After discovering that I had Lipedema, and researching the heck out of it, my next objective was to get an appointment with a doctor who could diagnose me and determine a plan of action. Once I accomplished that part, I quickly become focused on what information I wanted to secure for myself while I was at that initial appointment. I reached out to other women who were further along in the process and met with two of them who lived within my vicinity for a cup of coffee and a lot of discussion about what I needed to know, and what I needed to ask. That coffee meeting proved invaluable.
I was so stoked to meet up with two other women who were facing or had faced the challenges and mental fatigue that surrounds a diagnosis of Lipedema. It was a big moment for me, as I wore an above the knee jean dress with compression tights for the first time, in public, the day I met with them. My reasoning was this. Firstly, knowing that I had Lipedema provided me with a whole new level of confidence. Although my legs were just the same as they were before I knew I had Lipedema, the knowledge that I had a genetic disorder empowered me in way that I never imagined. It all goes back to that notion that somehow this guilt and weight (literal and figurative) I had carried for decades, wasn’t entirely my fault after all. This was emotionally and physically freeing. And so, I took my fat, compression-wearing legs to a public coffee house to meet up with two ladies I had never met. I stood there, proudly yet somewhat self-consciously, sipping my coffee, while being grateful for my “new to me” slender frame. I glanced around periodically to see if anyone was looking at my legs. Secondly, I knew that these two ladies would recognize me by my legs when they arrived.
Honestly, as I stood there, I watched everyone who entered the building to see if I could recognize them by their legs. As expected, I was able to pick them out as they walked in the door. They spotted me as well. I cannot adequately express how grateful and excited I was to meet them. Two more people to listen to, ask questions of, and share my own story with. Those hours were therapeutic and healing to my soul.
Both ladies were younger than me, and both had already received diagnosis; one for Lipedema and the other for Lipo-lymphedema. They allowed me to ask all my questions of them, one of which was “what questions I should ask my doctor at my appointment the next month.” They provided me with some great conversation, good answers to a lot of my questions, relieved a lot of my fears, and sent me on my way with a great list of questions.
So here goes:
- Do I have Lipedema? What stage do you I have?
- What treatments do you suggest for me personally? What options exist for me other than surgery?
- Is surgery really going to help me? What do your past patients have to say about their results?
How many surgeries will I need?
- What happens during surgery? What different types of liposuction do you offer and what is your recommendation for me?
- Do you use local or general anesthesia? Why?
- How do you decide what order my surgeries will be in?
- Will insurance cover my procedures? What percentage of your patients have had success with their insurance?
- Is the liposuction you do Lymph-sparing? How long have you been doing liposuction for Lipedema? How were you trained?
- What can I expect the day of my procedure? What can I expect in my recovery?
- How many liters of fat do you anticipate removing from my body? What will I need to do to maintain my results? Will Lipedema come back? How long do you expect that I will need to wear compression garments?
- Will I have loose skin? What can I do about that?
- Will the pain in my legs/arms/abdomen/hips go away after liposuction?
That’s really about 25 questions crammed into twelve, but it is a good start to asking the right questions and getting the answers you are looking for. Join a Facebook group for women with Lipedema in your community/state/country. There is a wealth of information that is shared between these groups of women and the answers and support they provide is really “spot on.”
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