Planning for Success
The average time to diganosis for lipoedeam is upwards of 14 years. That’s 14 years of chronic inflammation an disease progression.
Having a plan for how you will find the right healthcare team, get to a diagnosis and manage your lipoedema can get you on the path to treatment faster, and slowing down disease progression.
I defined a five step process for my diagnosis and treatment journey, before I even saw a doctor. Each step had outcomes and goals to be achieved, to give myself the best possible chance of getting rapid diagnosis and treatment to slow disease progression.
I’ve documented my process below, to help you get to diagnosis and treatment faster. The five steps aren’t necessarily always ‘linear’ – you may find yourself moving ahead to Step 2 whilst still waiting on parts of Step 1, and that’s ok. There’s a lot of information on this page – work through it at your own pace.
STEP 1
Defining Your Healthcare Team
Lipoedema is a complex condition that requires a multi-disciplinary healthcare team, which can be challenging with so few lipoedema-aware medical professionals in Australia. Especially early stage lipoedema – the signs aren’t always easily recognisable. It took 3 experienced specialists to get my diagnosis, because my symptoms weren’t as ‘obvious’ as a Stage 3 or 4 patient.
When a specialist appointment is $450+ (last price I paid in Sydney, 2024), seeing doctor after doctor to find someone who understands lipoedema can become extremely costly. Thorough research and planning to identify your preferred healthcare team at the outset allows you to keep control of costs throughout your diagnostic journey, and knowing in advance who you want to be referred to keeps you moving towards fast diagnosis and treatment.
- Research Your Team in Advance
Is your GP lipoedema-aware? Or are they dismissive of lipoedema? I think the single most important thing to consider at this first stage is whether you are willing to spend time trying to educate your physician, or whether you prefer to get fast diagnosis and treatment from a physician who is experienced – or at least curious and open.
Once you have a GP who can diagnose you (or is willing to refer you to specialists for diagnosis and treatment), you’ll want to have your specialist team already identified. Your GP may (ideally) consider an endocronologist for hormone investigation/checks, a vascular surgeon for vein assessment (if you have spider/varicose veins appearing), a lipoedema specialist / surgeon for surgical treatment options, a physiotherapist for pain/swelling/gait/muscle weakness.
All of these specialists are also able to diagnose lipoedema if your GP isn’t confident doing so but it’s crucial to find specialists that are already experienced with lipoedema.
If you’re serious about getting fast diagnosis and treatment, don’t skip this step – doctors can’t know everything about every disease, and whilst we wait for the medical community to come up to speed with lipoedema, it’s up to us to take the lead and define our own care team.
- Tap Into the Power of Community
Use social media groups to ask for recommendations for healthcare professionals in your area. By tapping into the collective knowledge of others, you can streamline your search and find the right team to support your journey. Here’s three Facebook groups that I’ve found to have a wonderful supportive community:
- Communicate Proactively
Reach out to potential healthcare providers in advance to inquire about their experience with lipoedema, before you book an appointment with them. A brief phone call or email can help you gauge their knowledge and willingness to treat the condition, potentially saving you wasted time and money. This proactive approach allows you to prioritise your time and focus on specialists who can provide the care you need, and to spend your money where it’s going to get you results.
STEP 2
Getting to a diagnosis
Many women with lipoedema start with self-diagnosis, and go on to receive a clinical diagnosis later. This is what my path looked like. By the time I’d reached clinical diagnosis, I was already up to Step 5 of my process – testing treatment options.
To get to diagnosis, you need to understand your symptoms, gather essential information and advocate for yourself, to ensure you receive the care you deserve.
- Be Your Own Advocate
This was the single most valuable and impactful thing that I did during my journey to diagnosis and treatment. Your health is in your hands – be proactive in seeking a diagnosis. Don’t hesitate to ask questions, seek second opinions, and advocate for yourself. Remember, you are the expert on your own body.
