Diagnosis of Lipedema with secondary Lymphodema

[crouton]

I thought about bumping up the thread from a year or so ago where the a**hat mentioned my "tree trunk" legs and said I would be in a hove-around if I didn't lose weight. But I thought better of bumping up that thread and decided to start a new one.

Once I got a job with insurance coverage I went to an endocrinologist. I've been working out / dieting now for three years and I've barely lost 30 pounds. When people looked at me, they most likely had the same thoughts as the guy that posted about my pictures - you're just fat. You need to work harder. You're not sticking to your calories. But I KNEW I was - and am - doing everything I can. Like I said in that thread, I'm in the spin classes, I'm in Bodypump, I'm in the gym on the squat rack. Since then, I've started eating whole grains (but limited bread, more oatmeal), cut out sugar, diet soda, and still working on drinking a gallon of water. I may never get that goal reached

So I went to an endocrinologist, because I KNEW something else was going on.

It's been a year since my first visit. He found issues with my testosterone levels, which explains some of the hormonal issues I have each month. He's put me on various medications but when I still didn't lose a lot of weight he realized there was something more than weight loss.

He was the FIRST doctor, EVER, to tell me my legs are SWOLLEN. Not just fat, although there is fat there. They are SWOLLEN. And yesterday I got my diagnosis - Lipedema with secondary lymphodema.

Lipedema is a fat disorder, primarily in women, where adipose settles into the tissues, usually the legs, and stays there. It can start in adolescence, during childbearing years or at menopause. This is genetic, and causes disproportionate upper / lower body. This hit me when I was 16-17 years old. I've been living with these legs for over 20 years, hating them, hating me, thinking it was all fat, when it was a genetic disorder I had no control over. This type of fat CANNOT be dieted away or exercised away.

On top of this and because I am overweight (I'm not saying I don't have more work to do, I'm saying it's just harder for me) I have secondary lymphodema, which means I'm retaining lymphatic fluid. There are therapies to assist with fluid drainage, but no medication, no cure.

I spent yesterday after work, crying with my husband, knowing that I most likely will NEVER have the legs that I want. Nothing short of therapies / surgery can correct this, and surgery carries its own risks to the damaged tissues and already stressed lymphatic system.

I know many women here ask about their hips, butt, thighs. Some of you may need to pay more attention to diet / exercise. Yes, legs will take time if you carry most of your weight on your lower body. But if you KNOW you've been working hard, you've been eating right, if you're losing in your upper body but not the lower body, if you google Lipedema for pictures and say "Those are my legs!" then go see an endocrinologist and see what else may be going on.

Six million women have this. Many doctors do not know about it. Many say "You just need to lose weight." No one believes we are working out, we are eating right, we are exercising. And it's discouraging to come into an exercise forum and have an a**hat tell you, out loud, everything that you already hate about your legs.

Do not give up.