My Out-of-Pocket Costs From Getting My Lipedema Diagnosis
It was costly! But you can do better than I did. I can show you how.
Hello Everyone!
I’ve talked to many women about how to get diagnosed and seen the persistence from your side in getting the treatment you deserve. You all are SUPERSTARS! You work so hard on taking care of your body and getting what you need from the medical community. You have been through the trenches! You’ve had to break through stereotypes and break down the barriers to getting treatment. You fight so hard, and you keep me going. You are my inspiration.
Getting diagnosed is the beginning of the journey. More resources are out there now than they were even a couple of years ago. That’s why I’m focusing on diagnosis until the end of the year. I want to give you tools you can use.
My own start was expensive, and I don’t encourage anyone to do it the way I did it unless you're willing to spend $$$! Yes, it’s faster, but there are now less costly ways to get diagnosed.
The cost! That’s what we are most concerned about, and rightfully so. This is a costly disease for us.
Since I started writing about Lipedema, many have asked me how much it cost me to get my Lipedema diagnosis. Well, let me tell you…
I learned about Lipedema the same way most women learn about this disease; not from my doctor or another medical professional, but from the internet. I read an article about Lipedema on a blogging site I used to write for. After that article hit me, I scoured the internet and found what little information was out there. I concluded that I likely had Lipedema.
I knew if I wanted to get medical treatment, I needed a diagnosis.
In my area of the U.S., the Pacific Northwest, there was no physician I could find who knew anything about Lipedema. There was also no coverage plan for surgery, no benefits, or even a mention of Lipedema diagnosis or treatment covered under my insurance.
I found out quickly that this would be a long road. But I was having pain and mobility issues now, and I was impatient in waiting to get treatment.
So, I jumped in with both feet by researching the best person who could give me a legitimate diagnosis, no matter what I had to do.
That’s when I found Dr. Karen Herbst.
I started making cold calls to find her. At that time, she was in Beverly Hills (she is now in Tuscon, AZ), working out of Dr. Jaime Schwartz’s office. And she was taking new patients to diagnose!
I called the clinic and made two appointments back-to-back, first with Dr. Herbst, and then with Dr. Schwartz. In retrospect, I’m so happy I got a surgical consult because I saved myself a second trip.
My general costs were as follows:
Airline trip: $250
This was in 2020 during the pandemic, and this is an estimate.
One-night hotel stay: $175
I flew in the night before, had my appointments the next morning, and then flew out the same day.
Ground transport: $120
Uber transport to and from the airport. My hotel was a couple of blocks walking distance, which I strategically calculated to walk to my appointments.
Food: $75
Dining out in Beverly Hills is expensive! I wasn’t extravagant, but being there for a full three meals, this is a reasonable guestimate.
Medical consult and diagnosis with Dr. Karen Herbst: $500
I spent an hour with Dr. Herbst, and she did a thorough exam with photos, measurements, and a clinical exam.
Surgical consult with Dr. Jaime Schwartz: $300
This was a much quicker visit. I think it was about 20 minutes (I was already stripped down to my underwear, so I think that saved some time).
Total: $1420
I consider this the “old way” of getting diagnosed. There are much better options now as Lipedema becomes more and more prevalent.
Getting diagnosed now isn’t easier, but you can do it without spending a large amount of money and traveling away from home. Depending on where you live (medicine in the U.S. still has areas of old-school thinking and will deny the literature and facts), you will have to spend more time rather than more money getting diagnosed.
It’s really up to you. Do you want to spend more time or more money?
Regardless, I encourage everyone who has Lipedema or thinks they have it to pursue a diagnosis. I say this a lot: the more of us who are diagnosed, the more the medical and insurance industry must recognize Lipedema as a disease.
The ultimate goal is for our governmental insurance system (Medicare and Medicaid) to also recognize and reimburse for Lipedema treatment. When Medicare recognizes Lipedema, that’s when we get our own diagnosis code. We will get a standard of treatment guidelines (beyond the Lipedema Standard of Care) that the private sector must abide by.
If you haven’t already approached your PCP requesting a Lipedema diagnosis, I encourage you to do so and be prepared with documentation and information to bring to your PCP. They will likely not know about Lipedema. However, depending on your physician, they may be open to exploring this with you and helping you get treatment. If you have already tried and failed, there are other options for you. It will take a lot of footwork, but you can do it.
As an annual paid subscriber (not a monthly subscriber- if you want to switch to an annual plan, go here), you have a complimentary call with me if you want to learn more! Go to my calendar and schedule time with me when you’re ready.
Take care,
Michelle