underestimated; evidence is lacking and further studies on prevalence are very much needed.
Although lipoedema was first recognised over 80 years ago (Allen and Hines, 1940), it still often goes unrecognised and misdiagnosed as obesity or confused with lymphoedema by many in healthcare. Lipoedema UK's (2021) QoL survey highlights the lack of recognition of the condition—48% of participants reported that although their first symptoms started at puberty, between the ages of 11–18 years old, 61% only received a diagnosis after the age of 40. 32% of these did not receive their diagnosis until after the age of 50.
This also highlights the massive impact lipoedema can have on children and young adults and their parents. Many women recall being taunted at school due to their body shape and ‘looking different’, leading to low self-esteem and confidence, psychological issues and eating disorders. Therefore, recognition of the condition by teachers, school nurses and GPs is key in early diagnosis, better management and improved QoL outcomes (Christoffersen and Tennfjord, 2023).
Community and primary care nurses are in a prime position to recognise this long-term condition earlier in women and to help manage the myriad of symptoms that can have a negative impact on QoL and everyday living, affecting work and family life. They can act as advocates in signposting, providing referrals to specialist services and in initiating conservative management for individuals with this challenging condition.
Improving knowledge and skills in lipoedema management
The Women's Health Strategy (2022) also highlighted the need for healthcare professionals (HCPs) to receive better education and training on women's health conditions, with an emphasis on education for GPs in particular, to enable the best health and care possible. Lipoedema UK developed the Lipoedema module ‘Royal College of General Practitioner (RCGP) training’, which can be accessed by GPs and HCPs. In 2022, a new Lipoedema training course for nurses and HCPs has been launched by the Lymphoedema Training Academy.
Lipoedema UK have an extensive range of information on their website and offer numerous leaflets and literature on the condition. Lipoedema UK have produced a valuable new updated version of their diagnosis leaflet ‘How to distinguish between lipoedema, lymphoedema and obesity’ (Lipoedema UK, 2022); this be a great tool to help with assessment.
Lipoedema UK also run a weekly Health and Wellbeing forum for members including health professionals. This offers peer and professional support, with numerous expert discussions and presentations, which are both informative and educational.
Conclusion
Lipoedema UK record a year-on-year increase in membership from women desperate to find out more about the condition and seeking advice. Social media platforms have also raised awareness of lipoedema for individuals. However, despite a marked increase in earlier diagnosis since the foundation of Lipoedema UK and other awareness-raising bodies, many women continue to express their frustration of being unable to get their symptoms recognised early by their GP or HCP due to the massive lack of awareness and knowledge in the NHS. Therefore, enabling nurses to recognise and diagnose the condition has the potential to be hugely transformative to lipoedema patients’ lives. Staff that work in midwifery or school health visiting are also in a key position to identify the condition.
With more than three quarters of the 1.3 million members of NHS staff being made up of women (NHS England, 2021), many HCPs are likely to recognise the condition in themselves or their colleagues.
The training and diagnostic tools are now available (see Further information and training below), but the whole healthcare community must work to increase awareness and to ensure GPs, nurses and healthcare practitioners have undertaken the RCGP training and are familiar with the differential diagnosis tool, to ensure they are able to recognise, diagnose and manage lipoedema. The management of lipoedema should incorporate a collaborative, holistic and an empathetic approach to care.
The Women's Health Strategy (2022) also stresses that women are under-represented when it comes to important clinical trials and it is clear that much more robust investment into further research is needed into this complex and challenging condition.