Getting Diagnosed

If you suspect you have Lipedema, your first step should be finding a qualified doctor to diagnose you. I recommend starting off with a well known doctor or surgeon whose focus is diagnosing and treating Lipedema.

During your initial visit:

• Ask the doctor to tell you your type (I, II, II, IV, and/or V) and stage (1, 2, 3 or 4)

• Ask the doctor if you have any other closely related conditions such as lipomatosis, Dercum's disease, or Ehler's Danlos syndrome

• Ask the doctor to order bloodwork that checks for metabolic syndrome, hormone levels, vitamin deficiencies, and markers of inflammation such as C-Reactive Protein

• Request your doctor write prescriptions for conservative therapies such as:

  • • Manual Lymphatic Drainage (MLD) massage by a licensed physical therapist

    • At-home lymphatic pump

    • Compression garments for all affected areas

    • Any medications or supplements they may suggest for pain, swelling, venous issues, lymphedema, etc.

    • Specialized physical therapy for fibrosis if present, such as Graston therapy or deep tissue massage

• Ask the doctor for referrals to any additional specialists such as venous, nutrition, pain management, physical therapy, mental health, dermatology, neurology, etc.

• Ask the doctor to write you a Letter of Medical Necessity (LOMN) if their immediate recommendation is surgery, otherwise request this after 6 months of undergoing conservative therapies

After getting an initial diagnosis from an expert on Lipedema, begin following up with your primary care doctor and any specialists to inform them of your diagnosis of Lipedema and the plan for care. After you complete 6 months of conservative therapies, follow up with your PCP and specialists to see if they will write additional supporting LOMN that you can submit to your insurance company. The more medical professionals you have write LOMN recognizing your diagnosis of Lipedema and showing support for surgical intervention, the better.

Documenting Lipedema & Conservative Therapies

Most insurances will require you to complete at least 6 months of conservative therapies before they will even consider covering liposuction for Lipedema. You will need as much documentation as possible to show compliance with any doctor prescribed therapies for Lipedema and to use as a starting and ending measure to show your Lipedema was not improved or only mildly improved and still requires surgical intervention. In addition, keep records of any conditions possibly linked to Lipedema such as Lymphedema, venous conditions, arthritis, mental health issues, autoimmune diseases, and more. You want to paint a whole picture of your current state of wellness (or unwellness) to show that Lipedema affects you in a multitude of ways.

Keep a journal or calendar documenting:

• Consistent wearing of compression garments

• Use of an at-home lympatic pump

• Taking of any medications or supplements

• Any exercise or physical therapy

• Any use of special equipment such as a vibration plate or rebounder

Keep medical records from all treating medical professionals:

• 6-8 weeks of 2-3 weekly visits to a trained physical therapist for MLD and lymphedema wrapping if needed

• Nutrition counseling

• Venous treatments (such as ablation, sclerotherapy or vein stripping for venous insufficiency)

• Pain management (joint pain, muscle pain, cellulitis)

• Neurology (neuropathy, gait deformity, etc.)

• Physical therapy

• Mental health (body dysmorphia, eating disorders, depression, anxiety, etc.)

• Dermatology ( lipomas or cellulitis)

• Bone, joint & connective tissue conditions (osteoarthritis, osteoporosis, hypermobility, Ehler's Danlos Syndrome)

• Autoimmune conditions (hypothyroidism, vasculitis, multiple sclerosis, celiac, mast cell, etc.)

• Any urgent care or emergency room visits related to Lipedema or a linked condition

Additional potential documentation:

• Disability

• Activities of Daily Living worksheet

• Missed days from work, inability to work, or job loss due to inability to complete workload

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