Patient Stories

Lipo-lymphedema goes undiagnosed for years

By Amanda

I noticed I was different around 8 years old. I was bigger than everyone I knew – thicker. I didn’t worry much about being fat though – I had other things that made me different from my peers – I was the smartest, the youngest, and a girl. Being “fat” was just an added insult to handle. I deflected comments from anybody who had the audacity to mock me. I grew up to be the tough girl. It was all a façade, but it was an important image to maintain. The shell protected me from being different.

As I aged, my upper arms outpaced my shirt sleeves at an alarming rate. My thighs, despite barely eating and bicycling miles a day on a regular basis, got thicker and thicker – and not with muscle. My knees began to be impossible to distinguish. By the time I was 17, people were regularly commenting that they didn’t understand how I was “as big” as I was since I barely ate. They could see the crazy disconnect between my body and my food intake, but the doctors could never understand – and still don’t.

I’m 42 now and still explaining myself to every doctor I see. Still defending myself. Still feeling to blame for my body’s deficiencies – my giant biceps, knock knees, fat pads around my knees, lack of an Achilles heel, flat feet, disproportionate butt to waist size, painful fat, cold skin, etc.

After four pregnancies with C-section deliveries, my left calf started swelling. My primary care practitioner (PCP) dismissed me with water pills after an MRI showed no blood clot. My left calf continued expanding and my right leg quickly followed suit, though not to the same extreme. A new PCP took over the practice and I told her about lymphedema. She agreed to send me to physical therapy (PT), but she wasn’t sure it would help, insisting all I needed to do was lose weight. 

I began getting my left leg wrapped, but my work interfered with my appointments. I tried again when I got a new job but that also failed. The wrapping wasn’t done tight enough to remain wrapped between appointments. I continued doing self-manual lymphatic drainage (MLD) as best I could but wrapping my leg myself was physically impossible – I couldn’t reach around my leg to pass the wrap from hand to hand.

Determined to find an answer
The pandemic hit, I got COVID, and my leg swelling decreased – due to three weeks of COVID-related GI issues. I lost 40 pounds! Then my left leg really ballooned. At its largest, it was 36” around. I found a Facebook support page for lymphedema and through many hours of Googling, I learned about Lipedema. I watched a Fat Disorders Resource Society (FDRS) conference video with Dr. Dean showing lipo-lymphedema and knew I found the answer. 

I made an appointment with a vascular surgeon who specializes in lymphedema. I let the surgeon know I wasn’t looking to have surgery but to determine what was going on with my body – a diagnosis and a path forward. She had me lift my skirt and dismissively told me it was lymphedema. I asked about Lipedema and venous insufficiency and if lymphoscintigraphy or ultrasound should be performed to validate the diagnosis. Instead of a discussion, I was shrugged off with a pronouncement that there were “minor varicosities present.” She added that Lipedema is a condition, but that wasn’t what was happening – despite not touching me or looking at more than my calf. 

She then asked if I had considered bariatric surgery after I told her I didn’t want surgical intervention. I was crushed. All the hope I felt was extinguished by this cruelly out-of-touch doctor. All I wanted was help. What I got was shame.

I called to make the physical therapy appointments for Complete Decongestive Therapy (CDT) and was informed the treatment would take a minimum of eight weeks and possibly up to four months. I investigated short/long term disability, but didn’t qualify since I was able to work. I requested accommodations for shifted hours to go to appointments and to work from home as needed so I could elevate my legs. Sadly, my written requests were not responded to in writing.

Despite the lack of formal approval, I kept the appointments. I was wrapped twice per week and was very compliant – keeping my wraps on 24/7 and only removing them to take a shower before my appointment. My CDT therapist was so thrilled with the weekly progress she declared that my legs were “her masterpiece legs.” My left calf circumference went from 36” to 18” and my right leg decreased from 22” to 16” – I could finally wear pants! I obtained a pneumatic pump, was fitted for custom garments, and was sent off to continue my care on my own.

Luckily, I learned about the FDRS 2022 Conference, and now I’ve found a community – so I’m not completely alone. At this point, I do as many conservative treatment measures as routinely as I can, and don’t worry if I’ve missed an item. The self-care I perform includes wearing compression garments, limiting my daily carb intake, taking supplements for lipo-lymphedema, using a vibration plate, elevating my legs, performing self MLD, and using a percussion massager to help break up the fibrosis and fat nodules. With this strategy, I have maintained my calf circumference reduction, see visible improvement in the fat nodules, and measurable improvement in my wrist circumference. So I keep going, hopeful for continued progress.

Scarily, I see this disease starting in my children. My daughter has already been shamed for her sudden weight gain. I am on a mission to spread this information to the pediatric community to ensure children will not bear the emotional and mental distress that comes from this disease. Or bear the incredible pain and grief of lost mobility at too young an age, as I have.

Amanda is an Environmental, Health, and Safety Professional from Hammond, IN. You can find her @thislippymama on Instagram.

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