Lipidema: I’m a Lippy Lady



While my family and friends know me for my loud laugh and my tendency to blurt things out at inappropriate moments (one of my worst flaws), a Lippy Lady has nothing to do with my mouth. A Lippy Lady is a nickname for those of us who suffer from lipidema or in my case lipo-lymphedema.

I don’t talk alot about my health situation, but I figured it’s about time I said something – if only to bring hope to some other female out there who has struggled for years with her weight and can’t figure out why she never loses.

I have a combination of two diseases. The primary disease is lipidema and the secondary disease is lymphedema. Lipidema (also known as painful fat syndrome) occurs exclusively in women and yes it is very painful. It is the abnormal build-up of fat cells in the legs, thighs and buttocks. It usually begins at the onset of puberty and while I’m told it is hereditary, my mother never had it. Currently, over 17 million women have this disease and don’t know it! Why? Because their doctors only see fat, not an underlying disease. Plus, I’m told that a total of 15 minutes of training, during a four year medical course, is all that is given to doctors on the lymphatic system. Which is why most doctors do not recognize it.

I spend about one hour a day in a lympha-press. A machine that squeezes my legs in the hopes of moving the lymphatic fluid in my body. The picture above shows what it looks like. It feels like a blood pressure cup on my leg and can at times be very painful.

In the early stages of lipidema a woman will be small on top and wide on the bottom. In other words a pear-shaped body. During each hormonal change (onset of periods, pregnancy, menopause) the woman will notice her behind and her legs getting bigger. When I was sixteen I noticed my legs (at the top) were getting huge. I couldn’t figure it out because I was very active – rode my bike everywhere, swam a lot, walked everywhere and was very conscientious about what I put in my mouth. Things got so bad when I was a teenager that I barely ate anything, yet I found it impossible to lose weight anywhere below my waist.  I can remember going to the gym with my mother at an early age to work out, with little to no success, and I continued to do that right up until the time I could no longer move my legs without severe pain. In all my years of working out and dieting I became incredibly discouraged and depressed because nothing worked. And with each pregnancy things got worse.

While trying yet another diet (Jenny Craig) and exercise program (Curves) I began to notice a rock hard substance in my legs and it felt like they were getting bigger. About this time my legs started to split open and water would leak out (that’s how big and tight they were getting). Unbelievably, when I went to my doctor he refused to listen to my concerns. I have since learned that most male doctors are preconditioned with an incredible prejudice against overweight women. So much so that they will tell you over and over again to go on a diet (even though you’re on one) and exercise (even though you do). Mine would insinuate that I was cheating on Jenny Craig, when in reality there was so much food on Jenny Craig that I couldn’t eat it all. My counsellor with JC began to notice that I was losing inches everywhere but below my waist (she measured me each week). She also measured my legs and told me they were getting bigger too. She was also concerned that after almost a year on the diet I had only lost 16 pounds when it should have been closer to 50. I went back to my doctor who again refused to listen to me.

In my case, I started to get several serious skin infections called cellulitis over the course of a year or two. After seven or more visits to the ER where I was given I.V. antibiotics and received home-care for a week at a time, one doctor in frustration said to me, “Why aren’t you getting your lymphedema treated?” At that point in time I had never even heard the word “lymphedema” before. So I asked him what he was talking about. He was shocked that my doctor had missed something so obvious and sent a letter to him with a recommendation to have me treated with manual lymph massage. But did my doctor listen? Of course not. He could only see the fat. So I dumped him and went to a walk-in clinic, where I managed to get a new doctor who realized right away there was something wrong with me. FYI – my new doctor is a woman. (Yes, I think it makes a difference).

She sent me to a lymphedema physical therapist who took one look at me and said, “I have some good news and some bad news. The good news is that all those years of trying to lose weight with diet and exercise and never being able to lose anything at all is not your fault. You have lipo-lymphedema and it is the reason you can’t lose weight.”

I wanted to cry. All those diets! All those gym memberships that never worked! All that money invested! I felt like a weight (pardon the pun) had been lifted off my shoulders. I always blamed myself but knew in my heart I couldn’t have done anything differently. Still I continued to blame myself. But, now I finally had some answers. So I eagerly awaited her cure for me to lose the weight. That’s when she hit me with the bad news.

“You have stage 3 lipo-lymphedema. There is no cure and dieting and exercising will never help you to get rid of it. Your legs will unfortunately continue to grow, but we can with manual lymph massage and compression stockings keep the growth at bay for a while.”

Unfortunately, after examining me further she realized the tissue was so hard and congested that I would need surgery to remove it before any treatment could begin. The goal was to reduce the swelling in my legs so that I could get into compression stockings which would keep the disease (supposedly) at bay. She sent me to a specialist who agreed with her diagnosis and to make a long story short I had the surgery, it didn’t work and the lymphedema (my secondary disease) kicked in with a vengeance. Five months after my surgery the congested tissue would also return and get so big that I could no longer walk without severe pain.

We have hundreds of lymphnodes throughout our bodies and in a normal person the lymphatic system takes all the bacteria, dead blood cells, fat, etc. and filters it through the lymphnodes to the liver, kidney, etc. and all that bad stuff eventually comes out in your urine. In someone with this disease, the lymphatic system gets all backed up with fat and it doesn’t filter through and everything gets clogged up and stays in one place and builds and builds and builds until the patient can’t even move. Most people with this disease are in wheelchairs.

All that to say this – if you are struggling with your weight and you cannot lose and you’ve tried everything, don’t let your doctor convince you that you aren’t trying hard enough. Go to someone who will listen.


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