I wrote these words in a Lipedema support group this past July. I found myself at a loss of with whom to share this grief. I have not yet come out publicly about my Lipedema. Likewise, I have told a few select people, but I struggle with the stigma. Publicly, people can be so cruel. I think telling the world makes this real. So real.
Brave steps
Writing this blog is an outlet and a living road map of the journey I am on. A journey in which I know I am not alone. I have heard from so many women whose stories could be my own. So despite a constant stream of doubt and fear, I am going to leap anyway…
I have come to know through the diagnosis of no fewer than six doctors and medical professionals that I most certainly have Lipedema stage 3 type 2 and type 4 arms. I have taken the necessary steps to regain control over my life. I see a lymphatic specialist physiotherapist here in Winnipeg for MLD (manual lymphatic drainage massage), I have been fitted for custom compression garments and wear them daily. I have adopted a ketogenic diet to support reducing inflammation and pain. I ride my bike and swim as often as I can manage between painful flareups.
So I’m typing into a room full of strangers hoping I’m not alone.
What is lipedema?
In my pursuit of knowledge about my disease, I have come to know that Lipedema is “a loose connective tissue disease predominantly in women identified by increased nodular and fibrotic adipose tissue on the buttocks, hips and limbs that develops at times of hormone, weight and shape change including puberty, pregnancy, and menopause. Lipedema tissue may be very painful and can severely impair mobility. Non-lipedema obesity, lymphedema, venous disease, and hypermobile joints are comorbidities. Lipedema tissue is difficult to reduce by diet, exercise, or bariatric surgery.” – USA Standard of care for Lipedema 2021.
Lipedema is so poorly understood here in Canada that most care providers have never even heard of it. To be honest as a nurse, I had also never heard of it until I happened upon the diagnosis during a random internet search. I can hardly recall what I searching for when I spotted an image of legs that look just like mine. Never before had I ever seen legs like mine on anyone other than my mother. In a panic, I assumed those legs must be mine. How had they gotten a picture of my legs? “There is no way,” I thought to myself. I clicked through on the image and it took me to Lipedema Simplified.
What the heck is lipedema? I asked out loud. I spent the next eight hours searching for scholarly sources and research articles. I watched hours of grand rounds presentations for health care providers from the recent lipedema conference (2020). One doctor presented on the differential diagnosis for lipedema, starting at the feet and moving up the body.
This was my lightbulb moment.
Flat feet, lipomas on the ankles, pronated ankles and knees, painful fat especially on the inner knee complex, an accumulation of nodular fat deposits on the hips and thighs, disproportion between the upper and lower body, hyper-mobility, and cuffing at the arms and ankles sparing the feet and hands, easy bruising, all unaffected by weight loss. Everyone was a giant YES! I knew in my soul that this was my diagnosis. Now I just had to find help from a Canadian doctor to help me officially diagnose, treat and manage this condition.
This mission to seek care is what brought me here to this blog. Getting access to healthcare in Canada should never be this hard. Dismissed at every turn by doctors that have no idea about lipedema, most unwilling to learn. I have continued to seek out help despite all the barriers presented. I go into each appointment with managed expectations and clear goals. I bring my binder full of research with me and aim to do as much leg work as I can to help doctors help me.
Gaining traction
“Respectfully persistent” is how my boss once described me in an annual review. I have never reacted emotionally to each common misconception presented by a doctor. Steeling my nerves to face each rebuttal with knowledgeable resources and create an opportunity to educate. It is after all what we do as nurses. We educate, we advocate, and proceed with compassion. This time I was the patient and I simply cannot lay down and accept defeat. I saw my family doctor multiple times and she kept my binder for her reading. She provided me referrals to every specialist we could think of to help confirm the diagnosis of lipedema. Endocrinologists, vascular surgeons, genetics, plastic surgeons… literally everything we could think of.
Turned away in letters by most, and others simply acknowledged their lack of knowledge face to face or via phone appointments. Persistence pays off though. One of the endocrinologists that I saw looked thoughtfully over my binder of resources, and FINALLY confirmed my diagnosis of stage 3 lipedema. This is a huge development for me. This doctor acknowledged that we must treat this condition rapidly before I lose more mobility. They have written a letter to Manitoba Healths out of Province insurance department for out-of-country surgical approval. Now we wait.
It's not cosmetic
There is no cure for Lipedema. There is however treatment. At my stage the only way to help reduce pain and increase mobility to prevent becoming totally disabled is surgery. It’s called lipectomy and essentially it’s liposuction removal of the damaged tissue which has become fibrotic and painful. There is a common misconception surrounding the use of liposuction as a purely cosmetic procedure. When in fact liposuction is used for copious reconstructive surgical procedures and should be viewed as the same for lipedema.
Getting surgery for Lipedema can only be safely done by a lipedema specialist that is familiar with lymphatic sparing procedures. At present, there are no specialists or treatment options in Canada. To date, two women with lipedema have had their surgical reconstruction covered by the provincial health care in British Columbia. At present the government of Manitoba has refused to provide care to women suffering from lipedema, citing that the surgical treatments are “experimental” and therefore cannot be covered. I aim to face that false notion head-on in my pursuit of equitable access to healthcare in the same system in which I provide care.
Lipedema affects almost exclusively women. Women’s rights are human rights! Further denial of our healthcare needs must not be tolerated quietly.
So again I steel my nerves to go face to face with the province of Manitoba to demand access to life-changing treatment. Wish me luck.
I am going to advocate for us. For myself, my daughter, my mother, and for all of us Canadian women affected by this disease.
2 Responses
You got this, and aim cheering you on the whole way!
Thank you for your persistence in bringing this condition to the forefront. Policy change is needed urgently to help those who suffer from this disease.