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  • 14 Jan 2024 2:19 PM | Sandi McConnach (Administrator)

    Colleen’s Lipedema Journey


    Colleen O’Farrell Q&A on her Lipedema journey. Colleen is a Director for the BCLA in charge of memberships.

    How long have you been dealing with Lipedema?

    I was diagnosed 3 years ago at the age of 47, but have been dealing with the symptoms and consequences of the disease since puberty. 

    Lipedema is resistant to diet and exercise.  I watched helplessly as my body got bigger and bigger. It didn’t matter what I ate, nor how many diet and exercise programs I tried. Starvation, bootcamps, you name it, I tried it. 

    I have spent thousands and thousands of dollars trying to "fix" myself only to discover at 47 that it was all futile. Don’t get me wrong, living an active and healthy life style is vitally important especially when you have a lymphatic disease; but, the emotional toll of this disease is something that isn’t always discussed.

    The dysmorphia, the anxiety, being told continually by countless doctors that you need to move more and eat less, the constant stress of watching every bite you put in your body and counting every calorie only to find out that all of the effort was in vain because you really had no control over the situation.  

    How long did it take to get a diagnosis?

    I discovered that I had lipedema quite by accident. I knew my legs were getting heavier and more painful at the onset of perimenopause.

    I had heard of something called Manual Lymphatic Drainage (MLD) that I was told might help. So, I gave it a go like so many other modalities I have tried over the years. I had an amazing therapist, who didn’t think that I had lymphedema, but that I had something called lipedema.  She asked me to speak with my doctor.

    My GP was very open, interested and willing to do research about my condition. She agreed that I did have it. She didn’t know where to send me for a specialist diagnosis which was required to seek treatment. 

    After about a year of getting nowhere in Canada, I reached out to a Lipedema clinic in Germany and received my first of 3 diagnoses via a zoom meeting during COVID. 

    After which I ended up at a weight loss and lifestyle clinic in BC where I was initially offered bariatric surgery. After much discussion and lots of tests, it was determined that on paper I appeared as an athlete; however, my body did not physically represent that. I was determined to be grotesquely obese according to my BMI. Anyone that tells you that hearing those words isn’t emotionally scarring is lying.

    Finally, I was then sent to a specialist for my Canadian diagnosis which is needed to fill in medical forms for any medical coverage. His letter was completely useless to me, as he clearly stated he did not support surgery and I should just wear tight pants!

    By then I already had my German and US diagnoses and had traveled to Germany to undergo my first of 4 recommended surgeries to treat my condition.  I know I will not win this battle to have my treatments covered in Canada, but I hope to help change things for those dealing with this disease in the future. 

    What problems have you encountered with getting referrals for a doctor that understands Lipedema?

    There just isn’t  anyone willing to diagnose, treat and support those trying to fight the progression of Lipedema.  

    What made you decide to leave the province to obtain help for your Lipedema?

    Once I understood that I had a treatable condition and that it wasn’t all in my head, I joined every online forum, support group, facebook group etc. that I could find to educate myself and figure out what to do. I wasn’t willing to wait anymore. I had been dealing with this for over 30 years. Our current medical system is broken and I wasn’t willing to give up my future health and mobility to wait and see if it would be fixed.

     

    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) $600
    0 (lay flat seat on trip home — really needed!) 
    -Accommodations for 2 weeks: $2500
    -Additional expenses (food, etc.) $1000
    -Total per surgery: $18600




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