Talk Lipoedema

Getting help with Lipoedema

Talking to others and making contacts

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.  Suggest that they look at this website, and talk to them about how they can help you.

Through Talk Lipoedema you can link with people in a similar situation through our social media, at our online sessions, or through our face-to-face activities. Please come and join us if you can.  Our conferences and roadshows are happy occasions where great friendships are made and rekindled.  The Talk Lipoedema private chat pages are also a supportive place to share your worries, get advice, and support others in similar situations.

Some people enjoy joining these support events, empathizing with others, sharing stories, and getting tips and advice. Others prefer to be more private. If you have mental health problems, such as anxiety or depression, you may find it difficult to make the initial steps towards others.  Remember, you are important. Knowing you are not alone can be empowering.

Talking with your doctor or other health care professional

When you think you may have lipoedema, it is important to see a health care professional who can provide a diagnosis, and signpost you to the appropriate support.  You may feel anxious about approaching your doctor, particularly if health care professionals have not been supportive about your lipoedema problems in the past.  Many health care professionals have not heard of lipoedema. We often hear that health professionals mistake the word you are using when you say lipoedema, and believe you mean lymphoedema.

Some tips for talking with your doctor or other professional:

  • Take a close friend or family member with you; they could take notes for you
  • Choose a GP who knows you and is easy to talk with
  • If you have weight problems, anticipate that the doctor may want to focus on this.  You might want to acknowledge that you have weight to lose and how you are working towards a healthy way of living
  • Avoid raising lots of issues in one appointment. Be realistic about what you can achieve in 10 minutes. Write down some points to discuss, or questions and concerns to refer to when in the consultation
  • Give them our Talk Lipoedema leaflet, tell them about our website (there is a section for professionals), or give them the GP letter of introduction available here
  • Don’t expect the doctor to read your mind. Ask for the help you think you need.

Getting a diagnosis

Getting a correct diagnosis for your symptoms is a first step to moving forward and living well with lipoedema. Most people are diagnosed by a GP, hospital consultant, lymphoedema practitioner, or other health care professional such as a podiatrist, physiotherapist or manual lymph drainage therapist.

Diagnosis is not always straightforward, and many health professionals do not feel confident about recognizing lipoedema. Sometimes lipoedema is complicated by weight gain and secondary lymphoedema.   If you have had lipoedema for a long time, it is possible that your weight has increased and oedema (fluid swelling) has also developed.  This makes it more difficult for a health care professional to understand the root of your problem.  Giving them information about any family history, the background to when your problems first started, and the length and complexity of your problems, such as chronic pain, can help in establishing the diagnosis.

What do I do if the NHS lymphoedema clinic will not see me?

Some NHS lymphoedema clinics are only able to see people who have swelling after cancer treatment. Since Covid-19, clinics may have a long waiting list. If you are not able to get an appointment you could consider:

  • Checking out Talk Lipoedema support services, online or face-to-face
  • Exploring other opportunities for support through leisure and physical activity services such as local walking groups or aqua-aerobics
  • Asking to have compression measured by a general practice nurse
  • Writing to your local NHS Board or Trust asking for information on what they offer to people with lipoedema.
  • Raising the lack of services with a local politician
  • Seeing an independent MLD/lymphoedema therapist who understands lipoedema.

Finding the right services for you 

Lipoedema affects people of different ages and genders. You are a unique person, with unique needs.  Understanding lipoedema, how it affects you, and prioritising what you need to do to improve your situation, are the first steps to taking control, and living well with lipoedema.

Seeing a practitioner who knows about lipoedema can help you prioritise what you need and where you can go for help.  Talk Lipoedema also have resources to support this process.

Somethings that you might want to consider and talk over with your GP or other professionals include:

  • What are your main problems due to lipoedema?
  • Are there physical symptoms such as pain, skin problems, heavy legs, or difficulty walking that you want to improve?
  • Has your weight increased and is this making the lipoedema more of a problem?
  • Do you have mental health problems such as depression, disordered eating patterns that are impacting on your life, making it more difficult to move forward?
  • What are your short, and long term priorities and goals?
  • What can you adapt in your work and home life to make things easier?
  • Where will you go to find out more?
What can I do to improve my lipoedema?

Talk Lipoedema support many people with lipoedema. We understand that it is a long term condition.  There are steps that you can take to improve your lipoedema, to avoid it becoming progressively worse.  These include:

  • Keep as active as possible, doing activities that you enjoy, and getting enough sleep at night
  • Learn about self-management techniques that can help with lipoedema including keeping your skin and lymphatics healthy, wearing compression, and healthy eating
  • Manage your weight, and avoid more generalized weight gain that can worsen lipoedema
  • Forgive yourself, as lipoedema is not ‘your fault’
  • Be body positive, finding ways to accept the beauty of your body
  • Share your thoughts and worries about lipoedema with others who will listen.
  • Get specialist advice if you feel you have more serious physical and mental health problems such as chronic pain, depression, or disordered eating habits.

Where can I find a lymphoedema clinic near me?

To find a lymphoedema clinic or practitioner in your area you can check the following resources:

NHS Lymphoedema services in Scotland: Lymphoedema Scotland

Manual Lymphatic Drainage UK (MLDUK): MLD UK

British Lymphology Society website: BLS

Talk Lipoedema does not keep an updated list, but some details of Scotland-based practitioners who see people with lipoedema can be found here: List of Services and Practitioners

Where do I go for help with mobility issues e.g. walking and getting into the bath?

In the first instance see your GP who can advise on mobility issues as well as signpost you to any relevant support, such as physiotherapy, or occupational therapy for functional support.  They may supply sticks, crutches, zimmer frames and sloping seats for sitting while working in the kitchen.  A podiatry referral can also be useful for gait issues.

In some areas you can self-refer to social care for physiotherapy or occupational therapy assessment for equipment or adaptations which can help maintain your independence. If you are under state pension age, with a disability that significantly impacts daily living, you may quality for a Blue Badge (parking) and/or Personal Independence Payment (PIP)

Where can I get advice on benefits?

Sometimes people with lipoedema find they have to change their work activities due to pain or difficulties with mobility.  If this happens to you, you may be eligible for Personal Independence Payment (PIP). Find out more information here:

Citizen’s Advice for England

Citizen’s Advice for Scotland

Citizen’s Advice for Wales

Advice NI for Northern Ireland