How many procedures have you had to improve your quality of life?
So far, I have had two high volume lymph sparing liposuction procedures performed in Germany. I have had a total of over 13 litres of diseased tissue removed from my thighs so far. I have 2 more procedures to go on my calves and my arms.
How did you decide on the doctor that you chose?
It was a combination of research on forums, online, chatting with those I found that also have this disease and factoring in the overall costs of the treatment and travel.
How long did the procedures take?
Each surgery was performed within 2 hours. I was under anesthesia and spent 2 nights in hospital for the first and just 1 night in hospital for the second as my system handled the treatment much better the second time.
What was the follow up care required?
I was required to stay in Germany for over 10 days. I received MLD every other day while there. I had to inject myself with blood thinners daily to prevent blood clots and walk immediately after surgery and hourly which both were required to help with blood flow and the drainage of the excess fluid they use during the surgery.
It was also required that I drink 6+ litres of water every day (the amount of tissue they removed) to maintain my blood pressure and prevent fainting, wearing compression was also required. They even put me into my flat knit compression before I woke up from surgery. They were required 24/7 for 6 weeks post op.
How long has it been since your last procedure was done?
I had my first surgery in October of 2022 and my second in May, 2023.
How often do you have to see your doctor for follow-up?
I haven’t seen my German doctor at all, but have followed up with my GP here in BC once a month.
What changed after your surgery as far as wearing your compression?
I still wear my compression daily as I actually feel better in them. I am still swollen and they say the full results of the treatment will take up to a year to see.
I am just now starting to see the full results of my first surgery on the fronts of my thighs. And the backs of my thighs are still very swollen from the second treatment. It doesn’t hurt quite as much to put them on anymore!
What has changed as far as your activity level?
Surgery has changed my walking gait. My hips and knees are still adjusting to the change, but I can tell it is for the better. The pain has decreased. I can walk and bike further and faster, lift more at the gym, swim further and get into deeper stretches and yoga poses as my body isn’t binding from the sheer bulk of my thighs.
Would you recommend others follow in your path?
I think everyone needs to follow their own path. Do your own research and educate yourself on your options. If there had been an easier and cheaper option, I would have taken it. But this has been my journey and I don’t regret it. Would I like the government to cover this so I am not out of pocket for medical treatment that rightfully should be covered, you bet. But this is my life, my health and my future mobility that are/were at risk and those are priceless to me.
What message would you like to give to others dealing with Lipedema?
Keep fighting. It is a journey. A long complicated and tough journey that has many twists and turns, but know you aren’t alone in the fight. You will have to do a lot of research, ask a lot of questions, talk to many doctors who will likely tell you it is in your head or they don’t know what to do for you. Just keep asking the questions. Don’t give up. You are worth it. Your future health and emotional wellbeing are worth the struggles now.
Costs that Colleen has paid out of pocket
-Each surgery/hospital stay was $8500
-MLD $600 (5 treatments)
-Travel costs for myself and a traveling companion (required) $6000 (lay flat seat on trip home — really needed!)
-Accommodations for 2 weeks: $2500
-Additional expenses (food, etc.) $1000
-Total per surgery: $18600