My Personal Story of My Lipedema Diagnosis

After years of frustration, my diagnosis was a strange and profound moment

Does this image trigger you? It sure does for me. Photo by Online Marketing on Unsplash

Everyone has their personal story of how they became aware of their Lipedema and eventually got diagnosed.

Unfortunately, we don’t typically get diagnosed in the usual way—with our doctor recognizing our complaints, prompting them to assess us further, and arriving at a Lipedema diagnosis.

Nope.

Instead, we endure years of pain and frustration, begging doctors to take our complaints seriously, only to be told we’re fine or are misdiagnosed. And most of us are fat-shamed and told to lose weight.

My journey is most likely similar to yours; the only difference is the details. Let me tell you my story, and hopefully, you’ll see that my story rings true with you in some way.

I’ve had chronic pain in the form of migraines, back pain, joint pain, and achiness. For years I was passed around from doctor to doctor, ending up in a pain management clinic. From there, I was treated like a pin cushion.

I was given trigger point injections for my back pain and steroid injections into the nerves in the back of my head for migraines. I received knee injections for my osteoarthritic knees until that treatment didn’t work anymore. My only option was to have knee replacement surgery.

I scheduled an appointment with an orthopedist, one I know and work with within the hospital. He looked me over and told me he wouldn’t do surgery because I needed to lose weight (at the time, my BMI was 30.1). He surmised that my knee pain would likely resolve with weight loss. When I told him I’d been trying to lose weight without success for years, he shrugged and sent me out the door.

I cried in my car after that appointment. I’d been marginalized for being fat.

My Lipedema diagnosis came to me from an article I read. Let me explain.

I’ve been a blogger for almost five years on a platform called Medium. One day I was reading an article from a viral writer on there, and she was writing about her Lipedema and how she was battling her insurance. I typically write about women’s issues, and since I know A LOT about insurance, I decided to write a response to her article.

But first, I had to look up her disease because I’d never heard of it. Even in my thirty-plus years of nursing, I’d never encountered this Lipedema thing she was talking about. So I started researching Lipedema.

As I dug deeper and deeper, the dim lightbulb in my head slowly became brighter. I had the same signs and symptoms listed in all the articles I read. It was uncanny. At first, I doubted. But the more I read, the more I realized that I likely also had Lipedema.

I work in a hospital as a case manager, so all my colleagues are physicians, nurses, and varied disciplines of therapists and dieticians. I started asking around: “Have you heard of Lipedema?” Have you? Or you? Or You? Anyone?

Nobody I spoke with, not the doctors or nurses, nor ANYONE, knew about this disease.

As a medical person, I knew that if nobody knew about this disease, how could anyone diagnose me with it?

That epiphany made me dig my heels in deeper. I started looking for any specialist who could diagnose me. I couldn’t find anyone. At least not nearby, much less in the entire state of Oregon (where I live).

But I did find one physician, Dr. Karen Herbst.

At first, I came across her research papers on Lipedema. She is a diagnostician for Lipedema and a pioneer for the disease. I started seeking her out. I made so many phone calls trying to find her. I eventually did find her at Dr. Jaime Schwartz’s office.

I called the office there, and Dr. Herbst was taking appointments, so I scheduled an appointment. I figured I’d see Dr. Schwartz while I was there.

Remember, I only had my personal research on Lipedema and a hunch to go on, and I was taking a huge chance. I had to pay for a round-trip airplane flight, a hotel for one night, and of course, the consulting fees for both doctors. This was all based on my hunch that I may have Lipedema. That’s how desperate I was.

I’m sure everyone I knew thought maybe I was a little obsessed and a teeny bit crazy to fly down to California just for a diagnosis. However, I knew if I didn’t at least rule this out, I wouldn’t get any more help, and I was at the end of my rope.

Sure enough, Dr. Herbst and Dr. Schwartz both gave me a Lipedema diagnosis. Based on a hunch and without any help from the medical community, I was able to get myself diagnosed.

I’d like to know, what is your story? Tell me below in the comments. I want to let those who have not been diagnosed yet know that we all have similar Lipedema journeys.

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Take Care,

Michelle