Sturdy Woman

I am one of the lucky ones. I first learned about lipedema from a doctor. She diagnosed me the same day I learned it was a thing. Most patients do things in the opposite direction. They learn about lipedema, then try to find a doctor to confirm their suspicions. Some of the most frequent questions I get are about finding a doctor who can diagnose lipedema.

Traditionally, this been a long and difficult process, but today’s post is designed to give you a head start.

How long does it take to find a doctor?

The Lipedema Foundation First Look Report has some sobering statistics based on its patient survey:

• On average, patients sought medical attention 17 years after first noticing lipedema symptoms
• Once they engaged with the medical system, it took an average of 10 more years to get a diagnosis

That’s a 27-year delay in getting treatment! Diagnosing lipedema early and starting to manage symptoms with conservative treatments can slow its progression.

Today, I’m sharing four resources that will give you a head start and may help you significantly reduce that timeline. You can also do a lot on your own to start feeling better while you work towards a formal diagnosis. My conservative treatment playlist outlines some things that have helped me.

Resources from the Lipedema Foundation

Within the past year, they launched a directory of diagnosing clinicians and therapists. As of today, it includes over 300 medical providers in the United States. It’s growing rapidly, so check back regularly if you don’t see any providers in your area yet.

If you already have a great doctor or therapist, help the community by asking them to join the registry! You can also recommend them directly to the Lipedema Foundation, and someone will contact their office to confirm their participation. All the information for doing that is on their website.

Besides the directory, the Lipedema Foundation has great resources. Check out their Patient Self-Advocacy Guide to help you prepare for your appointment and advocate for yourself during the visit. They also have a page dedicated to finding a lipedema specialist. It will help you understand the types of providers patients sometimes include in their lipedema care team. Finally, the Lipedema Foundation provides a list of other directories. Check these if you don’t find a provider near you in their directory. (Scroll about halfway down the page to the Finding Treatment heading.) These include Klos Training, the Vodder School, and The American Board of Venous and Lymphatic Medicine.

Klos and Vodder both train lymphedema therapists, but such therapists can help with manual lymph drainage massage and compression fitting. They may also be familiar with lipedema because of their training on the lymphatic system.

Lipedema Project Provider Directory

First, its database is global, so it includes providers outside the United States. Second, patients contribute the data and, unlike the Lipedema Foundation directory, there is no verification. This means providers might not know they are listed. I’ve heard of patients calling to make an appointment and having a negative experience. So be aware of that when reaching out.

Social Media

Post in large groups like Lipedema Sisters or Lipedema Warriors and ask for help. Also, look for a geographical group that includes your area. These may require a little more digging, but I’ve include some examples in a resource sheet for this post. Let me know if I missed one that you are in. I’m happy to add it!

Social media may be a particularly useful way to find a doctor outside of the United States. I found patient groups in Brazil, Egypt, India, Turkey, the United Arab Emirates, Portugal, and others. Vary the spelling – lipedema vs. lipoedema – and language to find even more.

My one caution about social media, is to use it for what serves you and let go of what doesn’t. I learned a lot from other people’s posts at the beginning of my journey. I also found some posts frightening and depressing. Remember, you control what you let in your feed, and your thoughts will mirror what you expose them to.     

Find a Sympathetic Doctor with an Open Mind

The first is the Lipedema Foundation Clinician’s Guide to Lipedema. You can download it from their website or request printed copies for free. It includes frequently used medical codes, symptom information, and links to resources like the Standard of Care. It’s a great resource to give out along with the free lipedema brochures.

The second resource is the book Lipedema – the Disease They Call Fat – An Overview for Clinicians. It is designed to walk providers through the steps of diagnosing lipedema and includes a lot of helpful background. The paperback costs about $30 on Amazon but makes a great gift for your doctor. I always keep a few on hand, especially for Lipedema Awareness Month in June.

Summary – TL;DR?

Getting a lipedema diagnosis and finding a lipedema specialist can be a long and frustrating process. Thankfully, organizations are coming to our help. The Lipedema Foundation provider directory includes over 300 specialists in the United States. The Lipedema Project provider directory rounds up patient recommendations from around the world. If neither of those are helpful, try connecting with other patients in your area through Facebook groups. My resource guide for this post includes a list to get you started. If you still can’t find someone, use this free resource and this book to train any open minded doctor.

Your Turn

Let us know how you found a doctor or got a diagnosis. What tips do you have for other patients? What do you wish you had known sooner? Sharing your experience helps others in our community.