I want to know if you’ve been diagnosed with Lipedema and how you got the diagnosis. I’ll put my answer in the comment section, and I’m eager to hear others comments!
I learned of Lipedema from Social media in 2018, I decided to search out a doctor for o diagnose, but found the Fat disorders research society was holding a conference on Lipedema in Feb 2019. I decided to travel to Baltimore from California and participate in research with Dr Karen Herbst held by the university of Arizona. She did a few exams and said “welcome to the club” I’ve never seen so many women that look like me EVER. I then booked an appointment with Thomas Wright in St. Louis for my insurance to see I was officially diagnosed.
I pretty much diagnosed myself. I recently had surgery to remove a non cancerous lump near my jaw which was diagnosed as a parotid gland lump. In the recovery room they used the leg pressure wraps on my legs and i noticed that after almost a year of leg pain I felt amazing the next day. No pain no swelling so after I recovered I spoke to my pcp and was sent to physical therapy.
Yes she is!!! She has really been a big help in easing the pain Ive been dealing with. She really knows her stuff. Shes been a tremendous help in understanding what is happening to my body and what I can do to slow it down.
I started going through menopause over 4 yrs ago and started gaining weight. I tried all types of diets without success. This went on for over 3 years, and my weight slowly started creeping up. I'm a writer on Medium, and was reading a popular writer's blog on her lipedema and trying to get surgery. She was crowdfunding because she has no insurance. I wrote an article about the medical industry for her. But as I started looking up the condition, I realized that I had all the signs and symptoms of Lipedema. In short, I self-diagnosed my Lipedema (I'll write about how to self-diagnose in a future newsletter).
I started looking for a Lipedema specialist, and found there were none in my state. This is also when I learned the trouble women have getting Lipedema diagnosis and treatment, especially surgery.
I found Dr. Karen Herbst. I actually tracked her down, from Arizona to California. Okay, I don't live in California, but I called her office and made an appointment. She doesn't do online initial appointments for patients in my state (dang licensing laws), so I had to see her in person.
I bought airline tickets and booked an overnight hotel room.
When the day came, I flew down to L.A. and showed up for my appointment at 8am. She spent a good hour and a half with me, taking regular photos, thermal photos, measuring my body, and finally told me that I had Type III, Stage II Lipedema. I also have the beginning of Type IV affecting my arms.
That diagnosis was September 21, 2021, and is how I started this journey. My goal is to get surgery for my Lipedema, because it's progressive and I have a lot of fatigue and pain.
I learned of Lipedema from Social media in 2018, I decided to search out a doctor for o diagnose, but found the Fat disorders research society was holding a conference on Lipedema in Feb 2019. I decided to travel to Baltimore from California and participate in research with Dr Karen Herbst held by the university of Arizona. She did a few exams and said “welcome to the club” I’ve never seen so many women that look like me EVER. I then booked an appointment with Thomas Wright in St. Louis for my insurance to see I was officially diagnosed.
I pretty much diagnosed myself. I recently had surgery to remove a non cancerous lump near my jaw which was diagnosed as a parotid gland lump. In the recovery room they used the leg pressure wraps on my legs and i noticed that after almost a year of leg pain I felt amazing the next day. No pain no swelling so after I recovered I spoke to my pcp and was sent to physical therapy.
Karla, that's quite a story! I'm so happy to hear your pcp sent you in the right direction. I hope physical therapy is working well for you!
Yes it seems to be slowly helping. In fact my physical therapist is who told me I should look you up online.
oh, if it's Jackie, she is also my therapist! She is awesome!
Yes she is!!! She has really been a big help in easing the pain Ive been dealing with. She really knows her stuff. Shes been a tremendous help in understanding what is happening to my body and what I can do to slow it down.
A vein specialist diagnosed that I have lipedema
Rhoda, which area of the country do you live? Any recommendations?
I started going through menopause over 4 yrs ago and started gaining weight. I tried all types of diets without success. This went on for over 3 years, and my weight slowly started creeping up. I'm a writer on Medium, and was reading a popular writer's blog on her lipedema and trying to get surgery. She was crowdfunding because she has no insurance. I wrote an article about the medical industry for her. But as I started looking up the condition, I realized that I had all the signs and symptoms of Lipedema. In short, I self-diagnosed my Lipedema (I'll write about how to self-diagnose in a future newsletter).
I started looking for a Lipedema specialist, and found there were none in my state. This is also when I learned the trouble women have getting Lipedema diagnosis and treatment, especially surgery.
I found Dr. Karen Herbst. I actually tracked her down, from Arizona to California. Okay, I don't live in California, but I called her office and made an appointment. She doesn't do online initial appointments for patients in my state (dang licensing laws), so I had to see her in person.
I bought airline tickets and booked an overnight hotel room.
When the day came, I flew down to L.A. and showed up for my appointment at 8am. She spent a good hour and a half with me, taking regular photos, thermal photos, measuring my body, and finally told me that I had Type III, Stage II Lipedema. I also have the beginning of Type IV affecting my arms.
That diagnosis was September 21, 2021, and is how I started this journey. My goal is to get surgery for my Lipedema, because it's progressive and I have a lot of fatigue and pain.
What is your story?