Jen’s Journey With Lipedema Part 1: The Fat Disease

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Lipedema….Liped Whaaat?? You’re not the only one who never heard of this disease.  In fact, I’ve seen more than 15 different health care practitioners and misdiagnosed for 20 years! 

“Lipedema also known as “painful fat syndrome,” is a chronic disease occurring primarily in women, characterized by bilateral, symmetrical fatty tissue excess in the hips and upper and lower legs, combined with a tendency for leg swelling that worsens with standing” (Fat Disorders Research Society, 2018).

Literally this is a fat disease. It’s a genetic disease. The classic patient will have a normal size trunk and have excessive fat accumulation in the legs. Hormone changes and inflammatory diets are known to cause disease progression. There are 4 stages of lipedema. Below is a picture of inflammatory lipedema fat vs normal fat. 

When I came across the diagnostic label “lipedema” in early 2017, I was like what the hell is that? I had never heard of it and I went right to google to find out more. Well the first page I clicked on was the fat disorders website and there it was —a picture of my legs.  There was the answer from over 20 years of searching, shameful emotions, and at that point in time, I realized I was misdiagnosed for years. My healthcare practitioners diagnosed me with lymphedema.  Lymphedema is the accumulation of fluid on a body part, commonly the legs and feet. My feet never swelled. I never had symptoms of lymphedema except I had BIG legs.   

My early journey with lipidema & triggering events

I was a slim child and very active. In my teen years I surely had hormonal issues as evidenced by heavy painful periods. I was on birth control (hormone trigger). After puberty (trigger again) my legs really filled out in areas that were not normal to fill out like fat around the knees and in the ankles. In college I gained the freshmen 30 and was able to lose it with sensible eating and exercise. In my 20’s, after the birth of my two children (hormone trigger), I had serious fat deposits on my legs (I also gained more than normal weight in my pregnancies-trigger). I sat down with my family MD and showed her my legs. She told me I had lymphedema (fluid accumulation in the legs) and prescribed compression stocking and a diuretic. The stockings helped some, the diuretic none so I stopped it. I continued another twenty plus years with my legs aching, hurting and these abnormal fat deposits. I had this very weird body, being a size 6 on top and 12 on the bottom.  Classic lipedema! 

I devoted most of my 20’s and 30’s to exercising, healthy eating, wraps, diets, you name it, I have probably done it.  I’ve worked on self love and acceptance for years.  That doesn’t change the stares from people in public, comments from friends and family members and comments from fitness instructors that I needed to diet and exercise more. So despite me trying to accept myself and my body, others around me didn’t. Battle that for 20 plus years!!

I realize now that is a societal problem.

However, this disease is not just obesity. I have lost so much weight that my ribs were showing, breast size was nearly training bra size and yet the fat pockets would not come off my legs. I worked out with trainers, committed to intensive exercise programs until a few years ago when my body told me to stop the insanity of restrictive diets and exercise. And stopping wasn’t hard when I didn’t see results after all the years of trying.

As my disease progressed, especially in my late 30’s and to recently, it was becoming more of a medical and emotional problem. I say problem because it cumbersome and affected nearly every activity in my daily life. Fatigue, heaviness, pain in legs and the need for frequent rest periods where my legs would be elevated. Lymphedema was certainly becoming a secondary problem. Clothes never fit properly.  My exercise and daily activities were slowing down. Despite EXTREME healthy eating and living, I still was very inflamed. And this was emotionally draining to be trying so hard and see my disease progressing in my legs.

Being the avid researcher that I am, I made connections, joined online support groups, networked, read hours of testimonials, started interviewing and meeting with physicians and surgeons.

I share with an open heart and vulnerability my journey to treat this disease with liposuction. I share with you the people who impacted and helped me on my journey.

Dr. Karen Herbst at University of Arizona.  Thankfully this women is driven and has a passion to study fat metabolism disorders like Lipidema, Dercum’s disease and others. I found her research, recommended supplements, diets and lifestyle recommendations that have been studied and shown to help slow disease progression. Fortunately, but unfortunately, I’ve been following her list to a “T” for at least 5 years. So I knew I needed to move on. And that meant I should consider Water Assisted Liposuction (WAL).  At this time, I just could not come to terms to consider a “cosmetic liposuction” surgery for myself. I am so conservative with treatments and lifestyle that I held so much fear of what the surgery would do to my immune system, my brain, would I be worse after? I pondered these thoughts and fears for months and put lipedema treatment on the back burner.  

I did not know it at this time but my life was full of fear…..

My patient and friend Carla was a catalyst for change. Carla and I were out on a river trail walk on a warm summer evening in 2017 having a conversation about doing some activity that involved wearing a bathing suit. I replied I would never go in public in a suit. She questioned my reasons and I told her about my legs. She looked at me and said “Well do something about that shit”.  She went on to encourage me to contact a plastic surgeon to discuss surgery. I thought for hours after our convo about liposuction and that perhaps I should consider this treatment option that many brave women have in the online support groups. Thank you Carla for your friendship, encouragement and pushing me outside my safety zone.  That day and conversation forever changed my life.

Next. My life coach Carol DelMonico. Carol, thank you for holding space for me, for helping me to realize that my fear of the outside world and unknown was rooted in feeling betrayal of my own body.  For years, I felt like my body was never a reflection of how I lived, how much love I had for it. Carol helped me to realize that it was OK to pursue surgery and more importantly that I could continue to be authentic and share my journey. 

These two amazing women helped me realize I could do more, that I held the power to make the decision to change my life, that my belief system was not serving me. Without Carla and Carol’s encouragement, love, and support I would likely still be living in fear wondering what more I could do or just complaining about my legs. 