- Start With Self Diagnosis
Self-diagnosis is a very common starting point, due to the lack of lipoedema-aware doctors. There are so many resources available for self-diagnosis so I’m not going to reinvent the wheel – instead, here’s a couple of links to two fantastic self-diagnosis videos: ‘Self-diagnosing lipoedema’ by Dr David Amron, and ‘What to Expect’ with Dr Herbst.
- Write up Your Health History
Compile a comprehensive health history including your symptom timeline, medical records, and any relevant test results. Doing this accelerated my time-to-diagnosis, by giving each doctor a detailed picture before I even walked in their door. All but one of my specialist clinicians read it. For those that read it, we spent the valuable appointment time on deeper questions, investigation, discussion and planning instead of spending the whole appointment with me reciting my 12+ year symptom history.
The added benefit of recording your history is accuracy – the human memory isn’t always reliable, particularly when it comes to details. Writing things down ensures that you are conveying an accurate picture to your clinicians.
If you’re not sure where to start, download and complete the Lipoedema Symptom Checklist by Lipoedema Australia:
STEP 3
Researching Treatments & Lifestyle Changes
When researching treatments and lifestyle changes, I found so much information that I wondered where the ‘there’s not much research’ narrative was coming from. It didn’t take me long to understand that despite there being a lot of ‘sources’ of information, many were saying the same few things, many share information that’s based on anecdotal evidence (this isn’t inherently bad – it’s likely a symptom of the lack of empirical evidence), and many clinical papers, literature reviews and case studies end with the statement: ‘we believe more research is needed on this topic’. You have to dig deep, and sometimes you may need to use research that is very early stage and perhaps doesn’t have robust protocols to follow, or strong outcomes yet.
If you need some help getting started, I built a Research Library to share the information that I found to be the most useful.
- Prioritise Your Symptoms and Goals
Identify your high priority symptoms (e.g. pain, swelling, or non-lipoedema weight gain) and focus on addressing them first. This targeted approach will give you some direction in your research, and will help you achieve quicker results and improve your overall quality of life.
- Document Everything
Keep a detailed record of your research, including information on potential treatments, lifestyle modifications, and the sources of your information.
Not only is this documentation going to form the basis of your lipoedema management plan, it will serve as a valuable reference for future consultations with healthcare providers and help you track your progress over time.
- Use Credible Sources and Critical Evaluation
As you research treatment options and lifestyle changes, it’s important to rely on credible sources. Consult with healthcare professionals, join reputable online communities, and refer to evidence-based studies and credible literature reviews. By using critical evaluation skills when you’re researching, you can make informed decisions about your health and well-being and reduce the risk of wasting time or money.
I found anecdotal evidence to be quite common in lipoedema sources, and also conclusions / assumptions made based on similarity to other disorders (e.g. lymphoedema). Don’t disregard these scenarios – the evidence may not be empirical, but it’s often these scenarios that are the catalyst for empirical studies, so they have value. Just keep a balanced view.
STEP 4
Building Your Lipoedema Management Plan
Creating a sustainable plan is key to long-term success in managing lipoedema. This step guides you through breaking down your goals into manageable steps and prioritizing your approach.
- Go Through The Prioritisation Process Again
I assessed all of the lifestyle changes and treatments that I wanted to trial against a criteria of:
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- criticality
- likely impact
- speed of impact
- expense
- time required
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This helped me to prioritise my list. I prioritised those that were high criticality and high impact – i.e things like nutritional changes that were likely to have a high impact quickly on things like pain, swelling and reduction of inflammation. I introduced one new change per week because I was in a hurry, and I also had the time available to focus on my treatment program.
When you’re prioritising and building out your schedule, consider things such as:
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- Cost and Feasibility: What changes are realistic and
- affordable for you to implement?
- Potential for Quick Wins: Which changes are likely to
- provide the fastest relief?
- Symptom Impact: Which symptoms bother you the most?
