Planning for Success
The average time to diagnosis for lipoedema is upwards of 14 years. That's 14 years of chronic inflammation and 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 slow 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.
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. Each step is set out as a lesson plus the tools you can use – work through them at your own pace.
Free Short Learning Program
Self-AdvocacyGetting To Diagnosis & Treatment Faster
Three short lessons and a printable workbook to get you heard sooner, build a treatment plan that fits your symptoms, and test treatments properly. It will only take about 20 minutes, and is completely free.
Start the Program- 1Research and Prepare
- 2Finding Your Care Provider
- 3Testing and Documenting Treatments
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.
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 consider an endocrinologist for hormone investigation/checks, a vascular surgeon for vein assessment, a lipoedema specialist/surgeon for surgical treatment options, a physiotherapist for pain/swelling/gait/muscle weakness.
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.
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.
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.
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.
Free Self Advocacy ProgramStart 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, I've included two Self-Diagnosis videos in the Tools section to the right. One by Dr David Amron, and one by Dr Karen Herbst - both from the Roxbury Institute, a leading lipoedema research and treatment facility.
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.
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.
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.
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.
Documenting Your Plan
With your research in hand, it's time to document your lipoedema management plan. This plan should outline your chosen treatments, lifestyle changes, and the timeline for implementing and reviewing them.
Create a Structured Plan
Document your plan in a structured format that includes your symptoms, goals, chosen treatments, expected outcomes, and review dates. This will help you stay organised and focused.
Share with Your Healthcare Team
Share your documented plan with your healthcare team. This will help them understand your approach and provide guidance where needed. It also ensures everyone is on the same page.
Videos, downloads and links for this step are on the way.
Test, Reflect and Adjust
The final step is to implement your plan, test the treatments and lifestyle changes, reflect on the outcomes, and adjust as needed. This is an ongoing process of refinement.
Track Your Progress
Keep a detailed record of your symptoms, treatments, and outcomes. This will help you identify what's working and what isn't, and make informed adjustments to your plan.
Be Patient and Persistent
Lipoedema management is a long-term journey. Be patient with the process and persistent in your efforts. Results may take time, but they will come.
Adjust as Needed
Based on your tracking and reflections, adjust your plan as needed. This might mean trying new treatments, modifying lifestyle changes, or seeking additional professional help.
Videos, downloads and links for this step are on the way.
You don't have to work this out on your own
New tools are added to each step as they become available. Join the group to ask questions, compare notes with others, and keep your plan moving forward.