Now I was ready to move onto the next phase. 

In the later part of 2017 I spent much time on the forums, reviewing pics of before/after results, listening to stories. I am beyond grateful for social media and my loving, supporting community of Lipedema sisters.  In early 2018 I finally chose my surgeon and procedure: Vaser Liposuction with Dr. Michael Schwartz MD. The vaser ultrasound probe combined with the tumescent injects water into the tissue to break up the fat cells and then it’s sucked out. I was drawn to Dr. Michael Schwartz MD in Pasadena CA. because of his amazing results and because his approach was more aggressive to get all the diseased fat removed.  I met his assistant Cristina in a few online support groups. She provided such great insight as she had the disease and had surgery with Dr. Schwartz.  I am so thankful for Cristina as I wanted so badly to back out my surgical commitment several times. She held my hand, assured me I could do it. She has been an instrumental part of my pre, during and post operative care! 

On April 12th, 2018, I embarked on a 4+ hour surgery (number 1 of 2) with Dr. Michael Schwartz in Pasadena, California.

8 liters of fat was removed from the front of my legs.

That is 2 gallons.

That is 14#. 

I had 24 incisions from my groin to ankles. 

I cried the entire day. I should say sobbed. So much emotion gone with the physical fat. Years of shame, years of feeling like I wasn’t doing enough, years of comments from those around me who have no idea what it’s like to not be able to lose the fat. The fear of a progressing disease.

That day….I saw pictures from pre and post operation and for the first time since my teens I saw my knees and shin bone.

Here and daily I express gratitude for Dr. Michael Schwartz as he gave me back a part of my life that has been missing.

Despite the fear of surgery, the long recovery, and some of the horrid looking post op recovery photos I saw online in my support group, I did it.  My tribe lifted me up. I felt so much love and support for days after my surgery. Replies like “you are so brave and so much love for yourself to embark on this journey”.  Yes, that is exactly what this journey was.  I did it because it is the only other treatment option to slow the progression of the disease and perhaps stop it dead in it’s track. I did it because I do love my body and I knew the other option was continued inflammation, fat growth and all the emotional baggage that comes with it. I didn’t have the payment for surgery. I financed it and will make payments for years. An investment in my health at all levels.

And I got to participate in a Lipedema study!!!

When I checked in for surgery on the morning of April 12th the nurse asked if I wanted to participate in a study at the University of Arizona!  Hell yeah!  So I had two additional thigh biopsies taken and BEST part… my stool sample will be studied!  Now that is exciting news for a Nurse Practitioner who practices Integrative & Functional Medicine 🙂 Yep, I was so excited that I almost forgot I was going into surgery.

There’s more people who were instrumental in my journey and recovery.

My friend and colleague, Dr. Calley Asbill ND. I confided in Calley a few weeks prior to surgery, explained the common post operative ailments like severe inflammation, swelling, sharp nerve pain, my fear of prolonged anesthesia. Dr. Asbill recommended some homeopathic remedies and they were a lifesaver. Within minutes of using hypercumin, my nerve pain was gone. I was having trouble waking up from anesthesia and after getting some phosphorus pellets in, I was alert and clearing that anesthesia like a pro!  Of course, I followed healthy peri-operative recommendations as well. Grateful for Calley and my functional medicine training as I feel my recovery milestones were pretty darn good!

I could not have done this without my life partner, husband, and caretaker Steve. He refused to let me cancel my surgery two weeks prior.  He took the road trip and drove me to CA and back home. He met me after surgery with flowers. He cooked for me, gave me my meds on schedule, changed my dressings (yes 24 weeping wounds), washed my clothes and lastly he saved me from passing out several times—on the toilet, in the shower, in public restrooms-you name it, he was there by my side. But most importantly, he was by my side for over twenty years regardless of how I looked. While this is a personal journey, it really is our journey.

My teen daughter McKenna who cooked me meals, drove me to therapy appointments and re-arranged her busy friend and work schedule to take care of her mommy so dad could go back to work!

My post op recovery and therapy team.

  • Shana Brooks PT and lymphedema specialist & Jennifer Kanyuch, PTA-both of these ladies are at Focus Physical Therapy.  Shana’s documentation helped me to get insurance coverage (yes Pacific Source found my surgery as medically necessary).
  • Shawn Axten PT for Cranial Sacral Therapy
  • Joanna Cashman RN, LMT
  • Sarah Allen LA.c, Acupuncturist at Mountain View Acupuncture. 
  • Massage by Dale Ann. 

I’ve learned the true definition of self care and love during this post op period.

My self care routine is 24 hours a day medical grade compression, morning and night self MLD (manual lymph drainage massage), Deep Diaphragmatic Breathing several times per day, walking, stretching, yoga, acutonics/vibration therapy, weekly acupuncture, 1-2 times per week professional MLD/Massage. 

As I write this, I am almost 6 weeks post op from surgery number one.

We are coming up to Lipedema Awareness Month (June).

And I’m 4 weeks away from surgery number 2 which will cover the backs of my legs and my upper arms (sadly, this is worsening too). I will then be done. I pray I’m done.  I have hope that all the work Dr. Herbst is doing will find the on/off switch for this genetic disease. For now, I did what I know is best. 

I debated on sharing my story. But Carol helped me realize I am authentic and there is hope and joy in my journey with a disease. My hope is that my journey and story helps increase recognition and earlier diagnosis of lipedema. Even for 1 person. My hope is that society stops judging people with fat as lazy and having poor diets. My story is proof.

With love and gratitude in Lipedema Awareness!


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