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Build New Habits Gradually
Trying to do everything all at once is overwhelming and it reduces your chances of success. Lipoedema management is a long game. I kept reminding myself, ‘It’s taken me 30 years to build up this inflammation and lipoedemic tissue. So it’s going to take some time to undo it’.
Work out a cadence that works for you and build in new habits or treatments gradually, for example:
Month 1: Introduce compression.
Purchase compression garments and wear consistently 4 days per week (M/T/W/T) for one month.
Month 2: Introduce high-protein, low-carbohydrate diet for one month and track changes/symptoms.
Month 3: Eliminate high-histamine foods from diet for a 3 month period and track symptoms/changes.
This gradual approach allows you to adapt and adjust as needed, making the process more sustainable.
Break It Down
Once you’ve got your priorities scheduled, break them down into smaller actions and goals. For example, changing your diet requires more than just waking up one day and eating differently – ideally you need to identify which foods you need to replace, what foods you should replace them with, and which metrics you need to consider / track. Trialling compression solutions is also a set of actions – research compression brands, decide which ones you’ll trial, find an MLD therapist locally, decide whether you are going to purchase a rebounder etc. Breaking each priority down in to smaller actions (and documenting the actions) gives you a clear, unambiguous plan to follow and reduces stress and anxiety.
STEP 5
Test, Reflect and Iterate
I have found that continuous testing, learning and adjustments are essential for effective lipoedema management. What works for some lipoedema patients may not work for you, and vice versa.
I trialled four diets before landing on an eating plan that works for me in a sustainable way – keto, high protein low carb, anti-inflammatory, and low-histamine diets. Even though it took some time (the better part of a year!), each one of those trials gave me a valuable outcome – whether it was learning that a particular food group was causing pain/swelling, or learning the value of tracking macros. Everything you trial is valuable if you do it in a structured and methodical way.
Integrate New Habits Into Your Daily Life
I like the process of ‘habit-stacking’, which I learned from the Atomic Habits book by James Clear. He coaches the reader to stack a new habit on top of an old one – for example, if you are introducing new lipoedema supplements to your regime, ‘stack’ this on top of an existing daily habit (e.g. after eating breakfast). Or perhaps you are introducing daily skin brushing, so you might ‘stack’ this new habit into the 2 minutes before you get into the shower. This technique helps with making the new habit easy to integrate, and ‘sticky’.
Create a habit tracker template (or download a simple printable template below) and use it to list your new daily habits and tick them off each day for a month. By the end of the year, you’ll have a record of every small action that you’ve taken each day to help your body heal.
Use Tools To Help You Succeed
There are a number of tools (e.g templates, apps) that you can use to help you implement, track and manage your lifestyle changes and treatment outcomes. I used a combination of apps and spreadsheet templates, for everything from organising research through to calculating macros and tracking symptom changes and leg measurements. A great place to start is a food tracking app – these can calculate and track macros (protein, fats and carbs), making it easy for you to make sure you’re applying your nutritional /dietary changes accurately.
Keep Documenting Outcomes
Documenting results is so important, not only for our own benefit but because it also produces detailed records that are invaluable for communicating your symptoms and challenges to doctors. It also gives clarity around when a treatment /lifestyle change is or isn’t working – our memories are rarely reliable enough to base this decision on.
A simple way to record outcomes is in a spreadsheet – create a tab called ‘In Progress Treatments’, a tab called ‘Successful Treatments’ and a tab called ‘Unsuccessful Treatments’. Your ‘Successful Treatments’ tab becomes the basis for your Lipoedema Management Plan.
If you’re not a fan of spreadsheets, you can download this simple printable Pain & Symptom Tracker:
Not sure where to start?
The beginning can be overwhelming, I’ve been there. Whether you’re yet to be diagnosed, or you’re having challenges working out which lifestyle changes to trial, I can help you build a plan for lipoedema diagnosis and management.