by Angel Anderson
I’ve had lipedema since my early teens but didn’t learn about it until my late 40s. At that point, I was stage 3. Lipedema had run unchecked in my body for 35 years and it was starting to affect my mobility. Once I learned about the condition, and realized it was so obvious I had it, that I was frustrated that no medical professional had mentioned it to me before. What I’ve learned since is that most medical professionals in Canada don’t even know the word lipedema. I had one doctor ask if that meant my lips were swollen. Yikes.
You only know your own body
You only know your own body so I didn’t know it wasn’t normal for it to hurt massively when getting my blood pressure taken. Or that the pain felt when a small child or pet walked across my legs wasn’t normal. My husband used to sometimes poke me in the arm and couldn’t understand how it could possibly hurt when I complained about it. My diagnosis has explained so many things like my heavy legs, easy bruising, my inability to lose weight in certain areas through diet and exercise, cold skin and the ability to float like only those with lipedema can.
I still remember a passing comment as a teenager about my fat calves and a comment about my thunder thighs as I walked down the aisle of our big yellow school bus. I was ‘normal sized’ everywhere else at the time. Smaller on top in comparison to my lower body with a flat stomach. As hard as it was to learn about my lipedema diagnosis as the progressive disease that it is, it was also somewhat of a relief to learn after all these years that it wasn’t my fault.
No Surgeons in Canada
When I first discovered having the condition, I was not mentally prepared for the thought of lipedema removal surgery. There are currently no surgeons in Canada who are specialized in later stages of lipedema which would mean an out-of-country surgery for me. As I started to read more in the Facebook surgery groups, a lot of my questions were being asked and answered by others. I began seeing a massage therapist who is experienced in manual lymphatic drainage (MLD) massages and post-operative care. Knowing that I had her for my post-operative care, checking over my sutures twice a week, ensuring my healing process would be on track, I started looking at surgeon options. Immediately Dr. Ghods stood out to me. He is a leader in his field, the pioneer of the liposuction techniques used for lipedema removal and he works out of a hospital that includes up to six nights of post-operative care.
Finally in the Right Hands
I travelled to Germany for the first of four surgeries in May 2023. It was such a relief to be working with medical professionals who understand my condition. I didn’t have to fight for proper healthcare. I didn’t worry about being challenged on the validity of my condition and symptoms. I didn’t worry about fat phobic comments by my medical team.
Once I had made the decision to travel for surgery, I was on autopilot, doing what needed to be done. It wasn’t until I was being wheeled towards the operating room did I have a slight panic at the realization of having a major surgery in a country overseas by myself. Thankfully, that panic was short lived as I wasn’t about to change my mind at that point!
That first surgery was on the fronts of my legs and they removed 12 litres of lipedema fat. I booked my following surgeries only three months apart as I wanted to get them over with quickly and let my body fully heal sooner. Swelling and inflammation can last up to a year after surgery so I wanted that countdown to start sooner than later.
Surgery two was in August on the backs of my legs, again with 12L removed. A total of 24L removed from just my legs left me feeling so much lighter. Everything was easier – walking, taking stairs, and more. Even seven months after that surgery, I still think about how much lighter my legs feel each time I climb into the bathtub.
Surgery three was in November. I was discharged on my birthday! This surgery was on my arms and abdomen with 12.5L removed. I have so much loose skin in both areas now. I can grab a handful of loose skin on my upper arm alone. A skin removal surgery for those areas may be in my future but not for at least a year.
My final surgery was in February 2024. Only nine short months after my first. This time it was my backside. From my bra line down to my knees. In this surgery, they removed a whopping 14L. A lot of it was from my butt! I’m currently still recovering from that surgery and am still swollen but I love that I no longer have a butt shelf. Just a more typical transition from my waist down.
I didn’t have to fight for proper healthcare. I didn’t worry about being challenged on the validity of my condition and symptoms. I didn’t worry about fat phobic comments by my medical team.
The recovery after each surgery was different from the previous one. Not having my legs operated on was nice as it made it easier to get up walking more quickly. Each surgery was painful, for sure, but I found that I wasn’t in constant pain. Movement was hard but laying with my legs elevated was always comfortable with minimal pain.
Meeting Amazing Women a World Away
I’ve met so many amazing women through this surgery journey from all over the world that I now call friends. We typically start a group chat a few weeks prior to surgery to get to know each other and answer each other’s questions. The day before surgery is admissions day. We really get to know each other then as we all wait for our turn to meet with the different surgeons, have bloodwork taken, see the anesthetist, attend a nutritional cooking class and more. We become each other’s hype team. Some of my favourite comments after surgery are – ‘Look at your arms, they’re like sticks!’ and post back side surgery – ‘Your butt is so little and like a proper peach.’ I’ve always travelled alone for my surgeries and the group of women there each time has made an amazing difference. There is always at least one sweet partner or mom who is willing to pick up additional items from the grocery store for me or add me to their take-out supper order. Our group chat continues throughout our stay allowing us to check in with each other from our beds before we’re able to safely go for walks down the hallway and even after we each get home we continue to check in with each other.
Surgery has been Life Changing
Surgery has been life changing for me. After having 50.5L of lipedema removed, I love what my body can do now. I can go for long walks, I can go dancing, I can say yes to more activities, I can plan more vacation adventures. Surgery isn’t a cure but I think of it as a reset. Now I can implement some conservative measures that will keep my lipedema under control and from affecting my mobility again. These include daily compression wearing, walking, bouncing on a rebounder and standing on a vibration plate to get my lymphatic system moving, and eating foods that do not increase inflammation in my body.
I’m passionate about raising awareness of lipedema in Canada and advocating for healthcare coverage. I don’t have hope that I’ll be reimbursed by my healthcare system for the $90,000 CAD of my personal medical expenses including surgery costs, hotels, flights, trains, taxis, food, MLD, and compression. I do have hope that persons with lipedema won’t have to know the struggle of having to ‘teach’ their medical professional about lipedema, that they won’t have to fight to receive the healthcare they deserve, that they will learn at an early stage about their lipedema so they can implement conservative measures and never reach the later stages where mobility is impacted. I’m so excited for the changes to come surrounding lipedema in Canada!
