Tips
- If you know or suspect you have lipedema find a doctor who knows what it is
- Don’t give up
- Search lipedemafoundation.org for a doctor as close to you as possible
- Be prepared to travel for a diagnosis
- Educate your PCP on the disorder
- Print off materials you find online to share with your providers
- Know that surgery is not the right choice for everyone
- Scour the Facebook groups to learn about surgeons you might consider
- Interview your surgeon- ask questions about their experience. YOU ARE IN CONTROL
- If surgery is not an option for you (medically or financially) do not give up on your body
While on vacation in Phoenix, I was lucky enough to snag a last-minute cancelled appointment with Tina Fisher, NP in Dr. Herbst’s office, in Tucson. (That office closed in April of 2020) On September 15th 2019, Ms. Fisher diagnosed me with stage 1, borderline stage 2, lipedema. She said that it was obvious that I had done a really good job of taking care of myself, since it had not progressed further. She also told me I was an excellent candidate for liposuction—the most effective treatment for lipedema. She also prescribed a Flexitouch pump, MLD/wrapping, and custom compression.
I dismissed the idea of surgery, as it didn’t seem feasible as the mom of two toddlers, but proceeded with her other recommendations.
I got the pump in October of 2019 and used it as often as possible, but didn’t notice any changes to my body.
(It’s important to note here that I have worn medical grade compression since 2013 because of lose fat/skin from drastic weight loss of 164lbs.)
Because of the holidays, changes to our insurance, and then Covid-19 restrictions in early 2020, it was June before I was able to get in for my first Manual Lymph Drainage (MLD) therapy appointment.
At my evaluation, the Occupational/MLD Therapist looked at my body and said, “I don’t think this is going to help much. I think liposuction is your best option. Have you considered that?” I told her about my concerns with being a stay at home mom and recovery and blah, blah, blah…she understood, and proceeded to treat me with MLD and wraps.
It turned out that the appointments 3x per week coupled with wearing the wraps was even more cumbersome than I had expected. The wraps made it impossible to chase after my kids, or take them places, or do much of anything as I was nearly immobilized by the bulk of them. I felt like the Micheline Man, and constantly struggled to keep them from falling off my cone shaped legs.
With two recommendations for liposuction from health professionals who understood lipedema, I went back to the Facebook groups and read everything I could find on the various procedures, surgeons, and to learn about other women’s experiences.
I learned about the handful of surgeons in the United States, as well as others overseas. I learned that lipedema had been issued an official diagnostic code in early 2020 and that Aetna and Blue Cross Blue Shield had recently started covering liposuction for lipedema after a lawsuit in California. (The women in those Facebook groups are serious about this disorder, and really know their stuff!)
Because of Covid-19 I wasn’t willing to travel beyond driving distance, so I decided to consult with Dr. Byrd at the Lipedema Surgery Center in Roswell, GA as her office is about a 5 hour drive from my home just north of Charlotte, NC.
I contacted her office, filled out the paperwork, sent photos in early July, and had a phone consultation with her. Based on my photos and medical history she determined that I’d need 6 surgeries.
1 lower leg (below the knees)
1 front of thighs/knees
1 back of thighs
1 butt/hips
1 abdomen
1 arms
$57,000.00
My husband and I talked about it, and although I was hesitant, he was adamant that moving forward was the right decision. He knew I feared progression, and becoming disabled like my mom. He also supports me in any choices I make that improve my quality of life, and ultimately, the life of our family.
There was some indication from the Facebook groups, and Dr. Byrd, that our insurance should cover my surgeries, but the amount was unknown.
TIP
For a comprehensive list of questions to ask your surgeon/potential surgeon join the “Global Lipoedema Awareness Surgeries/Doctors group on Facebook and use this LINK
You may find that surgery isn’t an option for you right now, for medical or financial reasons. If that’s the case, I know you will feel frustrated, sad, and angry. It’s okay. Allow yourself to grieve that disappointment but don’t give up.
Even if surgery is never an option, it’s important to remember that we only get ONE BODY.
- Don’t give up on it.
- Take care of it.
- Feed it well.
- Move it often.
- Wear your compression garments.
- Do self MLD. (lots of resources on YouTube) Find emotional support.
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I hope you find the information in this series of posts helpful. If you have any questions, please don’t hesitate to email me.
<3 Andrea
Andrea Matthes
Body Image and Healthy Lifestyle Coach
Founder of I’mperfect Life, LLC.
FB: www.facebook.com/imperfectlife
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All content found this website, including: text and images, were created for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you read in this document.
If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately. Andrea Matthes does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned in this document. Reliance on any information provided is solely at your own risk.
Dr. Byrd/Lipedema Surgery Center https://lipedemaliposuctioncenter.com/
11050 Crabapple Road
Building B
Roswell, Georgia 30075
Telephone: 770.587.1711
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